Tuesday, January 25, 2011

Changing Clothes

One hot topic that pops up all the time on caregiver forums has to do with bathing and changing clothes.  It’s one of those things that, no matter what, will become an issue for every person with dementia.  They will get to the point where they don’t bathe and will not change clothes.  They may change into pajamas at night but even so, they will put on the same daytime clothes day after day.
You may think that’s horrible and wonder how they could stand to do that.  The truth is, they forget how to bathe and, if their closet is full of clothes, they can’t make a choice regarding what to wear.  It is easier to stay in the same clothes.
So, you might think that someone needs to help them if they don’t know how to do it.  That brings in another can of worms!  The person doesn’t know that they are having a problem and if you try to call attention to it, you experience a “catastrophic response” (tantrum) caused by not understanding/remembering what they have to do to accomplish a bath and changing clothes. 
I struggled with those tantrums for a couple months but after reading The 36 Hour Day and reading suggestions on the forums, bath time has become fairly easy.  That’s not to say there won’t be an issue here and there but for the most part, every Thursday we accomplish washing her hair and the bath.
It’s interesting that some folks on the forums are quite upset if bathing doesn’t happen on a daily basis.  Others think every other day is a must and some, like me, settle for once a week.  I know this all depends on the person because each person can become “ripe” at different rates.  At 94, Mom does not sweat and, in fact, is usually bundled up even in the summer.  She is not yet incontinent but we use Depends because her habits are not what they used to be and they help also.  So, at this point, once a week is good.
Then there is the question of changing clothes.  Like the bathing, we’ve gotten into a routine.  Every day I change the Depends for her and put lotion and fresh socks on her feet.  That goes like clockwork now and she never balks at it.  Even though she has fresh Depends and socks, Mom would wear the same clothes every day if I let her.  That’s where my decision point comes in.  I won’t let her wear the same clothes all week between baths but how often?  I’ve tossed it around in my mind quite often.
As I asked myself the question again this morning, I finally settled on an answer.  For now, unless she spills something, we’ll stick with changing to clean clothes twice a week and again if there is a special occasion.  In her current condition, I think it works fine and she seems content.

Sunday, January 23, 2011

Daddy and His Girls

Now that I am watching Mom go through this, I wonder sometimes how it impacted Daddy.  He was just 61 when he retired from teaching.  He was head of the science department and found he was forgetting meetings and names.  I can remember he would write notes to himself as reminders when I was growing up much as I have always done but the forgetting at that time in his life was different.
The year Daddy retired was the same year that my daughter Jessie was born.  Daddy was already a big part of life to my oldest daughter, Brandy, because I spent a lot of time visiting Mom and Dad from the time she was born.  When Jessie came along, Daddy not only had his little three year old granddaughter following him around but he was carrying an infant on his arm too.
My little family moved to Montana that year and Dad and Mom helped us move.  I think he just wanted to be sure that his daughter and his little ones were settled in.  I sometimes think if he hadn’t liked what he found out there, he would have packed us up and taken us home.  We settled in well though and Daddy liked the little town so after their time helping us, they took a train ride home.  We spent two years out there and wrote letters back and forth with Mom and Daddy every week.  They visited with my sister and her children a year after we moved and then came back a year later to move us back home.  While I enjoyed my time out there and learned a lot, I really missed being close to Mom and Dad and the rest of my family.  I was so happy to get back home!
My daughters quickly took up their special relationship with Daddy when we returned.  Daddy was the family babysitter, taking care of not only my little ones but my sister’s and sometimes those of my brothers.  Mom and Daddy would take care of two or six or more grandchildren at one time.  Daddy always said once you got past two, it didn’t matter how many you had!
It was a great time for the kids and while they had a lot of freedom on the farm, they had that firm and loving guidance of Grandma and Grandpa.
As time passed the kids grew older and my two were quite often alone with Mom and Dad.  At some point, I remember having to pack lunches for them because they said that Grandpa would put peanut butter on a cracker for them but then scrape it off before giving it to them.  By the time my girls were 11 and 8 – 8 years after Daddy’s retirement – it was obvious that it was time for them to take care of themselves at home rather than go to Mom and Dad’s.  Within a year, Daddy went to the nursing home and two years later he died.
During those years I was so caught up in my own life that, while I knew what was happening, it didn’t have the same impact on me as it did with the girls.  He was everything to them and they watched as they lost him little by little to Alzheimer’s.

Wednesday, January 19, 2011

Full Moon!

When I first began this journey with Mom, I found the full moon to have a radical effect on her.  How to accomplish any normal day to day activity – dressing, eating, using the bathroom, etc. – could be completely forgotten.  The loss of the ability to do these things frequently brought on tantrums.  Then a day later or sometimes even an hour later, she would go about her day as if nothing had happened.  I was not surprised that she would forget but I was surprised that the abilities would come and go so quickly.
Long ago Mom told us stories about this type of thing when caring for Daddy.  Although we watched Daddy take his journey through Alzheimer’s, for the most part we watched from afar.  Mom lived it every day and for awhile, my brother Ronnie lived with them and received firsthand experience.  Ronnie was there when Daddy, in a matter of seconds, went from knowing him as his son to running across fields and jumping three fences to get away from a stranger.
So, while we had experienced the disease, I found I had much to learn.  The most helpful tool initially was a book called The 36 Hour Day by Nancy L. Mace and Peter V. Rabins.  It was so helpful that I read much of it aloud to my husband during a trip we took last summer.  I learned about why Mom would throw tantrums and how I could work to avoid them.  I also learned about dealing with hygiene and safety issues and many other useful topics.  Reading the book by no means made me an expert!  It definitely helped but I continue to learn.
The things I have learned help me with times like these.  Today is a full moon and Mom seems to be feeling the effects.  The good thing is the full moon isn’t so disruptive these days because we have become accustomed to the behaviors and learned to work around or with them for the most part. 
Yesterday, Mom spent much of the day going from window to window checking the “cleaning” of the snow outside.  She thinks that people come at night to clean it because other people aren’t happy about it being cleaned.  A few minutes before 8:00 tonight, she came to us and said, “Why can’t I see outside?  All I can see is lights.”  We had to explain that it was dark outside and that she could only look outside if the lights in the room were off.  It seems like a common sense type of thing but Alzheimer’s has no common sense.
Today will be the same.  Mom’s first words to me were, “Did you look outside?”  In the last two hours I have lost count of the number of times she has asked.
Good news?  Steve installed the gate at the end of the hall and we no longer have to worry at night.  Funny thing was Mom watched him install it and thanked him when he was done!

Saturday, January 15, 2011

Great Grandma, Great Grandkids, Oh My!

I’ve always loved the time I have spent with my grandchildren.  When my now 12 year old grandson Dillon was in elementary school and his mom, Jessie, worked, he would come to my house each morning and I would give him breakfast and take him to school on my way to work.  Oh, how I loved those mornings with him!
The situation was a little different with my 9 year old grandson Kenny.  At that time, Jessie was a stay at home mom and although they live right next door to the school, my grandson was not happy about going to school when his mommy was right there!  There was no breakfast involved but before work each day I would drive the few blocks to Jessie’s house and walk Kenny to school.  I loved every minute!
The boys have spent many nights at Grandma’s house but not nearly as many as our 9 year old granddaughter Sophia and her 2 year old brother Anthony.  They became accustomed to sleeping at our house as infants and haven’t done well elsewhere.  Consequently, it’s easier for everyone concerned if they stay here.
Last night was one of those nights.  They arrived and settled in to play and watch TV.  It was so cute when Anthony dumped all the Hot Wheel cars and sat there saying, “Peepaw, c’mere!”  When bedtime came, he snuggled in to the rocking chair with me for two songs and then lay down to sleep without a peep.  Sophia sat with me in my chair and we watched some of her shows before she was off to bed.
While it was a wonderful evening for me and Steve, it was frustrating for Mom.  Every time Anthony would get out a toy, Mom would want to put it away.  She loves to watch them but at the same time, gets agitated by their presence.  For awhile she went to her room and closed her door!
This morning was no better because the normal routine was tossed in the air again.  Although I was awake, Mom was first up and dressed and I caught her trying to open the gate.  (Supplies are purchased for the half door and installation will be complete in the next day or two.)  Sophia came up next and I made breakfast for the three of us and then Steve and Anthony followed.  Anthony needed some snuggle time with Grandma when he first awoke – Sophia even joined us for a bit – and then the playing began!
Although part of the issue is the change of routine, another aspect of dementia is at play here.  Mom is at the stage where she is suspicious and delusional so she thinks the children are “getting into things” even when they are not.  Her distrust of them and inability to handle the mess is frustrating for me but I have no desire to give up my time with my grandchildren.
We just have to make these times work!

Tuesday, January 11, 2011

The Boss is Back!

We had such a fantastic weekend away!  We did learn one lesson – it’s probably not a good idea to eat Italian for lunch and Mexican for dinner at our age… J
While respite is much needed and much appreciated by a caregiver, returning sometimes brings its own set of issues.  It seems the issues vary based on the length of time away and in some cases, the personality of the interim caregiver.
My most frequent help in taking care of Mom is my daughter, Jessie.  Jessie is a stay at home mom with a wonderful husband and two growing boys.  She is not new to caregiving but has spent the majority of time on the other side of the relationship.  I spent many days, long nights and weeks taking care of her over the years because she has epilepsy.  While she still deals with seizures, she loves her life as a wife and mother.
Definitely because of the epilepsy, Jessie has always needed to be in control.  We always figured that she can’t control her brain and body so therefore she wants to control everything around her.  That need comes in handy when she’s taking care of Mom.  Jessie typically stays with Mom once a week over lunch time.  The duration is short because she has to get back home before school lets out.
When Jessie walks in the door, she’s in charge!  She makes Mom lunch and I think spends the rest of the time talking to her.  I know Mom thoroughly enjoys the visits and part of it is probably that they actually talk!  Jessie will carry on a conversation even when Mom is speaking gibberish!  Since the length of time is short and Jessie is in control, there are no issues after her visit.
My sister also helps with Mom, typically once a month for a weekend or long weekend.  Her stays have been 24x7 so she has to deal with a lot more than one meal with Mom.  She has the most difficult job and consequently, Mom tries to test her independence with me when I return.
If you follow my blog, you have read about all the fun I have had getting Mom to cooperate with certain necessary activities such as bathing or changing clothes.  It was a long road getting into a fairly quiet routine where Mom and I do what needs to be done with little fuss along the way.
Now imagine – every time my sister arrives for the weekend, the need to assert herself as the caregiver starts over from scratch!  Oh, my poor sister!  While I can walk into Mom’s room with Depend and socks in hand and say, “Let’s go do this!” and Mom just comes right along, my sister gets the response that I used to get, “I’ve been doing this all my life!” or “I’ve already done that!” when she hadn’t.
Even so, God love her, my sister keeps coming back!  I asked her today about a weekend in February.  Her response, “You’re killin’ me!” and then she wrote it down in her calendar.  J

Saturday, January 8, 2011

The Boss is Gone!

The long awaited weekend arrives!  My husband and I are packed up and ready to go away for the weekend and my sister is coming after work to stay with Mom.  Then a wrench is thrown in the works!  Unexpected snow and ice draws out a 30 minute, 20 mile drive to three hours and my poor sister finally walks in two hours after our planned departure.
That may sound like our weekend got off to a bad start but actually, although we were delayed and traveled through snow and ice ourselves, my sister traveled 20 miles in three hours and we then traveled 283 miles in 6 hours.  I think our trip, while dicey at times, was far easier than what my sister dealt with at rush hour getting to our house!
We got in late – 3 am – but we were able to sleep in this morning and have had a wonderful day.  Tonight we will go to bed and tomorrow we will again sleep in until we are ready to get up.  A perfect weekend!
Meanwhile, Mom has realized that the boss is gone!  Mom has been known to say, “She’s in charge.”  I learned quickly that I couldn’t let her do some of the things she thought she could still do.  To her, washing dishes was accomplished by rubbing her fingers over them in running water – no detergent involved, nor clean hands for that matter.  Given that, I weaned her off those tasks and left her with those that she could do.  It took her a short while to get used to it but now she knows that I am the homemaker and the caretaker.
Steve and I have done our best to handle Mom’s changing sleep/wake schedule.  The gate has been working – Mom took it down not too long ago and Steve added a cross wrapped Velcro strip to make it difficult to open.  We now lock my office door so that she doesn’t have access to things in there and I moved her recliner into her room so that she can sit comfortably in the morning if she gets up before us.  It has been working.
But alas!  The “boss” (me) is gone!  My poor sister!  She woke up this morning to find that Mom had taken the gate down and turned on all the lights, including my bedroom light – and this was all before 6 am this morning. 
I see it often.  If someone stops in, Mom will whisper to me, asking if they will be staying to eat.  When I leave Mom at home with someone, she tests her wings to see if she can get away with ruling the roost in my absence.
So, tonight my sister probably won’t sleep much because she knows Mom can take the gate down.  Steve already has a plan in place though.  By midweek, he will replace the gate with a half door that will have a keyed deadbolt.  Another suggestion from my friends at the forum!

Wednesday, January 5, 2011

Sometime’s I’m Surprised…

Having watched as Daddy progressed through Alzheimer’s years ago, there are many behaviors that I expected when I started this journey.  I’ve touched on many of them in my blog – the delusions, the tantrums, the loss of words, etc.  In many cases, I also know what causes them – generally me.
Yesterday, for example, I rocked Mom’s world.  I knew I was going to do it but it had to be done. 
One of the disturbing behaviors my brother had to deal with prior to Mom moving out was Mom “cleaning up”.  That may sound like a good thing but my brother has a consulting business with many clients and he would come home to find his client paperwork gone!  Mom had “cleaned” and put it all away somewhere.  She never actually threw it away because she is, after all, a hoarder to some extent.  The headache was trying to find out where she put it!
Given Mom’s recent sleeping pattern change, I thought it best to begin locking my office door at night.  I didn’t want her to have access at night to scissors, other potentially harmful things or my papers.  To make that change, though, I needed to move her recliner from my office into her room so that if she wakes early in the morning, she can sit in her chair if she doesn’t want to get back in bed.
So, yesterday I cleaned Mom’s room from top to bottom and while doing that, moved a few things out and moved the chair in.  That is a major change!  You see, for a person with dementia, a change in position of anything, big or small, can be upsetting.  It didn’t help that Mom was and still is experiencing a lot of confusion.  Given the major change, while she obviously isn’t happy about it she hasn’t complained too much – yet.
One behavior that I have learned about since caring for Mom is paper eating.  Evidently it is not unusual for someone with dementia to eat paper and we have experienced it a few times at dinner both at home and at restaurants (napkins).  We quickly learned to pay attention and head it off. 
Tonight, Mom surprised me!  We finished a meal at a restaurant that she declared delicious and shortly after, I took Mom to the restroom.  Moments later it was obvious that she had a mouthful of paper!  
When I asked her about it, she said it was bread – but she hadn’t had bread with her meal.  She was not happy with me for asking, telling me that she was “doing things right, not like other people!”  I quietly told her that I was sorry but that she does do some things that she shouldn’t due to the dementia. 
I didn’t argue with her about getting rid of the paper – I guess I could call it a vegetable?

Monday, January 3, 2011

Lost Puppy

Today was a good day.  Mom got up at 6:30 and I welcomed her to the day.  After getting our day started, getting some laundry going and having a snack, we headed out in the car to do some errands.  Going somewhere is Mom’s absolute favorite thing at this point. 
So, we dropped some things off to my daughter, dropped something in the mailbox at the post office, and then to a store for a return.  Our next stop was a follow-up to some arrangements I have made to prepare for Mom’s passing.
A few months ago when Mom came down with pneumonia, I realized that I need to get my ducks in a row in case Mom would take a sudden turn for the worse.  The first thing I did was to contact a local funeral home to set up a file for Mom.  Like Daddy and others in our family, including me, Mom has donated her body to UC Medical upon her death.  Although we don’t do the normal funeral thing, we do need a funeral home involved to provide the transportation to UC and they also facilitate the death certificate and the death notices.  That may seem very straightforward but it’s not.  Mom was adopted and, not only was she adopted but her name was changed at the time of the adoption.  When requesting death certificates, if all pieces of data are not perfect, it can throw a wrench in the works.  So, to avoid issues, today we dropped off a copy of Mom’s birth certificate and a copy of her adoption papers.  Needless to say, they were thrilled to have them!
I truly believe that God puts me in situations that allow me to do what needs to be done.  At the same time that I was contacting the funeral home, my son-in-law invited us to an open house at his place of work.  Part of the open house was a fair of service providers that might be helpful for the associates attending.  As I was walking Mom through, I found a hospice booth.  My husband walked on with Mom while I had a wonderful conversation with the hospice folks and consequently was able to get Mom on file with them.  If anything happens now, I need to just call them and they will jump in to help me care for Mom, whether it be getting her through a critical illness or end of life.
I have these things in place for my peace of mind but as I was saying, Mom and I were running around this morning.  After the funeral home, we had a great lunch out and went to the grocery store before heading home.
All went well until just before dinner when suddenly Mom was like a lost puppy!  She was wandering around unsure of where she was and unsure of what to do.  When called to dinner, she asked, “Where do I sit?”  After dinner, she again was looking around and asked my husband if we (collectively) live here.
That quick, that lost.  That’s dementia!

Sunday, January 2, 2011

Just Agree!

On a daily basis, it’s easy to realize Mom’s loss of connection to reality.  When dealing with someone with dementia, it is important to understand this symptom and learn to avoid tantrums by agreeing or being non-committal.  The last thing you want to do is bring them back to reality or the present.
Quite often, Mom’s comments just bring a smile to my face.  This past summer, she would talk about the flowers that she planted for the man next door and their agreement that he would take care of them.  When the outdoor Christmas decorations began popping up, it was funny to listen to her explain that she had given everyone those decorations and that she was enjoying watching how they used them.  She’s even commented several times about how she “owns” all the land and homes around ours and she lets our neighbors use them.
We’ve had great chuckles out of Mom’s comments to people when she decides that she “knew” them when she was young.  She told our server at Max & Erma’s once that they had gone to school together.  Our server, an absolutely wonderful woman, responded positively to Mom and then quietly told us, “I better check my birth certificate!” 
Then there are the times when she talks about when she was a teacher or that she drove a car all of her life – neither of which she did.  Daddy was a teacher for 35 years while Mom was a wonderful stay at home mom.  Daddy did all the driving because Mom never had a driver’s license.  She tried driving a tractor once and although she didn’t hit the tree, she got so close that they couldn’t manually crank it to get it started – that’s the way cars were when she was young!  After that incident, she decided to never try again.
Just today, Mom was at my oldest daughter’s home.  The neighbor had some of those blow up Christmas decorations but at the moment they were deflated and lying on the ground.  Mom was concerned about the “children lying on the cold ground”.
Sometimes, whether it be my mood or the situation or the topic, I struggle to remember how I should respond.  I feel compelled to speak the truth about the situation.  I’ve had to do it a few times for safety purposes but sometimes it seems I just can’t keep my mouth shut!  Usually when Mom talks about “the man on the phone” I just give her an “uh huh” or “hmmm” response.  A few times when that response didn’t appease her and she kept coming after me about, for example, the snow on the top of the trailer, I have told her that we have no phone and that no one has spoken to her on the phone.
The good news?  When I screw up and cause Mom to get agitated, I learn my lesson again!