Tag Archives: dementia

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.

Tiny Dancer

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

Socialization and Dementia



Is someone with dementia able to socialize with new acquaintances, or is socialization limited to family, known for a long time, and interactions with staff, vital to survival?

A Great Setup for Socialization

Because Mom is in a care home, I thought she would enjoy socializing with the other five residents as well as with the staff. I couldn’t have been more naive. Mom has been in her care home for almost nine months. She still doesn’t even know the names of the other residents let alone displays enough interest in them to talk to them. I find this loss of socialization and the state of isolation it brings very sad and incomprehensible.

Lost Opportunities for Socialization

Mom has at least formed a good opinion of one of the other residents. “He’s such a nice man,” she will say of one of the two male residents. It is the only positive statement she has made about any of the residents. The other male resident is bedridden, so it is not surprising that Mom doesn’t know who belongs to what is merely a voice down the hall.

There are three other female residents, as well. All the four women spend each and every day in the living room together, sitting in the same chairs, each covered by a blanket. Mom is aware of only one of them.

No one can fail to notice Betty. Betty is the source of drama at Mom’s care home. Betty goes on a jag about every three months and gets nasty and rebellious, refusing to eat or take her medications. Her appalling behavior, including stomping out of the front door with her walker and screaming for the police and berating the mail carrier, inevitably escalates to a call to the police and the ensuing 72-hour hold at the hospital.

Betty is equal opportunity mean. She distresses the staff as well as the other residents and any unsuspecting visitors.

Mom doesn’t like her. Betty targets Mom because Mom gets visitors, otherwise known as me, whereas Betty’s children refuse to have anything to do with her for some unfathomable reason. I have arrived and been told that Mom has been crying because Betty was being a harridan again.

Because Betty makes life miserable for everyone, staff has been trying move her elsewhere, preferably to some gulag in Siberia. So far, no cigar, not even poor quality vodka.

Then there is Sarah. Sarah is a very sweet, gentle lady. Mom’s awareness of Sarah is limited to the following:
Sarah sneezes.
“Bless you,” I respond.
Mom asks (every single time), “Who are you talking to?”
“To Sarah. She sneezed.”
Mom peers over the great expanse of approximate five feet that separates her from Sarah as if she never knew someone else was there. This is in spite of the fact that any time Sarah is taken to the bathroom or to her room for an after lunch nap, Sarah passes within inches of Mom’s feet. And yet somehow, Sarah does not exist for Mom.

The final resident is Grace. Mom completely ignores Grace when Grace starts talking.  Admittedly much of the time, Grace is talking in her sleep. Grace sleeps much of the afternoon due to age and medication. When she is awake and moving, Mom will come up with some truly stellar questions and remarks.
“Is that a real person?” Mom asks.
“Yes, Mom.” (You’ve got to be kidding me. Really? No, Mom. that is really an artificial intelligence creature placed there to take up space.) That’s Grace. She was taking a nap.” (I may think exasperated and snotty, but I somehow never express it in the moment. I am a coward.)
Mom then launches into one of her soto voice tirades. I can only get the gist of her disapproval that someone dares to be sleeping out in the living room all afternoon long. I guess when Mom falls asleep, time just stands still, and it does not violate the strict manners of a proper lady.

Socialization with the Staff

Mom does much better with the staff. No, she still can’t remember any names, not even Anne’s who is there five or six days a week. However, Mom banters and jokes with the staff, if by joking we include threats to kick them in response to their reminder to keep her feet and arms in so as not to get hurt while being wheeled to and from the bathroom. They act as if she is funny whereas my eyes get wide, and I want to apologize.

I guess they are accustomed to her aggressive/critical ‘humor.’ I remember Anne’s story about lunch being delayed for some reason while all the residents were waiting at the table. She related how she told them, “Sorry we are running a little late. Lunch is coming.” Mom replied, “So is Christmas.”  Ha! ha! ha!

I don’t find it funny. I find it rude and critical, but then I grew up with Mom, and Anne didn’t. Anne thinks it indicates that Mom is still sharp in some ways. Right. Sharp as a knife shoved in your gut and then twisted. But, we all have a different perspective, and I am truly grateful that the staff seems to find her amusing rather than acerbic. However, If Betty ever does get shipped out, Mom may be in trouble.

Socialization Conclusion

So, the answer to my question is that, in my mother’s case, she is not able to socialize other than with me, with my husband, and with my sister when she visited, and with the staff. She is unable to reach out to the residents around her. They serve no purpose for her, and that I find very sad.

 

Sundowning and Dementia

Recently Mom has exhibited increased agitation and anxiety especially at night. When symptoms increase at the end of the day, doctors refer to it as sundowning.

Mom’s Symptoms of Sundowning

Previously, Mom went to bed around 6:00 and slept through the night.  Now instead, she talked to herself until 10:00, repeatedly wadded up her blankets, called for staff several times during the night, maneuvered herself sideways in the bed or scooted up against the headboard until her neck was cranked. Overnight staff repeatedly repositioned her and settled her. For the first time, she fell out of bed.  The second time it happened, it became clear she was trying to get out of bed, forgetting that she couldn’t stand or walk.

I consulted with Mom’s doctor who prescribed a sedative commonly used for sundowning in dementia. It would calm Mom and make her sleepy, theoretically anyway.

The Effects of Sundowning During the Day

All this activity during the night naturally resulted in increased napping during the day.

My visits with Mom deteriorated to five or ten minutes of conversation at some point in the two-hour visit, or none at all. The rest of the time, she was deeply asleep. Occasionally, she talked to herself in her sleep. The snippets I could hear over the tv music channel were “She didn’t have that on her,” an annoyed “Don’t look at us” as if she was talking to staff, and a complaining “She comes in and sits down and gets up and leaves.” I wondered if she was referring to me.

A Related Complication

A few days during that three-week period Mom was actually awake and alert. It was then, I discovered that even during the day she no longer understood that she couldn’t stand or walk. During my visit, she tried to get out of her recliner three times. I watched her scoot herself forward until stymied by the challenge of the footrest.

“Do you need something, Mom?” I asked.

“Oh, I was just wondering what we have for dinner.”

Since that was my first experience of Mom attempting to get up, I thought it was an aberration and joked, “Oh, a little bit of this added to a little of that.”

She laughed and sat back.

The second attempt came about twenty minutes later.

“Do you need to go to the bathroom, Mom?”

“I thought I’d turn the oven on.”

Okay, so now I understood she was truly concerned about dinner and thought it was her responsibility to provide it. So this time I answered her seriously.

“I think Alice is getting dinner, Mom.”

“But does she have enough for . . .”  Mom gestured around the living room where three of the other residents were sitting.  “ . . . all of us?”

“Yes, she is cooking dinner especially for all of you.”

“Oh. Well, that’s nice of her.”

I thought I would put her mind further at rest by actually going to the kitchen. I told Alice that Mom was trying to get up to help with dinner, and that I was just trying to settle her mind by checking on it. Then I returned to the living room with the affirmation that indeed Alice was making dinner and all was under control.

Less than ten minutes later, Mom made her third attempt. What now, I wondered?

“What are you trying to do, Mom?”

“I thought I’d set the table.”

Oh, great.  “It’s too early Mom. It’s only 2:20. It’s more than an hour and a half before dinner.”

Before I left, I let Cassie also know that Mom was trying to get up. Cassie promised to keep an eye on her.

Ready for Another Solution

At the end of the three-week trial, we all agreed the sedative was not working, and I sent an email to her doctor with the report, which was basically “no improvement.”

The doctor has other possible solutions.  I just hope we don’t have to go through too many before finding one that helps.  I miss being able to spend time with my mother awake.

 

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.’)

Related Posts

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.

 

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.

For the other “Grace” posts, click here to read “Care Home Humor: Grace,” and click here to read “Grace and the Cat.”

 

 

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.

For other “Grace” posts, click here to read “Care Home Humor: Grace,” and click here to read “Unperturbed Grace.”

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.”

For other “Grace” posts, click here to read “Grace and the Cat,” and click here to read “Unperturbed Grace.”

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.

The Set-Up

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.

 

To read other posts related to care home, click here for “Choosing a Care Home,” and click here for “Mom Stopped Peeing on Me. Thanks, Care Home!

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.

“Yes.”

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.”

 

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.

The Results

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.

 

To read related posts, click here for “Mom Stopped Peeing on Me. Thanks, Care Home!” and click here for “Care Home Suprises.”