Alzheimer’s and Dad

This week I met with the new companion that will be visiting dad while I am on my winter vacation. She is a retired nurse and is just looking for part-time work to fill in some of her free time.  I feel fortunate in that she has done this type of work before.  She was recommended to me by a friend.

We met at dad’s assisted living facility and I showed her around his room while he was sitting in the lounge. I showed her the thermostat where I have been finding the temperature settings have been changed.  I asked her to monitor that regularly.

I showed her his refrigerator and told her the extra items he likes to have in it, like Coke or pretzels or cheese. I introduced her to dad and they spoke briefly.  As usual, dad wasn’t very talkative.

Today I met my son and grandson at the assisted living facility. My grandson wanted to play games on the iPad and I sat him in front of the end table near dad so dad could follow the conversation.  Still, dad didn’t seem very engaged.  I just have to satisfy myself with the fact that he can be stimulated by our presence.

My grandson was excited to be there and to play the games. My son had promised to take him shopping at Target afterwards, so he was ready for that too.  Some days my grandson acts very shy though today he did very well. However, he didn’t want to go up to his great grandpa to say goodbye.  Even though he visits a lot, I think he is still a bit afraid of great grandpa because he doesn’t talk that much.

Whenever I try to talk to dad I always have to repeat myself partly due to his hearing I think, but also because I think he doesn’t really focus. When I arrived today I first checked dad’s room while I put away the snacks that I brought him.

Again I found the thermostat set to cool while the temperature was set to 90 – as high as it would go. I took some pictures with my cell phone. Then I reset the setting from “cool” to “heat” and I set the temperature to 75.  I asked dad when I got back to the lounge if he was resetting the thermostat himself.  I showed him the pictures I had taken.  He didn’t know if he was doing that or not.

One of the most frustrating things about Alzheimer’s disease is that there is no way for me to know what dad is able to do and what he can no longer do. I think it is possible he is changing the settings himself in an effort to warm up or cool down the room.  However, since there were times when the actual heating unit was unplugged and the back door was open, I am pretty sure that dad is not the only one turning off his heat.

I sent another email to the director asking that they just check his room and reset the thermostat regularly. And since she offered to lock the thermostat, I said maybe now is the time to do that.  I feel like I need to be checking it many times a day and I just can’t, so I have to find another solution!

So here I am, still stressing along, even as I make plans to get away for awhile. I will still be here until the end of the year, so that is time to keep checking on this issue and anything else that turns up.

On the one hand, I am most anxious to get away and just walk on the beach. Our weather has turned cold and rainy and I get depressed as the days get shorter and darker.  On the other hand, I know I will want to be able to check in on dad and will feel the stress of being far away.  I am never totally stress free, and maybe I never will be.  I just need to learn to take one day at a time and not pre-worry about what is ahead.

Dad does seem healthy and that is a very good thing. I had a nice visit with my son and grandson and that was very nice too.  In a few weeks dad will have his first visit with the neurologist who will be evaluating his Alzheimer’s disease.  This visit will be just one hour for them to open a file and determine what to do next.  I find myself wishing that would be sooner as I am confused about where dad is heading right now.

Posted in Alzheimer's Disease, Caregiving, Companion, Dementia, Eldercare | Tagged , , , , , | 14 Comments

Geriatric Care Manager Lifts a Weight off my Back

Thursday I met with the Geriatric Care Manager (GCM) that I had met with in July 2012. See “Meeting the Geriatric Case Manager” for a description of when I met with the Geriatric Care Manager the first time.  At that time she helped me sort out some of my questions and decide how to proceed.  Her input was extremely helpful to me again this week.

Before we met together, I brought her to dad’s room to meet and talk briefly to dad. Dad had just had lunch and was starting to fall asleep in his chair, so they didn’t talk long.  But she had met him 2 years ago, and I was able to tell her about his recent behavior.

First we talked about why I was looking at other living situations for dad. I am happy that dad is now stable where he is, but afraid I might have to make a quick decision in the future.  We discussed the possible issues and solutions.  She said she could be my backup while I am on my winter vacation.  In other words, if I have to make a change in dad’s living situation while I am away, she can do the legwork for me and make the arrangements.  I would fly home, but I wouldn’t have to do everything from a distance.

She pointed out that the memory care unit I had been considering offers very little more than dad is getting right now. They have nursing staff 7 days a week for 2 shifts which looks far better than the 1 weekday LPN that dad’s current ALF has.  But on the other hand, dad has very little need for nursing right now.  He can get from his room to the dining area without help and often sits and spends time in the lounge.

The Geriatric Case Manager thought that since dad is stable and I don’t want to move him more than once.  I might have to move him to a nursing home if his medical needs ever get so great that an ALF isn’t licensed to provide them.  Or I might look at an ALF with an “Enhanced license” that could provide specific medical care – such as ambulation transfers, etc. — he needed if he can still avoid a nursing home (my greatest hope!).  Until then I should just wait to see what happens next.

She did also suggest though that I have dad assessed with a neurologist who specializes in Alzheimer’s and other dementias. We have a good one in our local medical center that she recommended. (Interestingly, another neighbor just mentioned referral to that same neurologist this past week).  She said I should discuss it with dad’s doctor, but she thought it would be helpful for me to have a baseline measurement of where dad’s Alzheimer’s disease stands right now.

Then it would be easier for me to judge any changes I think I see in the future. The neurologist would do another assessment in 6 months or a year and note how fast or slow things are progressing.  That would help me plan dad’s living arrangements rather than trying to estimate what is happening and guess what the future will bring.

The Geriatric Care Manager was also able to give me names and phone numbers of organizations that could help me find new companions for dad for this coming winter. She has worked with several of them herself and felt confident in their ability to do the job I needed done.

In addition, she gave me the names of some “Transition Movers” or “Senior Movers” who could help dad make a move should one become necessary. As usual, I was all worried about the logistics of how I would move dad’s stuff and pare down his belongings if a move were necessary, and now I can let that worry go.

I did hire transition movers when I moved mom and dad from their mobile home to their first assisted living facility. This was a tremendous help as I had to empty their mobile home in less than a week and get their new apartment furnished.  The transition mover had worked with that ALF before and was able to tell me exactly what to bring and help set it all up in the new rooms.  In addition, he arranged to take some of the rest to charity and ship other boxes to my home for the photo albums and other sentimental items I wanted to keep.

We met for almost 2 hours, chatting about other issues along the way. In the end she said she will send me a bill at the end of the month.  But she will only charge me for one hour of her time.  I felt such relief on the way home as I had been so stressed about everything that is happening in my life right now.  Things seem to pile on sometimes, and it is very helpful to have an experienced person to talk to and help with the decision-making.

Posted in Alzheimer's Disease, Assisted Living Facility, Caregiving, Dementia, Elder Care, Eldercare, Geriatric Case Manager | Tagged , , , , , , | 4 Comments

Today

Today I visited dad as usual for a Sunday morning.  Dad was not in the lounge where he usually is.  Instead I went to his room and I found him almost asleep in his chair.  He asked what was new and I told him about my day so far and that it was cold out.  We talked a few minutes and then he laid back his head and was half asleep again.

I took out my iPad and tried to find some pictures to show him. I didn’t find anything though.  After another 20 minutes or so, my son arrived and knocked on the door.  He came in with enthusiasm and dad talked to him a little.  Then dad went back to resting in his chair and my son and I were having a conversation.  It is hard to keep dad engaged lately!

Towards noon I reminded dad that it was almost lunch time and did he want to use the bathroom. He asked if we were going out and I said no, we were just going down to the dining room for him to have his lunch.  I think the only thing that gets much enthusiasm from him lately is when I ask if he wants to go out for lunch.

But today is very windy and feels quite cold. Also I don’t take him out on Sundays as all the restaurants are either closed until 4 or they are very crowded on Sundays.

When dad got up to go to the bathroom, he still seemed confused and his walk was very shaky. As we walked him to the dining room, he seemed very thin and frail.  I need to check and see what his weight was for the beginning of October, but while the aides were all in the wellness area, they would soon be helping residents with lunch, so I just left.  I will ask that on Tuesday.

One of the things that was troubling today was that dad’s room seemed quite cool. I went to check the back door and it was closed and a new sign on it says not to open that door, which was good to see.  I checked the thermostat and it was set to 80, but it was clearly not that warm in the room.  I moved it higher and checked it was on “heat” and it was.  Something was wrong.

I checked the wall heater under the window which should have been making heating noise and generating heat. It was not on.  The fan button was turned to high.  Then I looked for the plug.  It was not plugged in to the socket!  Someone had unplugged the heater!  I suspect it was the person who came to clean the bathroom but have no way to know.

I walked down to the wellness center and told the aides that dad’s heater was unplugged. They all seemed surprised and were sure none of them had done it.  I am getting so frustrated.  I don’t want to complain every time I go in to visit dad!  But how can I get them to give him the attention he needs when there are so many people who come and go in his room every day?  The person who turns off the heat never stays long enough to see the temperature go down and see dad get cold.  It is hit and run with them.

I know dad makes the room very warm and it is hard for the workers to do their chore – whether making the bed or cleaning the bathroom – in such a hot room. But, when they turn off the heat and then leave, or open the door and then leave – they are setting dad up to have no heat later.  Then I find him cold when I get there.  What happens on days when I don’t go in?  Does he sit and shiver for awhile?  How long does it take for someone to realize he has no heat?  What do I do next?

I am starting to wonder now if I should move dad to the memory care unit at another facility before it becomes necessary. That is, before his current ALF tells me he has to move, should I make the decision myself?  What is the basis for such a decision?  Is it based on the fact that he doesn’t seem able to figure out why his room is cold?  Is it because I expect better care at the memory unit in the medical center?

If I move him, it will be disruptive to his routine. Would it increase his dementia symptoms?  Would he get much worse?  The room he would move to is very small compared to what he has now.  They tend to try to keep all the memory care residents in the large central room where activities take place.  Would he be unhappy with that?  He likes to sit and snooze.  Would they make him be more active?  Suppose he couldn’t?  or wouldn’t?

I really can’t decide how to proceed. I want him settled into the right place for the winter if I will be moving him at all.  I don’t want to have to make a change during bad weather.  And I heard the facility he is at now has made some people move with very little notice – first into their memory care unit, and then out of it.  This is why I will not consider their memory care unit.

 

Posted in Alzheimer's Disease, Assisted Living Facility, Dementia, Elder Care, Eldercare, Memory Care Facility | Tagged , , , , , , | 10 Comments

Another Sign of Alzheimer’s Progression?

Dad seemed to be doing very well lately.  It is over 10 years since dad was diagnosed with Alzheimer’s disease and he has had poor short-term memory for quite awhile already.  Still his long term memory seemed good.  In the past 2 months, when I took him out to lunch, he has been eating better than he had in the past few years.  He completely finished his entre most times, whereas before he only ate half.  I was beginning to think he was going to stay stable for a long time.

However, in the past week, he had an experience that worried me. We went to his favorite restaurant where we have been going regularly lately.   When we arrived, he tried to get out of the car before I even got the handicapped sticker up on the mirror.  I said: “Wait Pop!” as I scrambled out of the car and to the other side to take out his walker.  After I set up the walker, I opened his door and dad tried to climb out.

He had forgotten to take off his seat belt and it was holding him back. He tried several times.  I said “Wait, – take off your seatbelt!”  He tried to lift it over his head.  My heart sank.  I never saw him do that before.  I reached across his lap and unsnapped the belt buckle and he climbed out.  I wondered all through lunch if this was another watershed moment.

Dad only ate half his entre that day. But when we got back into the car he sat right down and snapped his seat belt into place.  Maybe it was a fluke?  I worry about every small incident – is this a mark of deterioration or not?  I will only know in retrospect.  But for that day, it was a sobering moment.

Since then I have visited him twice, but only in his facility either in the lounge or in his room. Each time he has been quiet, though that is not unusual.  I try to draw him into conversations with comments, pictures and questions.  But for the most part, he looks briefly at the pictures and says he doesn’t remember to my questions.  I know I shouldn’t ask questions, but make statements instead, but there were days when he surprised me with stories about cousins and friends from long ago times.

Today I mentioned that I had watched the Roosevelt television series during the past 2 weeks. (Using the DVR I stretched it out rather than watching every evening and I can time shift to a bit earlier in the evening.)  I asked dad if he remembered the day when Roosevelt died.  He didn’t.  I was somehow surprised at that, as it was such a big historical event.  (I still remember when President Kennedy was shot – where I was, who I was with, etc.)  But for dad, the memories continue to fade.

Of course, I feel sad each time I see another indication of dad’s fading memory. I know I can’t change things, but that doesn’t stop me from wanting to!  I am now in the process of trying to line up three companions for the winter when I travel.  Some of the companions from last year will not be available again this year.  I will miss them because I like and trust them, and also because I need to find replacements.  I like to have the same people every year so dad will have continuity and they will know dad better too.  This process is also stressing me, since I won’t relax until I know I have at least 2-3 confirmed companions and one or two more as backups.

Sometimes I have to remind myself of why I feel so stressed and so busy. After all this is the retirement I waited for.  Why don’t I feel free to travel and do the things I always wanted to do?  The answer is obvious – I have to plan ahead to have someone cover for me and I have to be ready to return home at a moment’s notice if there is an emergency.  I wish over and over that my siblings would be of some help, but I have to accept that they simply never will be.

In every family, there is one responsible person who takes on the eldercare responsibility.  In my family, that one person is me.  My siblings have personal issues, mental health issues and perhaps financial issues that get in the way.  Most of all though, it is the lack of desire that keeps them from helping dad.

 

Posted in Alzheimer's Disease, Caregiving, Dementia, Elder Care, Eldercare | Tagged , , , , , | 12 Comments

Very Inspiring Blogger Award and More

Very Insp Blog pix 8-9-14 I have been remiss in acknowledging two more nominations for the Very Inspiring Blogger Award. Since I had received this award and made nominations for others on August 14, 2014, I am not going to repeat that now.  However, I am most honored and flattered to have received these nominations!  It is always a good feeling to know that you have touched the lives of others.

I also want to thank both Irene from Baby Boomers and More for her September 14, 2014 nomination and Sandra from Going Gentle Into The Night for her nomination on September 10, 2014.

I follow both Irene and Sandra’s blogs regularly and read them as soon as I am notified of their posts. They are also experienced in caregiving and have a lot of useful suggestions and support for those of us who are caring for a family member. Irene was the primary caregiver for her father who died from Alzheimer’s complications in 2007. Ever since she has remained active as an advocate for vulnerable adults in long-term care facilities.

Sandra cared for her mother who had several dementias including vascular and Lewy Body as well as Alzheimer’s disease. She presents many topics of use to those who are also caregivers including guides to Palliative Care and Hospice. I encourage all my readers to check out both Irene’s and Sandra’s blogs.

I also want to acknowledge that I have been absent from this blog for a few weeks again as I have been caught up in the other parts of my life.  I try to keep up with all the blogs I follow and comment when I can, but sometimes I can’t seem to free up the time to add some blog posts of my own.

I hope to add another new post within a few days now that I have finally finished a big project I was working on.

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Assisted Living Trials and Tribulations

Recently dad was seen by the NP from his physician’s office who diagnosed the lump in his arm as a sebaceous cyst.  She will check it again in 3 months. In the meantime the aides are to continue to follow it when they help him in the shower.  I don’t know if she checked on his rash or not since it was on the upper side of the same arm.

I noticed yesterday that dad’s rash is worse as he continues to scratch at it.  He also asked if I could have them cut his nails.  Since it was Sunday, I asked one of the aides about it, but then also emailed the nurse about these issues when I got home.  I was afraid I would forget by Tuesday when she will be in the office again.

Dad continues to be about the same.  I feel he is doing very well, but my son commented on Sunday about how grandpa asked the same question three times in quick succession.  I guess I am used to that now, but it does remind me that dad’s memory is getting worse even while he seems stable to me.

When I was visiting dad last week I also noticed that his polo shirt had a missing button and even worse, there was a hole where the button would have been attached to the shirt.  I asked dad about it but he hadn’t noticed.  I went back to his room to see his other shirts, and sure enough another shirt had a large piece missing from the collar.

It looked to me like the washing machine or the dryer at his assisted living facility has begun to catch onto his clothing.  In fact, I would comment that the “dryer ate his clothes”!  I took the second shirt to the nurse, who is also the one in charge of about everything else since this is such a small facility.  I pointed out that the shirt dad was wearing was also damaged.

Then I decided I had to go shopping for more shirts for dad.  One by one, I have been bringing home shirts that had missing buttons or other problems.  He also sometimes buttons the regular cotton shirts incorrectly so that the buttons don’t line up, or he just leaves the bottom 3 buttons undone.  I went shopping with my daughter on Saturday and we both were fairly successful with the holiday weekend sales.

I picked out 4 polo shirts for dad – 2 each at 2 different stores, and my daughter bought school clothes for her son.  I brought dad two yesterday to have him try them on before I ironed his name onto all of them.  It was while changing his shirt that I noticed his rash.  Dad doesn’t like to try on clothing, but he only had an undershirt underneath a long-sleeved shirt he was wearing open like a sweater.

The shirt fit well so yesterday I washed the other two shirts and ironed his name tags onto them.  Tomorrow I will bring home the first 2 shirts to put name tags on them also.  Usually they don’t lose his clothing but I like to be sure to mark new clothing with his name.  They do each resident’s laundry separately, but they have about 10 laundry baskets stacked in the laundry room each day.  I think the washing is actually done overnight by the night staff.

One problem with the laundry is that they put all his clothing into one machine and I think it is overloaded.  The colored clothing runs onto the whites and things don’t come as clean as they should.  I often bring home his jacket to wash myself so he won’t have to go a day without it, but I am not ready to start bringing home all his laundry.

When dad was first at this ALF, he had a red sweatshirt.  Soon he had pink underwear and pink-tinted shirts as well.  I brought that sweatshirt home and gave it away.  It wasn’t worth the chance that they would do the same thing again.

These are small problems in the day-to-day life of an assisted living resident.  Still, the issues build up.  I try to keep my complaints to a minimum, but yet I need to make sure they are aware of the problems.

Also this week I received a notice in the mail that dad’s rent is going up by 5% again in October.  This was not a total surprise as I think it has gone up about the same amount every year.  Still, it does add up and there is nothing I can do about it.  I just keep watch over his accounts and hope dad’s money lasts as long as he does!

Posted in Alzheimer's Disease, Assisted Living Facility, Caregiving, Dementia, Elder Care, Eldercare | Tagged , , , , , | 12 Comments

Dad’s Dental Appointment

Last time I wrote about dad’s chipped tooth.  I admit I worried about it more than I should have – as usual.  The day of his appointment I was so stressed I could hardly eat lunch.  My stomach just wouldn’t calm down.  I think I was afraid dad would refuse to go or wouldn’t behave once we got there.

I went to pick dad up about an hour before his appointment so we would have time to get dad ready and get to the dentist.  Dad was almost asleep in his chair.  I told him again that we needed to go to the dentist.  Again he asked “Why do I need to go to the dentist?”  (With his voice raised).  I said the dentist just wants to look at your front tooth.

I then asked if he wanted to use the rest room.  He did and then he let me get his jacket on and get ready to go.  They took an x-ray of his tooth.  Their x-ray room is the size of a walk in closet. I don’t know if this is the new thing in dentistry but I like the old way!

Then they took him back to a room and I went with him.  The dentist came in soon but then was interrupted by a phone call on his cell phone which took 10 minutes or so.  I noticed he did wash his hands and glove up before looking at dad’s mouth, but then he took the call and didn’t re-glove or re-wash his hands.  The dental technician also had gloves on and was putting cotton in dad’s mouth when the doctor’s phone rang.

I was so tempted to say something about washing hands, but didn’t.  I didn’t want to get dad upset by raising my voice above the clatter in the room.  Dad seemed to be quiet and cooperative and I wanted to keep that going.  In the end the dentist filed down the rest of the tooth to match the chipped part and then put a sealer of some type on it.  He might have done something to the enamel of the tooth as well.  Even though I was right there, I couldn’t tell what he was doing.

It took just over 30 minutes and he was done.  I took dad out to the waiting room and then went back to the desk to pay.  It cost $188 with some kind of reduction for lack of insurance.  I was glad to pay and have it done.  I so hope we don’t have any more dental visits.

Dad was amazingly good during the whole thing.  He didn’t need any Novocaine because it wasn’t broken to the nerve.  Whatever he was thinking, dad was nice and quiet and still.   I am still surprised, looking back, at how good dad was considering his protests before we went.  And I am so relieved to be done with that!

Sunday, just as I was beginning to relax following dad’s dental visit, one of the aides came to tell me about a lump she had found in dad’s upper arm when she gave him his shower that morning.  When she showed it to me, I noticed there was also a rash on the outer skin nearby.  I asked if the lump hurt and he said no, but the outer skin was itchy.  I asked the aide to notify the nurse about the lump when she came in the next day.

On Monday, I called the nurse  to ask her to arrange for his doctor to evaluate the lump.  She said the doctor wasn’t coming in until next month, but the nurse practitioner will be in next Monday.  I had already checked Google (naturally) and decided it was probably not serious, but should be checked out.  I said I would wait for the NP to look at him before I push for anything else.

Dad is already in his upper 90’s so I really don’t want to medicalize the rest of his life.  I don’t want biopsies, surgeries, etc.  Dad would be confused and not understand.  While this lump has been pointed out to him several times, he promptly forgets that it is there.  It doesn’t hurt at all so it probably is benign.  In any case, I have decided to wait for the nurse to evaluate it and try not to worry.

I took dad out to lunch again yesterday.  When I arrived he was almost asleep.  I asked how he felt, and he said he felt a bit dizzy – which is his usual answer lately.  He doesn’t drink enough fluids and he has had some dizziness since a stroke many years ago.  I asked if he felt well enough to go out to eat.  Right away he perked up and got ready to go to the restaurant.

Lately I take him to the same place each week.  It is easy to get him from the parking lot to the building and they have a nice menu.  Of course, dad orders the same thing each time, but he does vary the side dishes.  He has been eating very well this past month and finished his entry each time.  Yet, he still seems to have lost a pound in the last month.  He is down about 9 pounds in a year, but still above where he was after his hospitalization 3 years ago.

I brought along my iPad so I could show dad some pictures from long ago.  He enjoyed the pictures and asked where I got them.  Other than talking about the pictures, it is hard to keep him in a conversation.  Nevertheless, it was still comfortable and an enjoyable time for both of us.  I dropped him off and reminded him I will see him in a few days.  My schedule is a bit off this week due to meetings, but I will still see him as often.

I think I am getting better at taking one day at a time.  I see so much illness in my neighbors and friends that I am thankful for the stability we have achieved this year.  We still have spent a lot more time with doctors and dentists than I would have liked, but nothing is critical at this time.

Posted in Alzheimer's Disease, Caregiving, Dementia, Elder Care, Eldercare | Tagged , , , , , , | 10 Comments