This page contains the chronological blog.
Whether it comes on slowly or faster than a speeding mullet, dementia is not for the faint of heart or the inflexible of personality. When it reaches out and touches someone in your family hold on, hold tight, keep your chin up, laugh when you can, cry when you need to, and vent. Vent a lot. That’s probably the biggie. Do not suffer in silence. Coping with dementia is a group effort. And, preferably done over a glass of wine. Or four.
UPSIDE OF DEMENTIA, I: NEW RELATIONSHIPS
“You mean there is an upside to dementia?” Oh, yeah. Everything and everyone is new. Relationships and all the baggage associated with them are wiped clean. Ever wanted to start all over? Here’s your chance.
Small pleasures become great.
There is a popular joke in retirement communities. There are many ways to set it up, but here’s a basic one:
“What’s so great about growing old?”
“I don’t know.”
“You can hide your own Easter eggs!”
Yuk yuk. But seriously now . . .
Dementia resets family relationships.
If you’ve had a less than satisfactory relationship (read “constantly frustrating”) with your loved one, here’s your chance. Relationships that have been set for decades are now totally negotiable.
Dear old Dad always thought everything you ever said or did was simply adorable? Well, don’t be surprised if he suddenly starts admonishing you for mildly snarky comments that he used to totally understand and agree with. Now’s the time to step up your game and regain your awesomeness. Become more charitable, or at least bite your tongue.
And, what if Mom, who never liked you very much, is now strangely delighted to see you? It’s not a setup for yet another time when she hurts your feelings. Run with it! You’ve reached the unreachable with absolutely no effort on your part whatsoever. You’ve hit the jackpot and maybe a place back in her will. It’s a clean slate. Make the best of it! It’s a new world.
Secrets are forgotten.
You don’t have to be embarrassed anymore. Mom now can’t remember that horrible indiscretion during your junior year in high school and will finally quit bringing it up. Thank you, dementia.
Conversely, she doesn’t remember what you know about her, so you no longer have to work so hard to avoid certain subjects. What a very freeing effect on your conversations!
You become beautiful.
Remember how Mom used to make hurtful negative comments about your (hair, body, clothes) every single time there was a family get-together?
Well, somehow magically, things have changed. She now keeps telling you and everyone around how great your (Insert one of the above.) look/s. Proving yet again that beauty is in the eye of the beholder.
We will keep adding to this list. You’ll be surprised. Dementia is not all doom and gloom.
Are you a stickler for facts? Oh, dear. You are not going to have a good time. This is the time for flexible reality and for creative conversations.
Your mother thinks every time you take her out that she is in some other town? And, it’s always the same town? And you have told her a dozen times, “No we’re still in (her hometown)”? Give it up. Instead, try thinking, “Isn’t that great. She loves that town and I just saved a lot of time and gas getting her there.” Ask her why she likes it so much. If you ever went there with her, reminisce. Bring up other places you have visited together or apart. You might find out some very interesting stories about places that are in her long-term memory.
Your father insists that an empty lot in town or the lawn outside the restaurant is where the car races are held? Wonderful! It doesn’t matter that no car race has been held in town ever. For some reason he thinks they have been. Who are we to set him straight? Express interest. Ask what kind of cars. Transition to stories about cars and car trips in your family.
Your sister says that she doesn’t have a place to sleep, and she tries out the various empty beds in her assisted living facility. She tells you that each one has a different view. Don’t bother pointing out that she has her own apartment there and always sleeps in the same bed. Appreciate the variety and the adventures that the facility “offers.” How nice. Which bed does she like? How are the neighbors?
Your friend asks you the same question five times in a fourteen minute conversation. Don’t get distressed or annoyed. Figure out how to answer it differently each time. It’s an interesting challenge. I always think, “What if she realizes if I answer the same way that she already asked and forgot?” I don’t want to embarrass or distress her. Improvise, elaborate, give a completely different answer. You’d be surprised how many ways you can answer the same question.
Think of all conversations as a creative writing assignment or an improv exercise. It’s good for you. Keeps your mind alert. Keeps you young. And it makes for interesting conversations. You never know what you may learn if you let the conversation flow instead of correcting every dubious statement.
Note: For great suggestions regarding communication strategies, including confabulation, see “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW in the Communication Strategies section at verywell.com.
A PRISONER OF DEMENTIA AND SELF-AWARENESS
One of the hardest things to deal with in a loved one with dementia is their own self-awareness of their deterioration. And, Oh, Man! When they cry, that’s the worst. The tears are usually followed by, “I hate it here,” “I’m a prisoner here,” or “What’s the matter with me? I feel so useless.”
Of course, I haven’t experienced the combative stage yet. Some friends tell me it’s sure to come and it is BAD, but my mom isn’t there yet. So, for now, this is the worst for me.
Can you imagine being aware of increasing dementia? You know that your mind is going and that you don’t remember parts of your life any more or even ten minutes ago. You can’t manage your own affairs or even operate a phone. Other people help you dress and accompany you everywhere. You are not allowed out on your own as if you are a prisoner. You think no one loves you because they haven’t visited you “in a long time,” but they tell you it was really just two days ago. You can no longer read a book because you can’t follow the story line. Every time you pick it up, it’s like you are starting from the beginning again. So, what do you do? You just sit in the lobby all day long. It’s a fearsome existence.
There is no point in ignoring the tears. When my mom says she hates it at her assisted living facility, I go with, “I know, Mom. It was so much better when you could live on your own in your own apartment.”
I don’t mention how it was even better than that for the eight years she lived with my awesome generous sister and brother-in-law. She had her own wing in a beautiful home, a fabulous garden with a koi pond by a vineyard to relax in, and neighbors coming and going. However, she chose to move out. If she hadn’t, she never would have suffered the injury that catapulted her into dementia. But, I can’t throw that in her face or even “bring it to her attention.” Besides, she doesn’t even remember those years, so why distress and confuse her? I just say, “I know, Mom. I know it’s hard.”
She’s right. She is a prisoner. But that is because she is a prisoner of her body which keeps falling down and a prisoner of her mind which is also rapidly failing her. She no longer has any independence, and that is a sad thing. But her self-awareness that things are not right, that she can’t remember what you just said to her, that she is losing control–THAT is scary.
So please, keep your core muscles strong. Falling leads to more than broken hips.
Note: For a helpful article, Responding When a Person with Dementia Wants To Go Home by Andrew Rosenzweig,M.D., go to the Communication Strategies tab on the following website: verywell.com
SWISS CHALET, A SWEET DELUSION
If you’re going to have a delusion, make it a sweet one.
My mom told my sister recently that she bought a chalet and that when she got fed up with being in her assisted living facility, she now had a place she could go to escape for a while. I can imagine my sister’s dismay, intellectual curiosity, and restrained amusement at this new delusion of my mother’s. Mom went on to say that she bought a second chalet, as well, so that when we all came to visit, we would have a place to stay.
That is so sweet of her!
This is so bizarre, though. I mean why would Mom buy a chalet? A nice English cottage I could understand, but a chalet? It makes no sense at all.
Okay. Maybe you think I should be more concerned that Mom is buying imaginary properties with imaginary money, but that’s really not the perplexing part of the delusion for me.
You know how you have dreams at night that make absolutely no sense at all? You wonder where on earth they came from? And then other dreams actually do seem connected to your day, something you’ve been worried about, or something you saw on tv or read about?
Well, another delusion of Mom’s is that she consistently thinks we are in Vallejo, California when we are not. That delusion makes sense to me. She liked visiting General Vallejo’s house. But a chalet? Where did that come from? It’s not like Mom’s very poor London family sent her off to a posh Swiss finishing school in the middle of World War II. And I don’t see many chalets around California where she lives now. So where did it come from?
The brain is a mystery whether it is crazy dreams, illusive memories, odd thoughts, false perceptions, or the hidden corridors of dementia. I don’t know why, but somehow there is a Swiss chalet in my mother’s brain.
For a related post, click here to read “Upside of Dementia, I: New Relationships.”
GUILT IN CAREGIVERS
There are many caregivers in our world, more than at any time before. Caring for a loved one who is ill places very difficult demands on family members. However, it is not just in the act of caregiving that we face challenges, but in the feelings that go along with it. One of the strongest feelings is the caregiver’s guilt.
No matter what you do, you believe in your heart that it is not nearly enough. You have a job, a family, a health issue of your own, a home far away—the everyday obligations and obstacles. In your rational self, you know you are doing what you can, but your heart is stronger. It nags at you during the day and keeps you awake at night.
Add in dementia.
You keep visualizing your loved one sitting all day long in a lobby except for the three trips to the dining room and any trips to the bathroom. She doesn’t read or watch tv. In spite of your efforts to encourage her, she is not interested in any of the offered daily activities. She doesn’t remember any recent visits, so she is feeling lonely, neglected, forgotten. You know it. How soon can you get there, and how many days can you stay? And once you leave, for how long will she remember you were there?
The answer is to be there every hour of every day, but you can’t be. So it’s guilt—ongoing tear-at-your-gut guilt. It is demoralizing, agonizing, and unrelenting.
And wanting it to end? Worse guilt. And when it does finally end? Probably the worst guilt yet for feeling relieved that she’s not living that way any more and for feeling relieved that you no longer have to feel guilty for not being there.
So there’s really no good ending to this story for any of us.
Notice the caregivers in your world. Really see all your coworkers and friends who are bearing this burden on top of doing their jobs, raising their families, trying to take care of their own health issues, and travelling miles or even across country to do “the right thing.” Their stress is enormous. Maybe mention caregiver’s guilt and ask them how they are holding up. Maybe they’re not.
For another post dealing with preparations for death, click here to read “Happy Birthday to You: Birth and Death.”
IMMIGRATIONS AND DEMENTIA
This is a long one because it is just that crazy. Please hang in there because it’s totally worth it to discover how Immigrations views dementia and the hoops you have to go through to stay in this country.
In early January, my brother and I took Mom to a medical appointment. While I was waiting in line to check her in, I idly viewed her Residency Card and realized that it expired in April, three months later. Mom is not a citizen and has to renew her card every ten years.
And so began the odyssey that continues as of the date of this post, nine months later.
I spoke with the Immigrations people and started Mom’s application. Due to her “disability” (dementia and a fall risk), they said they would send someone out to her assisted living facility to take her fingerprints, do her biometric interview, and go over her application so that she would not have to go to San Francisco. (That should be interesting. “What’s your name?” Mom is fairly good at knowing her first name, but that’s about as far as it goes.) Once they received and processed her application, they would call for an appointment.
My sister took the application in for Mom’s signature. My sister watered the plants, picked up laundry, and did the regular Easter egg hunt for Mom’s keys and wallet. Mom apparently just shuffled the papers around, but did not sign the form. That was before we realized she didn’t know how any more. My sister got home and realized the signature line was blank. She returned for another try, and the application eventually went off for processing.
In March, a form showed up in Mom’s mailbox. It probably sat in there for a while because Mom finally hid her keys in a place my sister could not discover. As a result, my sister was unable to pick up Mom’s mail. (To read Hide and Seek, The Dementia Game, click here.)
The letter accompanying the form notified us that Mom had an appointment in San Francisco with Immigrations for the following week. The letter required a response prior to the appointment. Immigrations required that the letter be returned with a box checked either ‘reschedule’ or ‘unable to appear’ if the appointment time and date did not work. Additionally,the letter informed us that our request for an in-home appointment must be made in writing with some supporting medical documentation.
There was no way we could get all this done in less than a week! My sister worried because the form warned that if Mom did not show up, Immigrations would consider the application abandoned. “Will they deport her?”
I called Immigrations. I was told we needed to submit a doctor’s verification of dementia and ambulatory issues. However, they assured me that as long as the letter and form were sent in, even if it was after the fact, her application would still be good. I was so irritated. When I first started this process her case worker made this sound like it would be so easy.
I’m not certain which is more annoying—Immigrations or Kaiser. You can never make a direct call with Kaiser. They take a message, and by the time it gets to your doctor’s office, it has gone through so many people and permutations, that it is like playing the game “Telephone.” You would not believe how it ends up.
I called Mom’s doctor to ask her to email a statement regarding Mom’s limitations so that Immigrations would send someone to do her biometric interview at her residence. There were three falls the previous December that prompted a visit to her doctor, so that requirement didn’t seem too hard to substantiate.
I received a call from someone at the doctor’s office asking what biometric equipment Mom needed. Uhh. Trying not to scream, again I explained. “We need a letter from her doctor explaining why Mom cannot travel to San Francisco. Then they will send someone to Mom to conduct her biometric interview. This is for Immigrations. We really don’t want her to be deported.” (Do you understand the words that are coming out of my mouth?)
That person took my phone number and set up a call for me with the doctor the next day. I waited around the following day while the poor doctor spent almost half an hour trying to call my sister who was at work before calling me. (Don’t ask.) After I explained exactly what we needed the doctor to say, the doctor said, “Oh, I thought she needed some biometric equipment.” (Of course you did. Your staff sucks! Silent screaming again.)
The doctor wrote and faxed a letter to my sister because my sister has power of attorney. Later that day, my sister emailed me, “It’s a miracle. I actually have it in hand!” I told her she must be hallucinating.
All that went off to Immigrations.
Four months later, in July, I sent the following email to my siblings: “Just in case any of you wondered whatever happened with our efforts to renew Mom’s ten-year permission to reside in the country legally, I have the following update:
I truly figured that they had forgotten all about her, but I got a call from Immigrations today asking if Mom still wanted her green card. Instead of telling them to stuff it, I summarized where we had left off, which was that they were to send someone to her for her interview. They gave me a number to call to check on the status of the application.
And now We Veer Off into the Truly Disturbing Part.
I also fended off their efforts to get Mom to become a citizen. (This happens at every single call.) I explained that Mom has dementia and is not able to study or pass any kind of test. They informed me that she could get a medical excuse. (?) The person I spoke to then tried to wow me with the awesome benefits of Mom being a citizen. Was I aware there was a presidential election this year? (Oh, gee, no, Mister. I’ve been living in a cave on an island in the Pacific with no contact with the outside world, which is why I am talking to you people on a phone!)
Well, anyway. Get this. Mom would able to vote in the current presidential election (!!) and would further benefit by reduced fees for her next renewal (in ten years. Mom is now going on 92.) I found this somewhat disturbing as I already explained to them that Mom has dementia to the point that she cannot understand or complete citizenship, so the encouragement to vote seemed rather alarming. Maybe they figure most American citizens are cognitively challenged so no big deal. And we do have a stunner of a candidate this year, so I can’t really argue with that view. Still, I found it difficult not to yell, “WHAT THE HELL ARE YOU THINKING?!)
Emphasizing that she did not have the mental capacity to vote and that I didn’t expect her to live another ten years to take advantage of the fabulous reduced rate (buy now, get one free) finally made the guy give up.”
Dispair and Alarm
My siblings were naturally appalled at the idea of Mom voting and who she would vote for. My brother opined, “She would actually be an enlightened voter comparatively speaking.”
I promised to keep my siblings updated as Homeland Security considered how much of a threat my 91-year-old mother was. I also advised my uncle in England not to worry. We would give him ample warning if the U.S. decided to deport her.
So, the “status” I obtained through a recording was that on June 29th a letter had been sent to Mom requesting additional evidence. Big effing help. Getting annoyed with them (yet again), I stayed on the line to talk to a human, gave him all history to date, and expressed concern that we were just going in circles.
This man had no access to specifics and could only advise me to wait for the letter to show up, but assured me that our response would keep her application open. We were now three months past the expiration of her card.
Reality check: This is all for a 91-year-old English war bride. Can you imagine what it’s like for people today???!! I find myself tempted to say many things here that could get me in trouble and probably get me deported. Use your imaginations.
The letter arrived. They now wanted within 87 calendar days from the date of the letter:
- “2 passport style color photos formatted as indicated in attached photographic guidelines.” (Nothing was attached. Why are we not surprised?)
- A medical doctor’s certification on letterhead. (I am not certain if they found what was previously submitted on the form they sent for the same purpose to be insufficient or if they just want all evidence together at one time.)
- (The kicker) Local police clearance letters from every place lived in during the past 10 years. (What the heck is this?? This is totally ridiculous. My sister responded, “She could be a felon you know. She has been known to steal napkins off the dining room table. I am sure she is using them to plot out some terrorist attack. I am thinking of writing Obama; perhaps the Queen. Maybe we could have a new ‘Yalta Conference.’ I think this is all because she is not showing up in person, albeit I don’t understand why a police check is now required. If she was in front of them would they know she had just bombed another country?? Crazy!!”)
Once Again Into the Breach!
I called Immigrations AGAIN!! because we are best buds to ask about the photo requirements and complain/ask about the police clearance letters. Mom never had to do that before. Why now? I imagined it was just a letter from them saying she had no arrest record. However, it seemed so unnecessary. Do they mean to tell us they do not have access to FBI and police data? Thank goodness Mom lived in the same town for ten years. I also asked why they provided a form that the doctor filled out months ago, but now wanted letterhead.
I was given a website address to get the photo guidelines that they did not provide. They told me that even though the doctor sent her info before, they were requiring the same info on letterhead. (Arbitrary duplication. Plus, they have no idea that dealing with Kaiser makes you want to stab yourself repeatedly in your right eye.) And, I was told that yes, we do have to get a letter of clearance from the police.
The police station in her town confirmed that this is a normal requirement now and not just because Mom wasn’t coming to them. We had to pick up a form in their lobby to fill out and have Mom sign. Once they had it, they could provide the letter in a week. Oh, and by the way, there is a 71.00 charge. What a racket! Good thing Mom only lived in Livermore in the past ten years or we would have multiple charges in multiple cities. We already paid 170.00 to start the application, plus another 450.00 when we sent the application in. Now this.
Regret, Regret, and Self-Loathing
Oh, how I wished I had never noticed her card. Why am I so stupid? Why do I read things? Damn it! What would they have done? Come looking for her three years later? Or never?
I was fantasizing about letting her application lapse, but didn’t know what would happen now that I had started the process.
Our uncle in England emailed, “I have alerted the British Gov’t that we may be swamped by GI brides deported from the USA. They have doubled the size of our Royal Navy so we now have two ships instead of one. Thanks for keeping me in touch.”
I let him know that we were praying that none of Mom’s criminal activity (stealing looks, robbing Peter to pay Paul, and stabbing lettuce) has ever attracted the attention of the police. I signed off, “Every new requirement buys the Royal Navy a little more time should we fail in our mission. Intrepid is counting on us all.” (Sometime read the book, A Man Called Intrepid.)
Still In Limbo
At the end of August, I flew up to visit Mom and my sister and brother-in-law. Three trips to the police station got the request for the clearance letter rolling. Mom had to sign it. I had to tell her how to spell her name letter by letter, so great signature. You should see it. My sister got the doctor’s letter. I will crop the photos which I took at Mom’s residence. Next week when the clearance letter is ready we can send all this to Immigrations and wait for the next set of hoops to jump through.
We have been at this for nine months. We could have had a baby by now!!!
PLEASE REMEMBER TO VOTE! (Wisely, if you can manage it.)
HIDE AND SEEK, THE DEMENTIA GAME
Hide and Seek was a fun and exciting game when we were kids, but now not so much. Our current version goes like this—Mom hides objects (usually her wallet or her apartment key), and my sister who lives closest to Mom searches high and low for them. The rest of us receive emails like this:
“She has turned into the Easter Bunny who loves to hide her precious eggs—her wallet, jewelry box, money, keys.”
Another time—“So, this weekend I searched for keys, glasses, and wallet. Found all three, and $20 stuffed at back of her undie drawer. Got to laugh.”
After a while though, it became less amusing.
My sister soon caught on to Mom’s favorite hiding places just like when you were a kid, you knew that your younger sibling tended to always hide in the closet or behind the drapes in the living room. At various times, my sister found Mom’s wallet hidden under clothes in the dresser, shoved in the bookcase, or under her pillow. One day, she looked in all the usual places to no avail. Getting irritated and frustrated, she then branched out, searching all over Mom’s apartment, including in her walker and even in the refrigerator. Still no luck.
Frustrated and out of time, my sister got our mother up out of her armchair to head down to the dining room. Just to be thorough, she lifted the chair cushion. Yep. There it was. My mom had been sitting on it all along.
I think my sister was internally blowing her top. She confiscated the wallet and took it home with her. “I now have her wallet as she is getting better at hiding with each visit. So, if she says she is missing her ‘purse’ or says that someone took something, you will know it is her own doing or that I have it and you can reassure her.” I applauded my sister’s self-defense measures. Problem solved.
The keys presented a different problem. Mom had an apartment key and a mailbox key. My sister confiscated the mail key early on, but Mom had to maintain possession of her apartment key. Frequently Mom thought she’d lost the keys, but had merely shoved the plastic bracelet they were on so far up her sleeve that she couldn’t find it. It wasn’t unusual to experience what my second sister did during a visit. “When I got her for lunch, she said she couldn’t find her keys and was looking all around for them. They were on her wrist!” (For an example of how Mom losing her mail box key complicated life, click here to read “Immigrations and Dementia.”)
If the keys weren’t actually on Mom, there were some other obvious possibilities. Sometimes, in taking off her shirt the night before, the keys came off with it. A quick search in the hamper or amongst the clothes by her bedside usually turned up the missing key. And sometimes not. Then it was check the walker, check her dresser, check her bedside table, check her armchair. The key generally turned up. “She lost her key again this week. I found it in a drawer.”
However, as with her wallet, Mom seemed to get better at hiding the key. Over a year ago, we started receiving emails from her assisted living facility. “Your mother has lost her key. We searched her apartment on Monday to no avail and as of yesterday they are still missing. Please contact us regarding a new set.”
My sister dutifully went in and hoped to find them. Most of the time she did, but sometimes they were not to be found. “After 45 minutes searching today, I gave up.” My sister let us know that she could order a new set at a cost of $25.00 from the facility, “but given how frequently she loses them, I’d like to wait a week or two to see if it surfaces. I have ordered four sets so far. I’m thinking an implant might be a good idea. If she can just scan her forehead to open the door, then I think we are good!”
This went on and on, with all of us frustrated with the situation and the unnecessary mounting cost. And then the day came when Mom got to the point where she needed help with all her transfers due to her fall risk. The responsibility of the key fell to her aides. It’s an ill wind that blows no good. Another problem solved.
The Tissue Issue
So, with no wallet or keys to hide, Mom moved on to hiding tissue boxes. I know. Huh? You have to understand that tissue is very important to Mom as her nose is running daily even though she is not. My sister once found four boxes hidden under her armchair as if they were golden tickets to Willy Wonka’s chocolate factory. My sister sent out another venting email. We joked about gluing boxes to the walls of her apartment.
My brother put the problem in perspective, “I don’t see losing Kleenex as an issue since she usually has half a box stuffed up her sleeves.”
Good point, but Mom worries about her lost treasures.
Hide and Seek, Solitaire Version
As annoying and time consuming as Hide and Seek is, it is occasional and nothing compared to Mom’s internal version of the game. Instead of objects, she loses and hunts for her memories. Playing Hide and Seek with your memories is absolutely no fun at all, and increasingly she is unable to find them.
IRRATIONAL DESIRES AND HOSPITAL NIGHTMARES
After a night in the hospital not sleeping due to Mom’s delusions, hallucinations, and attempts to get out of bed, I am trying to adjust my expectations of life.
It interesting the things that we decide we want out of our lives when we are children or in early adulthood. During that time in my own life, I decided I wanted one of my parents to die a natural death. My father hadn’t, so that left my mom.
Although dementia is a natural disease, the way my mother got it was not via the usual normal slow progression. Instead, it was the result of an event—an accident, which was not my mother’s fault. However, it constituted a medical event that catapulted her into dementia. One week she was bright, witty, and articulate except for the occasional search for a word (the same way I struggle at 27 years younger than she). The next week, she was in the hospital after almost dying and not herself any more. Her accident caused an acute stage of rhabdomyolysis (muscle breakdown). Her creatine kinase levels were 4,000 times what is normal. Mom was therefore in a cardiac ward.
Hallucinations, Delusions, and Confusion
When I stayed overnight with her in the hospital, she was hallucinating that there were cats playing by the foot of her bed. She also had delusions. One was that the tv was a window through which people watched her. Another was that the hospital hallway was a place she regularly walked down to listen to people singing in a choir.
Mom was confused and didn’t know me. She thought I was a stranger, her mother, my sister. Mom asked if I had children, how the weather was where I came from. She was very polite as she clearly attempted to make conversation with a new acquaintance who just happened to be her daughter. Then she started calling me “Mom.”
A Sliver of Logic
Mom asked if her kidneys were okay. She remembered that her doctor had had her go to a class related to kidney problems. Mom was worried, and I thought somewhat logical in suspecting that was why she was in the hospital. She wanted to know truthfully, did she have what her mother had — cancer of the kidneys.
Mom was paranoid. The staff got her out of her bed and into a chair for dinner while they remade her bed. Mom thought that the chair would tilt and drop her down a chute to the basement where people would murder her. She clung to me and begged me not to leave her there.
Loss of Basic Skills
Mom couldn’t feed herself, so I tried to feed her something. She had been days without food or liquids. She kept doing weird things with the food and the utensils. Even eating with her fingers didn’t work. Mom just didn’t understand what she was doing, and her hand-eye coordination didn’t work at all.
The night was an eternity. Mom had been through a horrible ordeal and was up until about 3:00 a.m. the night before after the EMTs brought her to the hospital. I thought that surely Mom would sleep fairly well. At 8:00 she did fall asleep, and I darted downstairs to get something to eat for dinner. I hadn’t eaten since breakfast. The cafeteria was closed. I got something out of a vending machine. I can’t remember what. I was back up at 8:10 to find Mom with her legs dangling over the side of the bed, her gown around her waist. “Help me. Help me,” she whimpered. She had tried to get up. She simply could not remember that she could not stand.
From then on, we were caught in a cycle.
Mom frequently wanted to go to the bathroom. It was difficult even with help from staff to get her up and to the commode. She couldn’t stand on her own. Mom clutched me, whispering desperately, “Don’t leave me with these people.”
The staff was bitchy and annoyed with her for thinking she needed to go to the bathroom so often. They made comments to each other as if she wasn’t there, as if her feelings didn’t matter. “Oh, she just thinks she has to go.” They were not happy when we finally got her onto the commode only to find she really didn’t need to go.
Their faces revealed their annoyance, as well. I wanted to slap them. After over two days of being on the floor, lying in her own urine and feces, it didn’t seem odd to me that Mom wanted so much to get to a toilet of any kind. I wanted to yell at them to have some compassion or to at least consider that this was part of their job.
The next step in the cycle was Mom eventually falling asleep again. But never for long.
Then, five or ten minutes later, I could see her legs start to kick the blanket off, and Mom would try to get out of bed. I had to watch her continually so as to stop her.
Then Mom would ask to go to the bathroom again. Back to Step One.
Finally around 10:00 pm, I begged the hospital staff to watch her so that I could at least go to the bathroom. (Wanting to pee is a family trait, I guess.)
This cycle went on and on. In spite of her ordeal, Mom never slept for more than five or ten minutes at a time that night. There was no sleep for me. Around 5:00 a.m. she actually slept for 45 minutes straight, but I couldn’t relax enough to do the same. Of course, I kept waiting to see her legs start to kick the blanket off again. I was in the same clothes for 34 hours before I could finally shower and change that evening. I’m too old for an all-nighter, especially one so stressful.
It was a nightmare, but a nightmare for both of us. I cannot convey how distressing it was. As I said, Mom had no cognitive concerns pre-injury, and now she was completely . . . out of her mind?
So, what I’m getting to is this: My mother was robbed. There was a mugging, and Mom was robbed of herself. I feel robbed. I just didn’t think it was too much to ask that one of my parents die a natural death. But I guess it was. I can’t believe how disappointed I am. It’s as if I somehow expected the wish I made over 40 years ago would just have to come true. I’m trying to get over this feeling of self-pity and betrayal.
I had no right to expect I’d get what I wanted. Living in America, I am privileged. My country is not ravaged by civil war or by out-of-control disease and poverty. If I stay out of a gang, take certain precautions about where and when I’m out and about, don’t drive under the influence, drive defensively, and don’t carry toy pistols in my pocket, I have a degree of expectation that I will be safe. How did this happen?
It was an accident, and accidents happen. I know this, and yet I’m feeling so sad and betrayed. I think I was stupidly naive to want what I wanted.
For just a few of related posts from this blog, click here for “Dealing with Delusions and Memory Loss,” click here for “Inconsistent Memory vs Nightly Rituals,” and click here for “Meeting Financial Challenges, especially the section entitled “The Trip.”
UPSIDE OF DEMENTIA, II: CONVERSATION
I told you there would be more. Here is the second part to what will be a recurring post about the unexpected benefits of dementia as long as I can find any. Even with dementia, there is still much to enjoy during conversation. (To read “Upside of Dementia, I: New Relationships,” click here. To read “Upside of Dementia, III: Preserving Family History,” click here.)
A Successful Topic of Conversation
Conversing with a loved one with dementia can be a frustrating experience. They don’t remember anything for very long, so frequently the conversation is a series of the same questions and comments over and over again. Sometimes, too, you just weary of having to repeat and explain every comment you make because it’s never understood the first time. Conversation just becomes too arduous, and the silences become more frequent.
If you could only steer it to a subject that could last for more than two exchanges, you would be thrilled.
Well, the long term memory is strongest and sticks around the longest. That means that your loved one’s most secure ground is their childhood. This is a wide open territory to mine when conversation lags or becomes frustratingly repetitious.
Start with What You Know
There is much I know about my mother’s life before she met and married my American father during World War II. She reminisced about her childhood over the years—sleepwalking, having scarlet fever, her mother’s strange behavior, rats in the coal cellar. We heard she was sent to a convalescent home at age nine to help cure her of stammering and her nervous disposition. Until very recently, she still managed phone conversations and spoke frequently with her last remaining sibling in England. She and my uncle frequently triggered each other’s memories of their childhood, so there were fresh influxes of information from time to time. Mom also at one time wrote a 60-page autobiography, copies of which she distributed to us four children.
All of this gives me the foundation to gather additional details that I am interested to know. More importantly, it gives my mother the opportunity to be the expert and bring richness to a conversation that adds not only to family history but also a fuller understanding of her.
Then Ask for More Details
For example, I knew that my mother and her siblings were evacuated out of London during the war. All parents were exhorted to allow their children to leave the city that was expected to be the main target of bombings. Children went off with their gas masks, some clothes, and a day’s supply of food. But they didn’t go as family, they went with their school class and their class teachers to be distributed to villages in the country. Therefore, none of my mother’s siblings saw each other or their parents very much for years. It always seemed horrible to me that these children were not only away from their parents, but did not even have the comfort of being with a brother or sister at a time their country was at war.
So during one of my most recent visits, I asked Mom how old her younger brothers were when they were evacuated and whether they were scared. She surprised me by saying that the boys thought it was all a great lark and loved the families they were placed with. We figured out that they were eleven and nine years old at the time, given that she would have been fourteen. Her older sister was old enough at sixteen or seventeen to be allowed to stay in London. We talked about how hard it must have been for parents to send their children away for years in order to keep them safe. As I already knew, their home was bombed out. This day, though, Mom told me that their home went with the very first bombing of London.
Conversation Rating: A+
Altogether, our conversation was much more valuable than talking about the garden or how my husband and I are keeping busy in our recent retirement. More importantly, it is a topic in which my mother is the authority, not the confused ‘patient.’
CONFABULATION CAN BE WONDERFUL
There is nothing like a little confabulation to add joy to your life. Confabulation is when people make up stories to explain things. People with dementia are not lying. They believe what they are saying is true.
Living a Fairy Tale
About five years ago, I gave my mom a pair of Keds I bought and then decided were slightly too small for me. She loved them because they zipped up. Once she was living in the assisted care facility, I noticed that they were pretty much the only shoes I ever saw her in. So I decided it would be nice for her to have some variety.
I ordered her a similar pair in pink because my mother favors the purple-pink colors for her wardrobe. When I flew up to visit her for a few days in September, I brought them along and anticipated a welcomed reception on her part.
Not to be. She didn’t like the color. It was too “orangey” a pink. I hid my disappointment and told her I’d return them for the pale blue option. I reported my failure to my sister when I returned to her house at the end of the day.
My sister, God bless her, told me, “Oh, I wouldn’t take what Mom says too seriously. She changes from day to day. Why don’t you just leave them in her closet? At some point when her aides are dressing her, they will pick them out. She probably won’t even notice.”
The next day, after our outing and a long talk in the lobby afterwards, I walked Mom to her usual table in the dining room. Then I made several trips ferrying supplies, laundry, and miscellaneous facility mailings from my car up to her apartment. I also brought up the shoes and placed them in her closet.
And They Lived Happily Ever After (The Confabulation)
About three weeks later, I received an email from my sister telling me that she noticed Mom was wearing the pink shoes when she visited her over the weekend. My sister thought I would get a chuckle out of their conversation.
My sister told Mom, “Your shoes are so pretty. I love the color.”
Mom replied, “I think so, too, and I got them for free!”
My sister expected Mom to say that one of her aides had given her the shoes as a gift, but Mom had a much more elaborate story. It went like this: “There was this man walking around here. He asked if I wanted a pair of shoes. I asked if he was selling shoes. He said he had a pair of shoes that someone had bought but had left, so he was looking for someone who they might fit and asked if I would like to try them on. They fit, so he said I could keep them.”
I thought this was adorable. Mom is Cinderella, and the shoe fit!
Note: For a great article about confabulation, click here to read “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW.
For another post from this blog about confabulation, click here to read “Creative Conversations.”
HAPPY BIRTHDAY TO YOU: BRITH AND DEATH
Birth and Death
Soon my husband and I will be making the 7-hour drive upstate to visit my mom, sisters, and brother-in-law. This visit is timed to celebrate Mom’s birthday. She will be 92 years old.
I am leery of this event because people tend to die after birthdays as well as after the very important winter holidays. That being said, I’m not sure that my mom is even aware that her birthday is coming up or that it would mean much to her even if she were. I started mentioning it to her last month, and I know my siblings have been doing the same as we make plans for the family get-together and celebration. However, Mom forgets. I’ve never had her ask me what month it is, just what day of the week, and since she can’t even remember her last name, I don’t know if she knows the month of her birthday any more. We can take less and less for granted as time goes by.
Unfortunately, there is another reason I am feeling superstitious. A few years back one of my sisters asked me how long I thought Mom would live. I don’t know why, but I responded, “92?” Ever since, I have geared myself up for this coming year to be the one in which she dies. It’s magical thinking with no basis in rational thought, but there it is looming in my brain. So it shouldn’t be surprising that I have spent more time than usual lately thinking about her death and what we will do.
Planning for Death and Grief
Mom belongs to the Neptune Society, so there is no wondering about burial versus cremation, but what about the rest? Will we have a memorial service? Who would come? Who is left? Would we speak? I have nothing to say. (Don’t be snarky! I mean at a service. Obviously I have a lot to say or I wouldn’t be writing here on this blog where I seem to be more open and honest than anywhere else. But I digress—)
There is no church any more, so no minister to call on. Will we simply gather as a family? Have our own private wake? Stare at each other in exhaustion and dismay that here we are at another weird parental death? Drink with dedicated determination until we are either completely anesthetized or finally completely emotional and vulnerable? God, I hate that—being emotional and vulnerable. I like to hold myself tightly together and not break down in front of anyone. Maybe I don’t have to worry. At this point, my bitterness would probably block any access to grief.
But we all know that doesn’t work in the long run. The grief, like truth, is going to find its way out even if it’s only in bits and drabs over the course of years. Much healthier to use the rituals that accompany death to express feeling. That’s what they are for. But I’m not a healthy griever. Too much anger. Too much bitterness.
So I’m thinking that I need to have some discussion with my siblings while we are there as to what we plan to do when Mom does die.
A Birthday Present from Immigrations
On a lighter note (Whiplash warning! Probably should have worked up some kind of transition here.) Mom has received an early gift. Or, rather we did on her behalf. Immigrations sent her renewed registration card! ( Click here to see the Immigrations and Dementia post.)
There was no in-home interview after the herculean effort we went through to obtain one. The card just unexpectedly showed up in the mail. I’m not complaining, mind you. It’s just that I was certain that all the additional documents I uploaded in September would not be the end of it. I fully anticipated that Immigrations would either reject the photo I took of Mom, fail to open the password-protected letter from her doctor even though I sent the password to them, or demand some entirely new set of requirements. Then, we still had the interview to schedule and get through.
I don’t know what happened. Maybe they just gave up or took one look at her photo and realized they were beating a dead horse. Pffft. Doubt it. They probably just moved on to other prospects to torment. Whatever the reason, we were stunned and relieved to be done with the whole ridiculous process.
So, yippie! A little bit of sunshine in my thundercloud of a post.
For a related post regarding thoughts about impending death, click here to read “Guilt in Caregivers.”
EXERCISE IN FRUSTRATION: MEETING INCREASING NEEDS
The dementia decline is not a smooth one. Your loved one goes along for a while at a certain level. Then there is suddenly a big dip. Sometimes there is a little bounce back. Sometimes, it remains another permanent loss, and that means meeting increasing needs.
This has been a stressful week. We celebrated Mom’s birthday last week. She enjoyed it, but we noticed she was weaker. Without my husband there, I could not have managed all the many transfers. There were many–from chair to wheelchair to car to wheelchair and then to chair every time we went out. If we moved from her apartment to the downstairs lobby of her assisted living facility or back up again, we at least didn’t have to deal with the car part. I had a hard time changing her into her pajamas that night because she could only stand for a few seconds. This was a definite decline from the month before.
So it was not a huge surprise when my sister emailed me that Mom’s aides reported that she was very weak. However, additionally she reportedly didn’t understand simple instructions and now was starting to pee before even getting on the toilet. The facility recommended we hire a caregiver to help the aide with dressing Mom morning and night. Our other option was to move her to a board and care facility, which would be much smaller and able to provide greater assistance. Either one meant significantly more expense.
Meeting Increasing Needs (or at least trying to)
As a result, I spent a good part of four days researching and talking to caregiver agencies. I also talked to a senior care consultant whose job it is to help us find Mom’s next home. Somehow, when someone calls you back, someone else always calls while you are still on the line. It seems like the phone is always ringing even when you try to sit down to dinner. I also had a difficult time checking back with Mom’s assisted living staff to make certain I was asking for the amount of care that they required in order to keep her until we could move her. The staff I needed to speak to never seemed to be in. It was stressful.
Paying for a caregiver is extremely expensive. Just to have someone come in for two hours a day would double Mom’s monthly cost. That is not sustainable for very long. We still don’t know how much the board and care homes charge, so there is a lot of financial stress that is accompanying the stress of Mom’s deterioration.
Taking care of a loved one long distance is frustrating. I cannot set up appointments and meet with these people myself. I have to set them up for my sister who lives in the same town as my mom. She is working, so consulting with her as I go along is iffy.
And Then the Situation Changes Again
Three days in, the staff person at Mom’s facility finally called me back and told me that they actually wanted a caregiver for my mom 24/7! I was dismayed to say the least. This meant that the caregiving agency needed to be very close by, completely negating the time I had already spent and the appointments I had already set up. So that day I made more calls to secure a local agency that could guarantee having someone available, arranged for the physician’s report to be sent from Mom’s doctor, and prepared for Mom to move asap as we cannot pay an additional 500.00/day (yes, day, not month) paying for a caregiver.
I am waiting to hear whether I can provide some of this care myself until we move her or at the very least when I should fly up to assist with the move, the packing, and getting Mom settled into somewhere new.
When I’m not on the phone or consulting with my sister, I wonder how Mom will respond to the move. She might like the new more homey environment better, but any change is always a risk as to how it affects her. We worry and at the same time know she might not even notice.
It’s been nice to have her in the same place for 2 1/2 years. When this all started three years ago there were a succession of moves—the hospital, skilled nursing, an assisted living facility half an hour north of where she lives, a move within that facility all in the first six months. In addition, we packed up her apartment in which she could no longer live. We felt that we had entered the moving business. Then finally an opening came up in an assisted living facility back in her hometown where she has been ever since. It’s depressing to think of packing everything up yet again. This time, she will likely be moving into a furnished room. So that means disposing of her furniture and most of her clothes. And so we whittle down again.
We are on edge, feeling pressured by her current facility to do something quickly. Yet, we do not have all the information we need. We wonder what is best, what is financially feasible, and of course can in no way predict the future.
I am now on day five of this. Instead of making progress, I am getting nowhere.
For a related post, click here to read “Exercise in Frustration: Meeting Financial Challenges” and click here to read “Choosing a Care Home.” Also see the Resources page, especially the financial aid provided by the Veterans Administration for both veterans AND spouses–click here.
MEETING FINANCIAL CHALLENGES
November was a difficult month for many people. So much to say about that, but I restrict myself to the focus of this blog. At the beginning of this month, Mom’s assisted living facility informed us that it was time for Mom to move to a board and care. Her needs exceeded their services even with the additional aide we paid for. In the interim, they wanted us to provide a caretaker to help the aide with her. Yikes! How were we going to meet the financial challenges?
My siblings agreed with my proposal to move Mom down south near me. It’s far less expensive than where she is. I’m retired and can visit her every day. And, it gives my younger sister a long overdue reprieve from bearing the brunt of caring for Mom. That included eight years of having Mom live with her and my brother-in-law!
However, if you decide to move your loved one to another area, keep in mind that travel is difficult for people with dementia. Air travel is faster, of course, but think about the time it takes to get to the airport, go through security, wait for your flight, and then disembark at your destination, collect your luggage, and then travel from the airport to wherever. That is a lot of changes for someone who is confused. If there are health issues that can be affected by high altitude, that is another consideration. And finally, getting to the bathroom on a plane is not easy even for someone who is ambulatory. How would two people fit in those tiny closet “bathrooms?”
We chose to travel by car, which had its own drawbacks, but at least it didn’t cost us a small fortune. (See the section, “The Trip,” below.
Finding a Caregiver
Surprisingly, it was more difficult finding a caregiver than finding a care home near me. (Click here to read my post “Choosing a Care Home.”) Agencies were either too far away from Mom’s facility or too expensive. Way too expensive. We finally decided to just hire someone ourselves rather than go through the agencies.
I searched online for caregivers, conducted the initial phone interview, and then passed likely candidates on to my sister. She then set up the face-to-face interviews. We found an awesome woman and promised the assisted living that she would start on a certain day. Unfortunately, that fell through when a personal emergency in her family caused her to back out. We moved to the next person on my list.
Pressure to Find a Caregiver FAST
In the meantime, my sister received daily calls from the assisted living facility reporting new problems with Mom. She wasn’t eating. Next, it was that she was spitting up her Ensure. Now, her ankle was swollen and bruised. Worst of all (for them), she wasn’t supporting her weight any more. When was a caregiver starting?!!
My sister assured them we found a place for Mom to move to and were working on the required physician’s report, TB test, etc. to get her moved as soon as possible. That gained us a few days of patience. However, we kept losing caregivers before they could even start. It got to the point where my sister dreaded showing up at the facility as each promised start date passed.
At last, success. At least we thought so, but Mom’s facility nipped it in the bud because we didn’t have workers comp for the caregiver. Who knew? They told us we could hire whoever we wanted, but neglected to mention that detail. We gave up, re-contacted the expensive agency, and hired someone for the duration which was up until Thanksgiving. The cost was astronomical. We told ourselves we would recoup the money over time as the new care home would cost half of what Mom was paying for the assisted living plus the part time aides (before even adding in the caregivers).
Health Scares Jeopardize Our Moving Plan
In the meantime, there were health scares with Mom. As I mentioned above, we were told she was spitting up her Ensure, but the aide neglected to notice there was blood in it. When my sister did Mom’s laundry, she detected the blood on Mom’s sheets. My sister immediately made an appointment with the doctor.
The next thing my sister knew, Kaiser calls her not about the blood, but about Mom’s swollen ankles (plural). It had been ten days since the facility advised my sister about one ankle being swollen and bruised. We speculated at the time that Mom tried to get out of bed on her own and hurt it. The facility never clued us in that it was both ankles, which suggested a much different cause.
We worried that Mom had congestive heart failure or something else. My sister expected to be rushing her to the hospital. We sent alarmed emails back and forth. I wondered if Mom was even going to be well enough to move.
After seeing photos of the ankles, the doctor thought it was not an emergency. She decided at Mom’s subsequent appointment that it was a result of Mom’s age and now being wheelchair bound. She recommended elevation and compression socks. Given that no more blood appeared in the spitting up episodes, that scare was downgraded, as well. Mom seemed to have difficult swallowing, so we did not feel completely relieved. However, we were back on track.
The Veterans Administration Provides Care Benefits for Spouses!
My third project all November was to pursue Veterans benefits for Mom as a spouse of a veteran. Unbeknownst to us, Mom had been eligible for what is called Aid and Attendance benefits to the tune of 1150.00 a month for the past three years. We missed out on all that money! Now that we had been tipped off, I got that process going, as well.
IF YOUR LOVED ONE IS A VETERAN OR A SPOUSE OR WIDOW/ER OF A VETERAN, PLEASE BE SURE TO CHECK OUT THE RESOURCES SECTION. Resources
By the skin of our teeth, we managed to get all the paperwork done in order to move Mom over the Thanksgiving weekend. My brother and his wife drove out from Idaho. Fred and I drove up from Southern California. My other sister popped over from the Bay Area, and we all converged on my younger sister and brother-in-law.
The day before Thanksgiving, my sister and I conducted a secret special op while Mom was safely occupied in the dining room. We hauled bags of her clothes, some photos, a few knickknacks, her walker in case she was ever able to use it again, and her companion chair down the back stairs and stuffed it all in the trunk of my car. Both of us had foot injuries, and it was hot to boot. (LOL–foot/boot. Never mind.)
I told Mom on Thanksgiving that the next day we were going on an outing. We were bringing her down near us so she could visit with us and see our new house. Yeah, yeah. It wasn’t the complete truth, but she wasn’t going to remember what we said anyway. However, she would remember that she was going “out.”
The day after Thanksgiving, Mom, my husband, and I set off on the 7 1/2 hour trip south, leaving everyone else to move her furniture and belongings out of her apartment at the assisted living facility, clean it, and complete the moving out paperwork.
Good-bye to that three-year phase of Mom’s life.
I won’t lie, the trip was not easy. It was an ordeal to deal with the bathroom stops and support Mom’s weight while getting her pants and Depends down and up. Both times she peed on the floor due to the fact that she now starts peeing as soon as she gets within a foot of a toilet. I was in a sweat after each time. The next day, not only were my neck, arm, and back muscles sore, but I also couldn’t bend or turn my wrist for the first couple of hours.
But the real trial was the psychological warfare. Mom kept up a running conversation loud enough for us to hear the sibilance and murmurs, but never loud enough for us to actually understand what she was saying. I wanted to scream at her, especially as we descended the Grapevine on Interstate 5 and entered the L.A. basin with about six freeway changes to accomplish in crazy traffic. (Click here to read the post, “Mom Stopped Peeing on Me. Thanks, Care Home!” It describes an example of what Mom is actually saying. In this case, it’s a bit disturbing, as in “paranoia strikes deep.”)
Somehow we all arrived alive at her care home, although more than an hour later than I expected. The clever staff gave Mom ice cream and introduced her around. This gave us time to unpack enough of the car to make sure she had pajamas and a change of clothes for the next day, to check in her medications, and to let the staff know that she had eaten no breakfast and only half a spoonful of yogurt and a tiny sip of soup for lunch that day. (I don’t want to talk about the restaurant stops.)
By the time we were done, Mom was happily chatting with her new roommate. We let her know we would see her in the morning. There was a moment of panic in her eyes so another explanation of where she was and additional reassurance was in order.
My husband and I left her with fingers crossed that she would sleep well. We were barely speaking to each other due to every last nerve being stretched. We were completely spent and grateful that it was only a four-minute drive to our own home. My husband poured himself a stiff drink while I got out of my sweaty clothes and took a shower. The only thing we unloaded from the car was a care package of leftover Thanksgiving food that my wonderful sister gave us. Without it, it would have been cheese and crackers for dinner because we had no energy to prepare anything.
Three days later,* I am delighted to say that Mom is happy, eating, and sleeping all night. She thinks everyone is “so nice.” Her roommate is thrilled to have her, and Mom isn’t alone at night. I see her every day. I mainly bring her to our house for three or four hours, but one day I just visited her and the other residents for an hour and a half. Every time I take her out, she thanks the staff for their hospitality and says how nice everyone has been as if she is not coming back. It’s pretty funny. It was a herculean task, but the result definitely seems to be a success.
And that is how I spent my Thanksgiving weekend.
I hope you can see from this post that there are many factors involved in meeting financial challenges and that decisions need to be made faster than you are likely to want to make them. So it’s a good idea if you can look ahead and imagine what your plan will be if your loved one needs more care and/or needs to move. Check out the resources available to make sure your plan will work. If possible, explore a Plan B and a Plan C. Consider possible surprises. We did not expect to be asked to provide a caregiver in addition to aides while Mom was in an assisted living facility. We thought she would either be there or move to another facility. That unexpected demand caused us a lot of stress, work, and expense.
* I wrote this two days ago during a four-hour wait at Urgent Care and the Imaging Center because of a swollen and bruised foot. It’s taken me this long to type it up what with all the “To Do’s” associated with the move, spending time with Mom, and reduced energy due to a well-timed cold. My sister went through all this plus hauling Mom into Kaiser and clearing out the apartment with a broken ankle while hosting five people in her home for 2-3 days, plus Mom on Thanksgiving. Are we glad November is over? We are definitely giving thanks.
MOM STOPPED PEEING ON ME. THANKS, CARE HOME!
Improved Health in a Care Home
All I want for Christmas is . . .. Sometimes it’s the small things that make you happy, like when your mother quits peeing on you. I am happy to report that there have been many improvements in my mother’s physical and mental health since we moved her out of assisted living and into a care home.
Mom refused to eat during her last week in her assisted living facility and had to be hand-fed. She is now eating full meals, albeit eating mainly with her fingers, but who cares? Her ankles were swollen and bruised and now look great. She peed on the floor and on me when she first arrived, but now manages to get all the way on the toilet before letting loose. She didn’t sleep through the night. Now she does. She didn’t understand simple instructions, but now she does.
What a difference dedicated care makes. And increased socialization.
More Flexibility for Me
Now that Mom is settled in, I go there more than I have her over at my house. That is because my swollen foot turned out to be the onset of arthritis in another of my toes so supporting Mom’s weight in and out of the car and in and out of the bathroom is agonizing. Also, it just strains and pulls muscles in my back and neck, so I end up slightly miserable for days.
However, we did have her here for Christmas and had a lovely day listening to music, chatting, napping, drinking tea and eating cookies, and having lunch and dinner. While my husband and I were preparing dinner, Mom asked if there was anything she could do to help. Ummm. I wonder what she would have done if I had asked her to set the table.
Another time when she was here for dinner, I started to take her plate when we finished. Mom put her hand over mine and magnanimously told me, “No. Leave it. I will do the dishes in the morning.”
“Oh, thanks, Mom.” I left it and simply cleaned up after we got back from returning her.
Life in the Care Home
The staff of the care home is warm, friendly, funny, loving, attentive. I love going there. It is my home away from home, and how often can you say that about a care facility? People make all the difference. I chose a home based on how I felt about the staff. (Click here to read “Choosing a Care Home.”)
I have seen far more Hallmark movies than I ever have in my life. (Main character cannot form attachment due to some past grief, meets someone, relationship seems doomed, but then magically all is resolved on Christmas day. On to the next stupid predictable story.) I have watched my first “Ellen” show and many reruns of “Family Feud.” Daytime tv is amazing. But the jokes the staff, the five residents, and I make about the shows or even the commercials make it all fun and homey. (Click here to read “Care Home Suprises.”
Mom is very sweet. If I leave her at the time she has dinner at her care home, she always asks if I am eating with them and tries to offer me part of her dinner. She was eating a grilled cheese sandwich with tomato soup the other night and tried to give me her sandwich.
I told her, “Oh thanks, Mom. I’ll get dinner with Fred (my husband).”
“But do you have things like this?”
“Yes. We have bread, and we have cheese.” Everyone is laughing. I announce, “She is so sweet. She would give me the food off her plate.”
This is in contrast to when she thinks I’m trying to kill her.
Mom Seems to Feel Safe in the Care Home.
I mentioned Mom’s running monologue in my late November post. (Click here to read about the difficult trip transporting her 440 miles in “Meeting Financial Challenges.”) You can hear her talking, but it’s not loud enough to understand. A couple of weeks ago, we were taking her back, and she was actually talking loudly enough to hear.
Mom muttered, “These two people . . . coming to get me . . . coming to kill me.”
I decided to brave it. “Who’s trying to kill you, Mom?”
She looked at me startled. She didn’t think anyone could hear what she says. I let her off the hook and reverted to my usual coping strategy. “We’ll have to get Sherlock Holmes on it right away.”
Mom laughed. (Cue “Twilight Zone” theme music.)
There seems to be two parts of her personality operating—the kind, sweet, ‘normal’ one and the dark paranoid one. Makes me a little uneasy, but I know I can dodge her, gimpy as I am, if she decides to knife me in self-defense.
So I’m very blessed. No more getting peed on. I have a mother who would give me her own food. And I can outrun her if her thoughts that my husband and I are going to kill her get the upper hand.
Life is good.
CONTINENTAL DRIFT (WHERE AM I?)
Memory is an illusive thing, and when you visit assisted living facilities or care homes, you get used to residents not being quite clear on where they are or where they go on any given day.*
One of Mom’s fellow residents thinks the care home is her own home and that everyone else is visiting. There is nothing in her memory telling her that she moved here to receive the round the clock care she needs. The staff jokes that they are the maids.
Another resident thinks I can drive by her house to check on it and does not remember that it was sold long ago or that she is not in the same city.
Where Does My Mother Think She Is?
We moved my mother some 440 miles away from where she has lived for fourteen years to a care home near me in Southern California over the Thanksgiving weekend. Ever since, my siblings and I have all been wondering what Mom understands about where she is. Although I’ve explained it to her many times, it doesn’t stick in her memory. A conversation I had with her the other night was somewhat illuminating.
We were talking about her brother who spent Christmas holiday in Scotland with his granddaughter and her baby. Mom asked me, “How would you get from downtown London to here?”
“Well, you would have to take a plane to either San Francisco or Los Angeles and–”
“Well, yes, because we are in a different country, and you would have to fly across the Atlantic to get here.”
Mom is looking at me as if I’m mad. This information is obviously not what she expected.
I soldier on. “And then it would be a matter of renting a car to drive to here.”
“Oh. What does it cost?”
“Oh, gee. I don’t really know right now.”
“Well, what do you pay?”
“Mom, I’ve only been to England twice in my life, and the last time was about thirty years ago.”
At this point I think, what does it matter? Say anything. “Maybe 800 dollars or so?”
“Oh, well. That’s not going to work,” she says looking disappointed. I suspect she was envisioning a bus ride, and I have burst her bubble.
It seems Mom thinks she’s in England and has been planning an outing either for herself or for her brother so that they can get together. I can now tell my siblings Mom thinks she is in England. (And here we were just wondering if she understood she was in a different part of California, not if she knew which country she was in. Boy, were we way off!)
Memory Loss: No Passport Needed
The very next night I tell Mom about an article I read about how to stay warm at night without a huge heating bill. I describe the various suggestions, including adding curtains to windows that just have blinds or wearing a nightcap. Mom does not remember what a nightcap is so I try to evoke illustrations of “The Night Before Christmas” or A Christmas Carol. Nothing registers with Mom. I try the women’s version of the mop cap which seems to trigger her memory. I then confide that I cut off the toes of single socks and wear them at night over the sleeves of my pajamas and up over my wrists.
Mom likes that idea and suddenly comes out with, “Well, yes. People think it’s warm here in the States, but it gets cold.”
I am so impressed. Tonight she knows what country she is in.
In the space of 24 hours Mom has placed herself on two different continents. I’m wondering if she’s on to something. Maybe this is Pangea coming back to us, making crossing an ocean unnecessary. Or, as close to the “Star Trek” transporters as we are going to get. Whichever, it is a very exciting prospect and definitely lessens the importance of an unreliable memory and remembering where you are.
*Click here to read “Swiss Chalet, a Sweet Delusion” which describes Mom’s belief that she had bought two chalets and went to one when she got tired of the assisted living facility.
INCONSISTENT MEMORY VS. NIGHTLY RITUALS
I always thought that dementia sort of followed a general path. Longterm memory stayed the longest. Short term memory went, and everything in between was up for grabs. I’m finding out that it is not quite that simple. I have found with my mother that there is inconsistent memory–sometimes there, sometimes not. There are also consistent memory lapses that become nightly rituals.
My conversations with Mom generally go pretty well, albeit with several explanations and helping her with (or guessing) her intended responses. However, I have to be prepared for the shifting of understanding from one day to another–the inconsistent memory. For example, some days she thinks she is in England. Other days she knows she is in the States. (Click here to read “Continental Drift.”) Some days she has the delusion that the people on TV are looking in through a window at her. Then occasionally she knows it is simply TV. It is that inconsistency that intrigues me.
Nightly Ritual #1
However, there are certain things that never change in her mind, resulting in a nightly ritual that we follow.
Mom is completely unaware of her current surroundings and the people she spends her day with. The two male residents in her care home spend the day in their bedroom. The four ladies spend the day in the living room, sitting in their own particular recliners. It is not a big room. If I pull up a kitchen chair next to Mom, I can touch ‘Betty’ in the next chair.
I visit every night after their dinner. This time was suggested by the staff so that Mom can stay up later, and we can have an easier conversation on our own. Mom is already dressed for bed and sitting in her wheelchair instead of in her recliner. This puts Mom next to Betty’s chair-side table. Every night Mom asks me about the two photos on that table. Every night I explain who the people are. Betty is in both.
“Who’s Betty?” My mom asks.
“Betty’s the lady who sits here.” I indicate the recliner next to Mom.
Mom is trying to conjure up the woman who sits by her every day without success.
“Your roommate,” I try.
Mom’s expression becomes even more disbelieving. “I don’t have a roommate,” she retorts. “What do they call her? I’ve never heard ‘Betty.'” She’s annoyed and going to put me in my place.
“They call her Betty, Mom.”
Every single night. I even turn the photos away so Mom can’t see them. She picks them up anyway.
Nightly Ritual #2
The other part of the ritual is:
“Suzanne, do you know if there is a toilet here?”
“Yes, it’s the first door down the hall.”
“The hall?” I point behind her and she turns around searching. “Do you have to go to the bathroom, Mom?”
“You were just coming out of the bathroom ten minutes ago, Mom, when I got here. Are you sure you have to go again?”
“Or do you think you could wait until right before bed?”
“Okay. Yes, I can wait.”
Nightly Ritual #3
And that, of course, leads to the next part.
“Where am I sleeping tonight?”
“In your bedroom.”
“I have a bedroom?”
“Yes, it’s down the hall.” I’m pointing again.
“Down the hall?” She’s looking again.
“Yes. ‘Teresa’ and ‘Sarah’ have a room. ‘Dave’ and ‘Jim’ have a room. And you and Betty have a room.”
“Do I have . . . ?” She points at her body.
“Your pajamas? Yes, all your clothes are there. You’re already in your pajamas.”
She doesn’t believe me. She’ll never believe me. We do this every night, but she doesn’t recall any of it. Nothing about the hall is familiar to her, and she doesn’t remember Betty is sharing her room or even what Betty looks like. (No need to pay for a private room, people.)
Nightly Ritual #4
By this time, the rest of the residents are all in their beds. The staff are getting ready for the next day, preparing meds, doing whatever breakfast prep they can do in order for things to run smoothly in the morning. In the course of time, chopping or stirring sounds come from the kitchen.
“What is that noise?” Mom asks with concern.
“That’s Anne getting breakfast ready for tomorrow. She’s in the kitchen.”
“There’s a kitchen?”
“Yes,” pointing yet again. “Right next to the dining area.”
“The dining area?”
(I’m screaming inside, patient outside.) “Yes, that’s the table you all sit at.” I’m pointing again. It’s literally ten feet away.
She’s peering at the table. For her, it’s the first time she’s ever seen it although she sits there three times a day with the rest of the residents.
Nightly Ritual #5
More kitchen noises.
“What’s that noise?”
(Aggggggh!!) “That’s Anne cleaning up the kitchen.”
(Give me strength.) “She’s the main lady here who takes care of you. You like her very much.”
Every night. We go through Rituals 1-5 every night. So, when the night comes when she asks, “Why are those people staring at me through the window?” it’s a welcome variation. I can leave wondering why her concept of tv changes from day to day instead of focusing on the frustration of the nightly rituals.
And no, it doesn’t help that I’ve pulled the drapes and there are no windows uncovered. That would require logic. Something in short supply these days.
For other posts related to memory, click here to read “Mom Discovers I Am Her Daughter,” click here to read “Continental Drift (Where Am I?),” and click here to read “Dealing with Delusions and Memory Loss.”)
DEALING WITH DELUSIONS AND MEMORY LOSS
Every now and then, I share something going on with my mom, such as increasing delusions or nearly complete loss of short term memory. I am sometimes asked, “How do you deal with it?” The first thing I say is that I write about it. I have this blog to help me express and share my feelings and experiences. I always found that putting something down on paper helped me process and understand it. Otherwise, it just ping-pongs around my brain without any resolution. But there are other strategies that I find I unintentionally use.
Accept the Change of Roles.
By the time a parent suffers from dementia, most of us have related to our parents as peers for a long time. (Well, maybe we change our language a little bit.) It is sad to experience a parent losing memories, being confused, and having delusions, but it is not threatening. I am not a confused insecure child with a parent who, for example, has mental health issues that are scary to me. A child does not understand what is going on and is not equipped to take care of the parent, although he tries to do that very thing.
As an adult, I can easily move into the caregiver role just the same as most people do as their parents age and become increasingly dependent. The parent with dementia becomes much like a toddler. They need a lot of reassurance, care-taking, help with communication, soothing from fears, and explanations of what is happening at any given time. All this is done with love and respect for the person inside.
Delusions: Don’t Panic!
It is important not to think that every downward step is here to stay, that this is how it will be from now on.
Earlier this week, my mother asked me, “Have I told you what has been going on here for the past two weeks?”
She then went on to tell me that a group of people from England were staying with them.
“Oh, how nice,” I responded, thinking she was viewing her fellow residents in a favorable light.
“No, it isn’t,” she retorted.
She went on to describe how odd these people were because they never left, except for one man. Mom seemed somewhat incensed that tourists would never leave the house, that they were eating all their food, that they never spoke at dinner time, and that they expected the staff to just take care of them. However, her biggest outrage was reserved for the fact that these tourists had given no one any idea of how long they were staying! How rude!
This was an obvious delusion which held fast regardless of my questions as to where these supposed “tourists” slept, what the staff said about the situation, and other logical responses. I could just imagine staff being non-committal as Mom asked when the other residents were leaving. LOL.
Mom repeated the story three times as I responded, asked questions, commiserated with her regarding the ‘situation,’ and offered some explanations.
But, there hasn’t been a word about it since. That doesn’t mean it won’t come back. It, or something quite similar, may very well resurface at a later date.
However, that night I didn’t go home thinking, “Oh, god. Now she’s perceiving her life this way, and that’s how it’s going to be from now on.” Instead I thought, “Well that was interesting. I wonder how she’ll be tomorrow.”
And ‘tomorrow’ and since, there hasn’t been another word about it. What I’m saying is, you cannot depend on consistency, so there is no reason to panic and think this is the new normal.
Find the Humor.
Humor is always an excellent coping skill for any situation. It is in both our personalities that my mother and I laugh a lot about annoying situations. It is so good for her to laugh, for me to laugh, for us to laugh together. We speak for the resident cat as we imagine what she is thinking. We make jokes about ourselves. In our opinion, we are hilarious. This keeps Mom in a good mood and definitely helps me “deal with it.”
Enjoy This Time.
Would it sound odd if I told you that I really enjoy this time with my mother?
For the most part, we talk about what went on today which allows Mom to respond with her natural intelligence, ask appropriate questions, display her personality, and see the humor in even frustrating events.
I am more relaxed around her now than I have probably ever been in my life. In the past three months, my relationship with her has improved enormously. I used to be a bit nervous and frequently had to make allowances/excuses for her comments or behavior based on what she went through in her life. Now, I thoroughly enjoy being around her. She is consistently sweet, something I am not used to.
This is a healing time for our relationship. When she dies, I will feel much differently than if she had died three months ago before I had this opportunity for daily contact. This time is a gift to me. I don’t visit her every day because I feel I have to. I visit her because I enjoy being with her. If she changes and becomes combative and difficult, I still will have this time to remember.
So that is how I am dealing with ‘it’ (delusions, loss of memory). I’m aware that some of these strategies may not work at all stages of dementia, for everyone, or when the relationship is different—a spouse, a friend, a sibling. My mother is three and a half years into this disease. I don’t know what the entire journey is going to be like, but this is where we are right now.
Because this entire blog is about dementia, many posts cover delusions and memory loss. For just a few related posts, click here for “Inconsistent Memory vs. Nightly Rituals.” Click here for “Mom Discovers I am Her Daughter.” Click here for Creative Conversations,” and click here for “Happy Birthday to You: Birth and Death.”
MOM DISCOVERS I AM HER DAUGHTER
There are memory surprises in dementia. Most of the time, these surprises tend to be upsetting as you realize your loved one has misplaced or lost another memory. However, sometimes the surprises are wonderful, endearing, and comical. And, you just have to laugh.
I see my mother every day. She knows I’m coming because the staff gets her ready for bed first after dinner and sits her in a comfy spot to wait for me. Mom also asks them if I’m coming, so I know she knows who I am. That being said, every night when I leave, I tell her, “I’ll see you tomorrow, Mom.” It is always a complete surprise for her because she doesn’t remember that I am there every day. She will also sometimes make comments that indicate she doesn’t know when she last saw me. But she knows me.
How She Lost Me
A couple of weeks ago, Mom asked me if I had her brother’s address. She wanted to write and thank him for a postcard he sent her. I told her I did, as well as his email address. She seemed surprised. I let her know we keep in contact. I innocently related how I have had his street address since I went to England many years ago, and that we stayed with him.
We then got into a two-hour conversation about her side of the family, covering a few generations. I told her what I remembered and asked her questions. Her long-term memory is still good. She was surprised that I knew so much about her family history, and kept asking me how I knew. I told her I remembered things she had told me over the years and had also gotten a good family tree from her brother. She continued to be astounded, and I was feeling very accomplished and appreciated.
Then she burst my bubble.
“How are you connected to my side of the family?”
How She Got Me Back
I leaned forward and placed my hand on her arm. “By you giving birth to me?”
Mom was floored and speechless for a moment and then opened her arms for a big hug. “Come here and give me a hug! I haven’t given you enough hugs in your life!” She would hardly let me go. It was as if she had found her child who had been lost decades ago. What a celebration! She was so happy.
I was laughing and giving her big hugs. However, on the inside, I was baffled. She knows I’m her daughter. What happened? Later I told myself, “Well, maybe it was because our conversation went back in time, and she lost track of the here and now.”
The next night she greeted me, “Hello, Suzanne. And what have you been up to today?” We were back on track.
Then she did it to me again.
Who Am I When I’m Someone Else?
A few nights later, she said to me, “Since I last saw you, a lady came to visit. She was very nice, and she knew all about my family.”
D’oh!! (to quote Homer).
Again, I leaned forward and touched her arm. “That was me, Mom.”
I should read my own blog posts. I recently wrote about how fluid things are with dementia and that a change does not necessarily mean that is how things are going to be from then on. (Click here to read “Inconsistent Memory and Nightly Rituals.”)
My own daughter reassured me, “Well at least you know she thinks you are a nice lady.”
True. And she was very happy to discover I was her daughter. You don’t get that kind of authentic display of affection every day.
It is funny, and you do just have to laugh.
(Click here to read another related post, “Dealing with Delusions and Memory Loss.”)
UPSIDE OF DEMENTIA, III: PRESERVING FAMILY HISTORY
When a parent has dementia, preserving family history almost seems to slip away before your eyes. This is the time to talk to your loved one about whatever they can remember, which will most likely be their childhood. It is also the time to reach out to extended family for more recent information.
Mom asks me questions about her family because she doesn’t remember much beyond the childhood and young adult stages of her life. Most of the time I can fill her in, but sometimes I can’t.
One of her brothers settled in Africa, married, and had two children. I know my cousins’ names, and that is all. We’ve never met them. I don’t know if they still live in Zambia or if their mother, who was from Yugoslavia, is still alive. Their father, my uncle, died years ago.
Preserving family history is a precious undertaking, and certainly at least knowing about remote relatives is important even if there is little likelihood of ever meeting them. I have tried searching for my cousins on Google without success. Mom’s questions as well as my own spurred me to reach out to my remaining uncle who lives in England for whatever information he has. This has led to finding out my cousins left Zambia and moved to South Africa decades ago. Their mother is still alive. I now have information about employment, marital status, and current names. This is a huge help which will allow me to find out even more. A few more years, and this information would no longer be available to me. Carpe diem! Seize the day!
Much like having aging parents makes gathering family history pressing, so does dementia when it strikes at any age. There is little opportunity left to find out information, so reaching out to other relatives is a vital resource. I urge you to do it. Now.
Click here to read Upside of Dementia, I: New Relationships.
Click here to read Upside of Dementia, II: Conversation.
CHOOSING A CARE HOME
Finding that right care home in which your loved one will live, possibly for the rest of his or her life, is rather daunting. You choose the location parameters. You have a budget to help you narrow things down. Then, what?
I visited several facilities when I was looking for a care home for my mother. I am happy to say that only one was truly depressing and elicited a resounding “No, I would never place my mother there.” That place was a large facility. As the designated staff person took me on a tour, I was dismayed to see residents lying face down on sofas in the hallway or holding their heads in their hands out in the grounds alone. It had the feel of a State mental hospital or the homeless section of any big city. It was depressing. No amount of interesting animals on the grounds or daily exercise or activity time could make up for the atmosphere.
Everywhere else I visited was a home in the true sense of the word. These care homes were houses in residential areas that appeared no different from their single family neighbors. Generally they were intended for six residents, sometimes eight. Some had nicer furnishings than others. Some had more interesting menus. In some, all the residents were in their bedrooms watching tv. In others, residents were socializing in the living room or tv room. Some had nice yards; others not so much. Staff varied, as well.
I gradually developed certain criteria that helped me decide which care home to choose:
1. Ease of Communication
I knew it was important that my mother be able to understand the staff. Language difficulties make life even more difficult for people with dementia. They have enough trouble understanding what someone wants them to do. If they have to guess what someone is saying, it’s not going to go well.
2. Amiable Staff
I also believed that staff personality was vitally important. A resident becomes reluctant to even ask to go to the bathroom if staff seems stern, impatient, resentful, or frustrated. A cheerful, encouraging, patient, and friendly staff eases every day and makes the resident feel loved rather than a burden.
3. Level of Socialization
There seemed no point in a lovely living room that was covered in plastic. Clearly no one spent any time there. An opportunity to socialize was important. Maybe it is easier for the staff if residents stay in their bedroom, but it seemed a lonely cell-like arrangement to me.
My Care Home Decision
When I made my decision, I based it mostly on the staff. It wasn’t the prettiest home I’d seen, but the staff was awesome—protective, outgoing, lively, attentive, kind, loving, patient, and understandable. Most of the residents spent the day in the living room rather than their bedrooms. There was even a resident pet to add entertainment and a homey feel.
With the increased attention and socialization, Mom improved after moving there. She started eating again. Her swollen and bruised ankles returned to normal. Her mood lifted. She no longer cried and stated, “I hate it here” as she had at her assisted living facility. It pleases me no end to hear her bantering with the staff and calling them “honey” or “lovey.”
Just like a job that is made or wrecked by the people you work with, a care home is made by the staff. I highly recommend making that your first priority.
FORGIVE AND FORGET: HUMOR WITH DEMENTIA
It’s a blessing being able to have a sense of humor about yourself and others. One doesn’t usually expect that someone with dementia can retain that wonderful coping skill, but it is possible, at least for a while in any case.
I was sitting with my mother at her care home, talking with her and teasing the staff. Mom said to me, “I don’t know what you’re going to do when I’m no longer here.”
I startled. “What?”
“Oh, I see.,” she responds slyly. “You’ve got me . . .” (pointing down) “underground, you naughty girl.” She’s laughing.
I’m laughing, too, but also wondering what the heck she’s thinking. She is clearly making the connection that coming to visit her is a fixture in my daily schedule. However, where is she planning on going, confined to a wheelchair as she is? I just can’t picture her hopping a bus, nor even knowing where she would ask to go. Or is she contemplating returning to Northern California where she was previously living?
“Well, I may not be” (pointing) “here. That’s all,” she explains. Still laughing about my assumption that she was talking about her eventual death, Mom raises her chin and places a hand over her chest. “It’s a good thing I’m a forgiving person. It’s one of my . . .”
“Finer qualities?” I fill in.
“Yes. I’ll forgive you. Forgive and forget.” She is magnanimous, and I’m still trying to figure out how I ended up needing to be forgiven.
“Well, thank goodness,” I say, relieved to be let off the hook.
Practically choking with laughter, she adds, “Of course with me forgetting is easy.”
“Lucky for me,” I laugh. This is priceless, I think. She’s able to see the humor and make a joke at her own expense.
Mom may have dementia, but she can manage to joke about it and zing me at the same time. I have to work hard to keep up.
Surprisingly, there are many humorous aspects of dementia. Several of the posts on this blog include humorous occurrences or conversations. For a few, click here for “Immigrations and Dementia, click here for “Mom Discovers I Am Her Daughter,” click here for “Confabulation Can Be Wonderful,” and click here for “Care Home Surprises.”
CARE HOME SURPRISES
When my mother entered a care home, there were certain things I never expected I would be doing, such as explaining about HPV. However, when one spends time visiting a loved one, one gets involved in the oddest things. I call these incidents ‘little care home surprises.’
These surprises can be a memorable conversation I have with the residents, or a strange activity I get roped into. Sometimes it is an interaction I have with the staff, or an interaction I observe between the residents. They can be pleasant or unpleasant or indifferent. What qualifies them as care home surprises is quite simply that I never ever imagined they would happen.
The example below is a conversation I never thought I would be having at a care home. I think it is a good example of the care home surprises that make visiting, um, interesting.
Sometimes when I am visiting my mother, the residents are watching a tv show or movie. Questions tend to arise. “What’s going on?” is the most common. It is very hard to follow a plot when you have dementia. Often I explain what is happening in a scene or give a summary of the plot if more is needed.
And then there are the commercials. Given the over-dramatization of ‘problems’ that the product is touted to solve, these commercials can cause a bit of alarm and a lot of confusion for the residents.
Last week one of the commercials was a dramatized plea to get parents to vaccinate their children against HPV. It started with snippets of both boys and girls telling the camera, “My parents didn’t do anything. I got HPV.” “My parents didn’t tell me. I got cancer.”
Care Home Surprises, Example A
“What’s HPV?” one of the residents asked me.
I bravely launched in. “HPV stands for the Human Papilloma virus. It is a sexually transmitted infection that can lead to cancer.”
“Fortunately,” I continued, “we now have a vaccine available that is able to largely protect people.” I explained that the point of the commercial was 1.) to remind parents to get their children vaccinated and 2.) to vaccinate their sons as well as their daughters, because males can end up with cancer, too. People tend to think it just causes cancer in women.
“It must not be very common,” my enquiring-minds-want-to-know lady stated.
“Oh, it is. It is very widespread, which is why it is so great that this generation of kids will be largely protected.”
“Oh.” General head-nodding except from two ladies who were asleep. Well, I guess they were nodding also, just not in quite the same way.
My mother, when I turned back to her, was looking at me with her famous you-must-be-kidding look that I know so well. At least I didn’t get chastised for talking about sex. Hey, I was just answering the lady’s question.
This conversation was not what I expected when I arrived that day. It’s just one of many little care home surprises that come my way. Visiting a care home is definitely not boring.
CARE HOME HUMOR: GRACE
“Grace” is one of the residents in Mom’s care home. She is very serious, having lost any intentional sense of humor. However, without meaning to, Grace provides laughs for the staff, for some of the other residents, and definitely for me.
Grace is a tiny lady. Her dementia is far enough along that it is quite difficult to understand what she is saying as most sentences seem to be random strings of words. However, sometimes you can glean the overall intended message or at least respond in a way that acknowledges her emotions.
One afternoon when I arrived, Anne was doing Grace’s nails—cleaning them, filing them, and then applying nail polish in Grace’s favorite rose pink color. This procedure took place at the dining table as I was visiting with Mom and listening to the music, often singing along.
After a while, Anne rose from the table and told Grace to keep her hands on the table top to allow the polish to dry, which Grace dutifully did.
Anne decided to take a photo of Grace for Grace’s son and encouraged her to smile.
“Oh, that’s a great photo!” Anne beamed and showed the photo to Grace. Then she came over to show it to me. Grace had a huge genuine smile. It was a wonderful photo, and I said so.
“I never get such a big smile out of her. Her son will be so happy to see this.”
Anne went back to the dining area. “We got a great photo this time, Grace. Hallelujah!”
Vina, the other staff that day, leapt into the spirit of the conversation with “Thank you, Jesus!”
Grace said, “You’re welcome.”
CARE HOME HUMOR: GRACE AND THE CAT
The resident cat at Mom’s care home is a beautiful bi-color mask and saddle feline that Anne rescued. The residents love Kitty. To say that Kitty is a tad overweight is being kind. She lives to eat. Kitty’s weight tends to be the subject of much of the humor from the residents and staff.
If the staff is in the kitchen, Kitty is right there meowing and pressing against their legs until they can hardly move without tripping over her. She wants a treat, preferably her tuna. If the refrigerator or a cabinet is open, Kitty has her head right in there examining the contents for likely goodies.
One late afternoon, Grace was already placed at the dining table in her wheelchair after a trip to the bathroom. It was close enough to dinner time that there was no point in transferring her to her recliner only to have to transfer her back into her wheelchair for dinner. The rest of the residents would be brought over soon.
Anne was finishing preparing dinner with Kitty close on her heels with her every movement. The meowing was piteous. Kitty clearly thought she was starving.
Anne has been trying hard not to feed Kitty so much and eventually raised her voice sternly. “You already ate! I’m not feeding you any more!”
“Okay,” said Grace.
Anne didn’t hear Grace from the kitchen, so I piped up. “Anne, Grace thinks you were talking to her.”
“Oh, my God!” Anne flew out of the kitchen to Grace at the table. “Oh, Grace. I wasn’t talking to you. I was talking to Kitty. I’ll feed you. Of course I’ll feed you dinner.”
“Okay,” said Grace. Grace sort of goes with the flow.
I believe that Kitty got her own back that day, making Anne the brunt of the humor. But really, it is Grace that makes it all work.
CARE HOME HUMOR: UNPERTURBED GRACE
“Grace” is one of my favorite residents at Mom’s care home. Her dementia is advanced. She doesn’t say a lot, but generally conveys that “It’s good.” She likes the home. She actually thinks it is hers. Grace gets cross sometimes. And scared sometimes. And many times, she just makes us laugh. Her humor is special. It is unintentional and arises out of just who she is. We love her.
Grace sleeps quite a bit in her recliner during the day. Frequently when she wakes, it is with a start and an exclamation of some kind as she reorients to where she is. Sometimes, it is clear she has been dreaming and is a bit frightened.
A few days ago, we had a small scare. Dave likes to remain at the dining table after lunch for a while and listen and sing along to the music. Sometimes he nods off a bit but will eventually get up and go down the hall to his room for a nap. This particular day he must have been positioning himself to get up by turning sideways in the chair and then nodded off before making the effort of rising. The next thing we knew, he had fallen backwards onto the floor.
Staff checked him out, got him up in his chair, and bandaged a scrape. Dave was sent to his room. Apparently, you are never too old to be sent to your room.
A while later, Grace startled out of her sleep with a “What happened?”
“Well, we’ve just been listening to the music, Grace. And Dave fell out of his chair.” I responded.
“Okay,” said Grace.
I imagine I could have said that the place caught on fire, and we had all evacuated the premises while leaving her behind, and she would have responded the same. She is “okay.” Except when she gets cold, and then she is quite cross. However, if you want someone who can roll with the punches of life, that’s Grace.
DEMENTIA AND PARANOID DELUSIONS
Over the past three years and nine months, my mother has had a few paranoid delusions. This is common in people with dementia, but I wondered what caused it.
Mom’s Paranoid Delusions
When Mom was in the hospital after her accident, she was very frightened by the hospital staff. The first time staff moved her from her bed to a chair so that she could eat dinner and they could change her bedding, she thought that the chair would tip her down a chute to the basement where she would be murdered. She begged me not to leave her alone “with these people.”
Mom has an intermittent delusion that the TV is a window through which people stare at her. This paranoid delusion also first appeared the night I spent with her at the hospital. It resurfaced when we moved her to a care home where she was exposed to daily TV after almost three years of not ever watching it. She frequently asked me why “those people” were staring in at her. How rude! Mom got very agitated. She even worried about me when I left because “those people” were still outside. Although Mom has largely adjusted to the concept of TV, she will still at times express irritation that the people on TV are staring at her.
My mother also thought that my husband and I were going to kill her. That was a fun one. One day when we were returning Mom to her care home after a visit with us, I overheard her muttering in the car, “These two people coming to get me, coming to kill me.” Now, if I had heard this during the 7 1/2 hour trip bringing her down from Livermore, I would have disputed it as a delusion because we really were just about ready to kill her. It’s not paranoia if it’s true, right? However, by this point we were long over our stress and not about to do her in. Yet at least briefly, my mother viewed us as strangers who planned to kill her.
What is it about dementia that dredges up the primal fear that others have ill intent and even mean to kill you?
Why Do Dementia and Paranoid Delusions Coexist?
Mom’s main caregiver told me that almost all of the residents with dementia in their four homes are on or have been on anti-anxiety meds. I can understand that. When you don’t know where you are or what happened 15 minutes ago, when you don’t remember you have a bedroom, when you are totally dependent on others, of course that is going to produce anxiety.
Are the paranoid delusions the extreme product of this anxiety? Are people who have suffered from anxiety prior to dementia more apt to have paranoid delusions?
I was very curious to know and started reading articles on dementia and paranoid delusions.
Dementia and Paranoia
I found many articles about how to cope with paranoid delusions in dementia patients, but little about what caused it. In the article “Understanding Paranoia and Delusions and Some Coping Strategies,” The Alzheimer Society in Cornwall, Ontario, Canada states “that the person with dementia often feels that they have little control over their life and little insight into what is happening around them. It is often easier to blame someone else such as the caregiver for events that they do not understand.”*
Blame didn’t really seem to me to be the problem, except in regard to missing objects. Fear did.
The article went on to attribute paranoia to misinterpretations of what the dementia sufferer sees and hears due to memory loss and visual spatial problems. Basically, “changes in the brain” was the cause.*
Well, yeah, but I still wanted to know why exactly cognitive dysfunction led to fear. I got nowhere.
Walk in Their Shoes
In one or two posts I have likened an adult with dementia to a toddler. The need for reassurance, explanations, help with communication, and care-taking are the same.
Maybe you don’t remember what it was like being a young child. There was a lot of fear—fear of loud noises, of the dark, of being alone, of strangers, of dogs. The thin line between reality and fantasy led to fear of monsters under the bed, unknown terror in the hallway, and a host of other threats. And you knew instinctively that you were powerless and defenseless.
So consider people with dementia. They don’t know where they are or who they are with. Even if they have a roommate, they forget that they do and feel alone at night. Loud or “strange” noises (the dishwasher, the vacuum cleaner, staff clattering in the kitchen) cause them to startle. They can’t remember the other residents. The staff is more recognizable, but not completely, especially if it rotates. Who is this person dressing me, taking me to the bathroom, bathing me? Do I have a home? Where is my home? How long will I be here? Am I sleeping here tonight? Do they have a bathroom here?
Shake in Their Shoes
All this not knowing is frightening. I think people with dementia have the fears of a young child, but lack the remedy of climbing onto Mother’s lap for protection or having Dad show them there is no monster under the bed and then leaving a nightlight on and the door open.
The next time a child hears the vacuum cleaner, he can remember that Mom explained she uses it to clean. The noise still startles him, and he doesn’t like it, but at least he learns what it is. My mom asks me every single day what the noise is when the dishwasher is going or staff is preparing a meal. She does not remember. She does not learn.
You have to have memory to learn.
If a noise is that concerning, imagine how it is when you can’t learn where you are or who is there with you, or if anyone is there with you. It is like waking up with amnesia every moment of your life. Amnesia and something akin to paralysis if you are no longer ambulatory. You are completely vulnerable–powerless and defenseless. You can’t even run away.
It might make an interesting movie, but it is a hell of a life to be living. No wonder they are afraid and expecting danger everywhere.
*Note: (To read the entire article, click here to reach The Alzheimer Society and then search for ‘Paranoia and Delusions.’)
My post “Inconsistent Memory vs. Nightly Rituals” describes the frustration of trying to orient someone with dementia to their environment. It also expands on the TV delusion. To read it, click here.
For a look at the scary delusions and hallucinations someone can have at a hospital, click here to read “Irrational Desires and Hospital Nightmares.”
“Mom Stopped Peeing on Me. Thanks, Care Home” describes how I dealt with Mom’s delusion that I was going to kill her. Click here to read that post.
To understand why I felt on the verge of throttling Mom, click here to read “Meeting Financial Challenges,” especially the section regarding the trip.
Click here to read “Dealing with Delusions and Memory Loss” for more about delusions.
DEMENTIA AND THE E.R.
I had a span of four days two months ago when I went to the E.R. three times—twice for my mother and once for my husband. Going to the E.R. is never fun. Even if you have all your faculties it can bring out negative reactions and behaviors. Being in pain may cause one to really despise the wise-cracking nurse who otherwise would be fun to be around. The unpleasantness of being in that cold and stark environment, being left waiting for hours, and wondering what the heck is wrong with you just doesn’t make for a pleasant time.
When one is in the E.R. and has dementia, it is a bit different for both the patient and for the caregiver.
E.R. Staff Will Drive You Mad
Intake staff will persist in directing their questions to the patient. As the person accompanying a loved one with dementia, it gets really old having every single person ask “When is your birthday?” “Where were you born?” “What is your height?” Mom just looked at me mystified and concerned. I had to keep explaining that she doesn’t know that stuff on any day. It in no way reflected effects of the “seizure” which sent us to the E.R.
You might think, why didn’t you explain about the dementia. I did, but it didn’t change anything. I even came armed with a list of her diagnoses and of all her medications. The intake people took it, and it was never seen again. It did not travel with her to her cubicle in the E.R. or upstairs when she was eventually admitted to the hospital. None of the information was put in her chart or on the computer. I was left doing the best I could from memory. So annoying when you feel you really came prepared and organized. My advice is carry 3-4 copies, not just one.
The E.R. Is Not Dementia-Friendly
Once we navigated the intake questions and were finally seen by a doctor, the tests began. The lab work went okay, but the x-ray experience was special as in not-in-a-good-way special. Mom needed an x-ray of her heart. According to the technician, the doctors don’t want the patient to lie down while the x-ray is taken. The technician and I did our best to make this easy for Mom. However, since she is little, her wheelchair was too small to accommodate placing the plate behind her. The technician decided Mom would simply get out of her wheelchair and sit on a stool in spite of my expressed opinion that this was going to be difficult. Yep. Even once we managed the transfer, Mom kept listing to port, in danger of falling off. Mom gets really scared if she thinks she is going to fall. Sitting on something with no back and no sides was very scary for her. I was saddled with one of those heavy protective aprons as I tried hard to hold her up straight enough to get a good picture. We really needed a third person to help us with her. It was ridiculous. It took forever. Tell the damn doctors we can’t safely do it.
The IV was a disaster. Mom had been moving her hands almost constantly during her waking moments for several months as part of her agitation. Was she going to leave this thing alone that she could feel in her arm? No. I first discovered she had knocked it out when the monitor quit showing her pulse. As I was trying to put the little device back on her finger, I lifted her blanket, and noticed her gown was bloody. I called the nurse who ignored my efforts to tell her Mom couldn’t help it and lectured Mom on not touching the IV area. Oh, and also please leave your arm extended so that the blood pressure cuff works properly, thank you very much. The nurse decided that maybe the IV needed to be better wrapped to protect it and Mom. You think? Mom pulled it out a second time. No blood this time, just the IV spilling out and soaking her. Another change of gown. This time a different nurse came and had the sense to put it in her hand which at least made it easier for me to see what Mom was doing. I just held her hands. We eventually gave up on the pulse device altogether. It was no sooner put back on Mom’s finger than she had it off again.
When the doctors finally decided to admit Mom during our second trip to the E.R., there was more fun. Again the repeated useless questions, the repeated physical tests for stroke. At one point, after we had been there about six hours already, the admissions doctor came to see Mom and put her through her paces again. When he asked her to raise her arms, she started waving her arms around with delicate hand gestures and a childish look on her face. I looked down at her and said sternly, “This is not ballet class.” I know, it was mean, but I’d been up all night the night before with my husband. I was ready to drop, and those metal chairs are not comfortable. I actually climbed up on the foot of her bed at one point to lie down for a while.
Escaping the E.R.
I didn’t need a doctor or an x-ray or an MRI to tell me. I knew Mom had suffered a stroke. So many of the signs were there—the typical one side weaker than the other, the change in her vocabulary (The stethoscope was “icky,” “felt all messy” rather than cold.), decreased comprehension, the above-mentioned childish behavior, and the clincher–the fact that she never complained during the entire seven and a half hours we were there, never asked when we were going home, never muttered under her breath. That was definitely atypical. Mom just stared up at the ceiling. She was delighted to get into the hospital inpatient room with warm blankets. I had to answer all the same questions all over again, but got out of there by 11:40 and was home shortly after midnight.
And that was the beginning of the seven-day hospital stay. More about that experience and how to advocate for someone who cannot speak for themselves later.
For other posts that also deal with loved ones in the hospital, click here for Irrational Desires and Hospital Nightmares; click here for Dealing with Delusions and Memory Loss; click here for Inconsistent Memory vs. Nightly Rituals; and click here for Meeting Financial Challenges
Dementia: Is It Alzheimer’s?
To date, Alzheimer’s can only be diagnosed with certainty after death by examination of the brain. However, there are certain ways symptoms progress that lead physicians to conclude a person most likely has Alzheimer’s disease. Hence, the informal diagnosis of Alzheimer’s in someone still alive.
There is much current research with the goal of being able to diagnose Alzheimer’s while a person is still alive. Our population is aging fast and cases of dementia are on the rise. Therefore, such a discovery is high on the list of priorities in medical research. Until that discovery happens, what do we know?
The Types of Dementia
The Mayo Clinic https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447 lists various types of dementia. They are Alzheimer’s, vascular, frontotemporal, and mixed dementia, as well as dementia with Lewy bodies. Then, there are the additional disorders with a large dementia component, such as Parkinson’s.
Note: Someone can have some of the symptoms of dementia due to other disorders, such as substance abuse or major depression. However, here I would just like to focus on dementia independent of other “temporary” causes.
Differences in Symptoms Per Type of Dementia
Again, per the Mayo Clinic, the following progression of symptoms help determine what type of dementia a person has. Clearly, there is a lot of overlap.
Alzheimer’s Disease: Memory loss of recent events gradually progresses. Language difficulties, impaired judgment, and mood changes are common. Rarely occurs before age 65. (See below for more detailed information regarding the stages of Alzheimer’s.)
Vascular Dementia: Onset is abrupt, caused by a large stroke or a series of smaller strokes. In comparison to Alzheimer’s, memory loss is generally milder and physical disability is worse. Repeated strokes cause additional brain damage.
Frontotemporal Dementia: Personality and behavior problems are usually the first symptoms to appear. Memory loss happens later. Usually occurs age 40 to 70. (The December 2017/January 2018 edition of AARP magazine describes this disorder. Read this very sad article, “What Happened to My Husband?”)
Dementia with Lewy Bodies: Concentration problems and disorientation are usually the first symptoms. Visual hallucinations are common. Active symptoms can alternate with periods of apparent normalcy. Stiffness, tremors, and slowed movement may develop.
Mixed Dementia: A triple whammy of the symptoms of Alzheimer’s, vascular dementia, and dementia with Lewy bodies.
Additional Causes of Dementia
Huntington’s Disease: Severe decline in thinking is the hallmark symptom. Age 30-40
Parkinson’s Dementia: Symptoms mimic dementia with Lewy bodies. However, the problems with body movement begin a year or more before there are cognitive difficulties.
Creutzfelt-Jakob Disorder: There is rapidly worsening confusion, disorientation, and problems with memory, thinking, planning, and judgment. Depression, mood changes, difficulty walking, muscle stiffness also mark this disorder. Rare. Age 60
Traumatic brain injury: Signs are memory loss, depression, explosiveness, impaired speech, and slow movement. Symptoms can show up years after the trauma.
Primary progressive asphasia: Impaired speaking and language are the primary symptoms. Short term memory is usually not affected. Age 50-70.
To make things even more complicated, symptoms of Alzheimer’s or dementia with Lewy bodies, for example, can be accelerated by eventual strokes in the elderly.
Also, there are ways dementia can be brought on that affect the progression of symptoms. For example, a medical emergency can abruptly bring on symptoms, effectively skipping the early stages of dementia.
The Stages of Alzheimer’s Disease
Because Alzheimer’s is the predominant label we hear, it may be helpful to know how the National Institute on Aging (NIA) describes the stages of Alzheimer’s. (See “Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging.”)
Mild: There is some memory loss, and small changes in personality. The person may not be able to solve simple math problems or may lose the ability to plan and organize. For example, making a grocery list and then being able to find the items in the store may become impossible.
Moderate: At this stage, there is more obvious memory loss and confusion, more trouble organizing, planning, and following instructions. The person may need help getting dressed, start having problems with incontinence, and have trouble recognizing family members and friends. They may not know where they are or what day or year it is, become restless, and begin to wander. Repeating movements late in the day and having trouble sleeping are common. More serious personality changes may include making threats, accusing others of stealing, becoming physically aggressive, cursing, screaming, or grabbing things.
Severe: The person needs help with all daily needs. They may not be able to walk or sit up unassisted, not be able to talk, and often cannot recognize family members. They may have trouble swallowing and even refuse to eat.
The NIA describes these stages as Mild, Moderate, and Severe. However, you could also describe them chronologically as Beginning, Middle, and End stages.
So, What Type of Dementia Is It?
Yes, it might be Alzheimer’s, but it also could be one of the other types of dementia listed above. Yet again, it could be dementia of a type and due to causes that we just don’t know about yet. We are living longer now. It is not strange that our brains, as well as other parts of our bodies, are showing wear in new and sometimes inexplicable ways.