Tuesday, April 26, 2011

And Now She’s Picking…

The searching continues here and there.  I rocked her world today by moving furniture and that set off a need in her to take all my things and pack them because in her words, “They belong to me.”  I let her take the first two things – a picture of us kids with Mom and a picture of her with Daddy – because they were hers.  As she moved to other things I stopped her (multiple times) and asked her to leave things alone.  I received the “belongs to me” argument and usually I don’t argue but in this case, I stopped her and let her know that the things were mine.  As you can imagine, she was not a happy camper. 
It all started with a small folding table that my husband bought for her when she moved in.  We thought she would enjoy sitting at it to play solitaire and at the same time look out the window.  She did for awhile so it did serve its purpose but for the last six months it has just taken up space and served as a place for the above mentioned pictures to sit.  Most recently Geoffrey, the Toys R Us giraffe, joined the pictures on the table so that he could enjoy the view out the window – at Mom’s insistence.
There were other places the pictures could sit and Geoffrey too so I took the table down to the garage.  At the same time, I moved the table we use to put puzzles together over to that spot so we can see out the window while we work on the puzzles.  I even put Geoffrey there so that he could still enjoy the view.  J
Mom saw the change and the search was on!  I knew I was causing some trauma with the change but I know that she will eventually get used to it.  I just have to live with the grief for a bit until the dementia helps her forget the way it was and her OCD accepts the new lay of the land as if that’s the way it always was.
In addition to the searching, Mom – a lifelong picker – has been picking.  What’s picking?  She picks at her nails until one has to be cut and filed.  She picks at her cuticles until the skin on her fingers is all peeling and red, sometime bloody.  She has picked on a spot on her face in the recent past but isn’t right at the moment.  She is a picker.  I have known that habit since I was old enough to recognize it. 
So, it was a problem before the dementia when she knew she was doing it.  What do I do now that she has dementia and doesn’t realize she’s doing it?  She shows me a finger with a nail or skin that needs to be taken care of; I fix it and remind her that she shouldn’t pick it.  She responds, “Oh, I didn’t do that.”

Thursday, April 21, 2011

She's Searching...

For what, I don’t know – and neither does she.  She has done it at times, searching through anything she can open but this past weekend while I was away the need to do it seems to have become more intense.
I ask her what she’s looking for – I have to repeat the question because she doesn’t understand my words.  The response varies.  Sometimes she points to her head and says she doesn’t know, that her “brain won’t let her”.  This afternoon she told me that “they bring things at different times” and last night she said, “Oh, I gave that to Dad.”
The searching is not unusual.  Those with dementia will often start searching when they are actually trying to find something in their mind or when they are trying to wrap their mind around something and they no longer have the ability.  When we moved her down here – soon to be one year ago – she searched and searched.  I’m sure she was “looking” for her previous life and habits and my brother.  Over time she stopped searching and settled into her new life and routine.
It still comes back at times.  The day that her new doctor made the first home visit [anyone wondering look up Visiting Physicians Association on the internet to see if they are in your area and the requirements] set off a little search when he was asking her questions conversationally to assess her stage in dementia.  She looked in the baskets in the living room, looked at the pictures on the shelves and brought back a framed picture of my husband’s family telling the doctor that it was her family.  J  Then she went back to her room and brought back her family album with pictures of her daddy, mom, aunts and uncles, etc.  She couldn’t identify a picture of her own children or an older picture of Daddy but she did come back with a picture of him when he was in his 20s.
Interpreting skills are key when trying to figure out why she is searching.  To interpret you have to “live in their world” rather than trying to make them live in yours – something that is important for a caregiver to do at all times.  I do that but we’re getting to a point where it’s hard to tell what her world is.  She can’t communicate – she has some words and can even string together a sentence at times but neither the words nor the sentences are meaningful.  So I watch for clues or rack my brain for similar situations.
While I was away for the weekend, I’m sure she was searching for me – no offense to my sister because Mom was just looking for her “norm”.  When I returned, the searching came up again.  Why?  I finally figured out that the toilet paper holder that holds extra rolls in the bathroom was empty.  I filled it and the searching stopped – for awhile…  J

Thursday, April 14, 2011

I (Me) Need to Get Outta Here!

My husband says he can tell when it’s time for a break.  I lose patience with things that normally don’t bother me.  He’s right.  I’m generally pretty philosophical about the whole experience with Mom but as the weeks pass in between our weekends away, I gradually get a little less accepting.  It doesn’t help that the week leading up to this weekend away also happens to lead up to a full moon.  Add to that my husband being busy in the evenings and gone during the weekend before and it’s a formula for a meltdown.  Luckily, as I write this, we are driving down the road ready to enjoy a four day camping trip.
Normally my husband is able to stop working in the evening by 8:00 and sits down to watch TV with Mom and me.  Last week he spent three nights working right up to bedtime thatching our yard, planting new grass seed and setting up sprinklers.  Mom, of course, didn’t settle down because she had to go to each window and give me a blow by blow.
My husband is always busy on weekends too, but around the house so he’s in an out and eats meals with us.  This past weekend he spent two full days at my youngest daughter’s house, helping her and our son-in-law build a garage.  That meant Mom and I, alone for two whole days and Saturday evening!
Saturday was pretty calm until afternoon when she kept asking about my husband and whether he would be home to eat with us but Sunday brought some fun!  It was a warm day and even though we had just put clean clothes on, Mom came out in a totally different outfit.  That would have been fine but she proceeded to complain about being cold – she had taken off the long sleeve shirt and couldn’t understand why her arms were cold.  My husband made it home for dinner and soon after, we were joined by our granddaughter who would be with us until Wednesday afternoon.  We rocked Mom’s world!
On Monday as it poured down rain, I listened as Mom explained to me that “they are cleaning up there and it’s a good thing”.  I guess that’s what made her decide to move things around in her drawers and closet.  Meanwhile my granddaughter and I worked on beaded bracelets for her upcoming birthday party.
On Tuesday, we took a ride to the daycare where my daughter works so that my granddaughter could run in and pick up something we needed to make her party invitations.  When she returned to the car and we began to drive away, Mom asked if we forgot the little boy.  Seeing the building, she remembered that we always pick up my grandson there.  That might not seem unusual but later that day my granddaughter took a bike ride and when she returned, Mom looked at me and said, “Who is that???”  It’s amazing how the mind works.
Wednesday brought lots of harrumphing and complaining about being cold.  I finally took her into the bathroom and changed her back into a long-sleeved shirt to eliminate that aggravation.  That evening brought a fight again about wearing her Depends during the night but I maintained my calm and told her there would be no argument and the doctor said…  Sullen teenager appeared!
Even though I saw smart alecky teenager and sullen teenager this week, none of it was that horrible – but like my husband says, he can tell when I need a break.

Tuesday, April 5, 2011

Family Celebrations Are Over… For Mom

On Sunday we had a birthday party to celebrate Mom’s 95th – which she officially turned today.  It was bittersweet because the doctor has suggested we curtail her involvement in these family gatherings now because they are too hard on her.  I remember the trauma Daddy suffered the last couple of holidays before he moved into the nursing home.  It was so sad that he could no longer enjoy his family.
In this stage of her dementia, I find it is better to wait to tell her what is happening so no mention was made until an hour before.  I mentioned it then because I wanted to wash her hair so it would be fresh for her party.  She was happy to hear that her family was coming to celebrate, less happy that she had to have her hair washed, and expressed disgust when I told her she was turning 95 on Tuesday.  I’m not sure if she was upset about the 95 (she often says she is 102 or 104) or the Tuesday.  J  She went along with me though and I washed her hair without incident. 
Whenever I have to tell her something that will rock her world, I know that she will be in the bathroom multiple times and she was in there 5 or 6 times in the following 45 minutes and then multiple times during the party.  The thought, or possibly the inability to actually get her mind around the thought, sends her intestines into an uproar.
As the family arrived, Mom smiled and told them she couldn’t remember them, pointing to her brain.  It’s a busy time of year but almost half of her 70+ descendents attended and everywhere she turned, she found family.  She soaked up the hugs and kisses!
As time passed, I watched as she moved around the house, obviously disturbed by things being out of place and so many people around that she couldn’t remember.  She sat down and ate her meal amidst the commotion and handled it well but after eating, she went out and sat down by my brother.  I’m pretty sure she needed to feel safe and he provided that comfort whether he realized it or not.
Only term missing was "Big Meemaw" as Hurricane calls her.  :)
After dinner and birthday cake, Mom started her typical harrumphing at me.  It’s a pointed stare with a clearing of her throat that indicates she is ready to move on, or in this case, get everybody out and things back to normal.  I ignored it, pretending I didn’t notice and eventually everyone headed home and we were able to get the house back to normal. 
“Normal” is key to taking care of someone with Alzheimer’s/dementia.  They like routine and they do not handle clutter well, nor do they like things out of place.  Having a house full of people and the kitchen a mess was definitely NOT “normal”. 
With the house back to normal, Mom was finally able to settle into regular routine.  As I hugged her goodnight at 9:00 pm, I assured her it would be just “us two tomorrow”.  Her response was an emphatic, “Good!”

Friday, April 1, 2011

A Day in the Life…

Some people probably wonder what it’s like to be a caregiver for someone with dementia.  It’s certainly not a vocation for everyone especially as the loved one declines and more care is needed.  Initially the caregiver needs to handle the mental side of the situation but over time, more and more physical care becomes necessary.  At this point, I seem to be one of those people that can handle it – as long as I get some respite on a regular basis!
My day begins at 5:42 am when the alarm goes off for the first time – yes, I admit it, I hit the snooze twice before actually getting up at 6:00 am.  My husband quietly heads downstairs to take his shower and I stay in our room to do my exercises, hoping that Mom will stay asleep until at least 6:30 am.  By 6:30 I open the hallway gate and head out to the kitchen to prepare breakfast for the three of us.  Mom usually gets up by that time and begins getting dressed and ready for breakfast.  At the same time, my husband has finished his shower and we all sit down to eat breakfast together.
By 7:00 am or so, after finishing my breakfast, it’s my turn to shower.  My husband gets things ready for his workday while keeping an eye on Mom as she finishes her breakfast, makes her bed and decides which chair she would like to sit in for awhile.  J
The morning, in Mom’s case, is devoted to snoozing.  I squeeze in the changing of the Depends and taking care of her feet, or a bath if it is Thursday, and I throw in a snack midmorning.  She loves her banana!  Meanwhile, while Mom is snoozing, I alternate between cleaning, working on the computer, doing laundry, etc., depending on what needs to be done that day.  Since Mom is not able to carry on a conversation I generally have the TV on while I work and she sometimes sits and watches.  If she does decide to talk, I always have that pause button!
Lunch is at noon and the afternoon is spent working jigsaw puzzles.  At this point in time, it seems to be the only thing that Mom likes to do on a regular basis.
By 4:00 pm, the countdown begins!  She will check the clock and begin asking about dinner and when the time comes to make it, she stands there and watches.  At 6:00 pm we sit down, say a prayer and eat our meal.  Although she doesn’t say it with us, each night Mom thanks us for saying the prayer.
After cleaning up from dinner, Mom and I sit down and watch TV and she begins the countdown to her 8:00 pm bowl of frozen yogurt.  At 9:00 pm, she’s off to bed and we head that way too, shortly after 10:00.
I’m sure it sounds like an easy day and for me, it is.  I can listen to the same comments over and over and provide the same answers over and over.  I keep an eye out as she wanders around the house just to be sure she is safe (like when she just decided to touch a pan on the stove to see if it’s hot).  It’s easy but by the time I go to bed, I am truly tired.