Dad’s Neurology Assessment – Part I

I took dad to see the neurologist this week.  It was very cold – 30’s and lightly snowing though not sticking to the ground.  I got out dad’s winter jacket for the first time this year.

Also dad didn’t have socks on, so I pulled out socks from his drawer and made him put those on.  It was just too cold to let him continue with bare feet inside his slippers.  He never wears shoes anymore because the slippers are more comfortable.  Last winter I bought him rubber soled slippers since he was using them as shoes.

I stopped at the office and picked up the envelope prepared for dad’s medical visit.  It contained the list of his current medications and a form for the doctor to write a diagnosis.

After we arrived, we spent the first 30 minutes waiting while I filled out more forms.  I had already completed the 4 page form they sent to my house which had questions on his medical history and family medical history.  In addition now I had to complete insurance information and sign that we would be responsible for charges not paid by insurance.

Dad asked a few times why we were going to a doctor.  I told him it was just for a checkup and nothing to be concerned about.  When the doctor introduced himself, he said he was a neurologist and specialized in memory issues.

First the doctor asked dad if he had any memory problems.  Dad said “No.”  He did not have any memory problems.  “Wow!” I thought.  No wonder dad doesn’t worry!  He isn’t aware of any memory problems.  Mom used to worry all the time the last year before she died because she couldn’t remember my children’s names, or later, because she couldn’t remember if I even had children.

Dad’s lack of worry makes life so much easier for him.  He takes each day as it comes and doesn’t worry about the next one.  I should learn from him!

The doctor then asked him what year it was.  Dad said “2012”.  What season?  Dad said “winter” which wasn’t too far off considering the weather and the coat he was wearing.  “What month is it?” asked the doctor.  Dad said “December”.  The doctor asked the day of the week, but dad didn’t have an answer for that one.

Next he asked dad to spell the word “world”.  Dad did fine.  Then he asked dad to spell “world” backwards.  Dad was a little off on that one.  He told dad 3 words and asked him to repeat them.  Dad did fine on that.  He asked dad to write a sentence on a piece of paper.  Dad wrote: “What is your name?”  The doctor told him his name and a little about himself.  Then he showed dad a drawing of 2 overlapping pentagons and asked dad to copy the drawing. Dad did pretty well.

Then the doctor asked dad what the 3 words had been (that he repeated before).  Dad didn’t remember.  I wondered if I would remember either!

The doctor asked about previous medications like Aricept and Namenda.  I said dad had taken them in the past but I guessed they didn’t help much as he had been taken off both.

Then the doctor did a little physical exam, looking in dad’s eyes, testing his reflexes, etc.  He took a tuning fork and hit it to make it vibrate.  He held it to dad’s head, chest and arms and asked if he could feel the vibration.  Yes, dad could.  Then he held it to dad’s feel and legs.  Dad couldn’t feel that at all.  I guess that must indicate poor circulation, but the doctor didn’t say anything.

He then commented that dad does have memory problems but he would also like to obtain the brain scans from 5 years ago to see if dad’s stroke could have some impact on his current memory problems.

I also mentioned  that dad’s poor hearing made conversation difficult and makes his memory seem worse than it is.  The doctor agreed and said it was too bad dad doesn’t wear hearing aids as it would help in his communication skills.  As it is, dad has about given up television and even listening to his music tapes.  He might forget he has them, but I suspect it is hard to hear them too.

After the exam, the doctor asked us to make another appointment for dad to do some paper and pencil tests.  He told dad they were easy.  I asked if it really took 3 hours, and he said the whole appointment takes 3 hours with the testing, doctor reviewing the test and then doctor discussing results with us.

He also decided not to add any new medications today but may in the future after he reviews the records from dad’s previous doctor.

For the ALF paperwork, the doctor just wrote “dementia” on the form.  He said dad’s geriatric doctor had written “advanced Alzheimer’s” on the paperwork she sent over.  The neurologist didn’t consider dad to have “advanced” Alzheimer’s.  And he wanted to evaluate how much of the memory deficit might be due to the previous stroke.

I would agree that dad’s dementia isn’t “advanced” as there are so many things he can still do.  However, I do think it is getting worse over time, so it must be more than just the old stroke.  I am very glad I arranged for dad to have this assessment, and wish I had arranged it sooner.

I also wonder if the doctor will send feedback to dad’s geriatric practice.  I think they tend to ignore his Alzheimer’s disease and just treat any physical symptoms that come up.  This should be a good way to keep the geriatric office informed about dad’s needs as well.

In addition, I hope this assessment informs dads’ ALF on dad’s abilities.  I think the fact that he doesn’t hear questions and instructions make them presume he doesn’t understand them.

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

Dad’s Thermostat

I have been working with dad’s ALF for a few months to get dad’s heating straightened out. Finally they had the maintenance man take a look at dad’s heater.  He found it was switched to “heat pump” instead of “heat” and that caused it to make a lot of noise and not heat efficiently.  I said I thought it had always been noisy. (And I bet it has been on the wrong setting for years — ever since dad moved in.)

Since then, the maintenance staff has been going into dad’s room and adjusting the heat if he turns it all the way up or if it gets turned off. They suggested a cover be put on the thermostat to keep anyone from changing it and I agreed.  They didn’t have one that fit, so they had to order one.  Last week they finally put it on.  But before I got a chance to see it, dad broke it off the first night.  It was probably on the wall less than 4 hours when dad broke it off!

I asked dad on if he had broken off the cover from the thermostat and he said he didn’t remember. I am pretty sure he did break it off, and maybe he is doing most of the heat adjustments himself.  Though I still doubt he removed the plug or opened the back door.  Anyway, the heat has been staying better this past week since they fixed the setting to heat instead of “heat pump”.  It is way too cold for a heat pump!  The temperature has to be well over 50 for a heat pump to work and it has been in the 40’s lately.

I am pleased his ALF has worked with me on this and a bit frustrated that it took months of complaints before anyone looked at the heater to see if it was on the right setting! Now that it is set to heat, it heats up much faster.  This makes it more efficient and maybe less likely to get too hot or too cold.

I took dad out to lunch on Tuesday and chose his blue jacket for him to wear outside. As soon as I helped him zip it, he said: “This is a really nice jacket.  Where did I get it?”  I told him I had bought it for him from a catalog when before I brought him north because he didn’t have clothes for a winter climate.  I was glad he liked the jacket, though he has been wearing it for 3 years already.  About four more times while we were at lunch dad commented on what a nice jacket that was and how he really liked it.

Other than commenting on the jacket, dad really didn’t talk that much at lunch. He chose different items from the menu than he usually does and ate very well.  I think part of the reason he doesn’t talk is that his hearing is so poor.  I did have to repeat everything the waitress said when she took his order.  He probably lip reads and she wasn’t looking straight at him.

I have been taking him to the same place every week rather than vary the places we go. This way he has come to know his way in and where to sit.  He knows right where the men’s room is and walks straight to it.  They have enough variety on the menu that he can have pasta or seafood and that is what he likes most.  And I also like the fact that it is easy to park fairly near the door and there are no curbs or steps for him to negotiate in his walker.

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

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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