Category Archives: behaviors

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.

 

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?”

Uh-oh.

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.”

“Oh.”

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.”)

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.

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?

Geographical Factors  

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

Moving Out  

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.

The Trip

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.”)

Moving In

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.

In Retrospect

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.

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.

The Decline  

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.

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.

The Game

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.

Level Two

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.

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.”