I really haven't had any new insight about Alzheimer's or dementia... whatever ugly thing is rearing its' ugly head with Betty. I keep thinking I get ahead of my impatience or my surprise with something she says or does, but no, one day is another and I am still at point B.
Yesterday I brought our dinner over to her house to prepare as we have been every Friday. I arrived to find two little half pints of ice cream in the fridge not the freezer. We mentioned that those things need to be kept in the freezer as they are ice cream and Betty is quick as lightening to say that she was just trying to choose which one to eat. Every thing is still quick as lightening when excuses are being made. A part of me wishes that we were beyond that point but then that would probably mean that Betty's disease has progressed and I don't want that for her.
We have had a hell of a time with her being sick with a cold since March 1st. (and giving it to me) as she rather denies that she is ill. A cold is not "sick," supper is not dinner, I eat a handful of cereal so I can loll in bed until noon. When I told her she had stayed in bed until 5:15 p.m. one day she denied that she had done that. There is of course no sense in trying to get her to listen to your reality because it is NOT going to happen. When weeks went by and she is still saying she can't come over or she is staying in bed, I try to get her to the doctor. Not happening! She claims I am making it up, that she is not ill. So, I am tired as always and bogged down with my own coughing fits.
Back pain just increases with coughing and being exhausted does not help to do mindful pain erasing. All in all I feel blah.
Thank God for Puff's Plus!!!
Ten Tips for Communicating with an Alzheimer’s Patient
This morning I tried to upload a new post and it got lost and never saved. Believe it or not the title was; When Will I Learn To Zip My Lips?
It was about my communications with Betty and how before I know it I find myself mid-argument. I never really know how I get there but BAM! there I am. I need to pay closer attention and the Ten Tips above will certainly help. I dare say number 10 is..Do Not Argue..haaaaaaaa!!!
God bless the Alzheimer's Reading Room... AMEN!!!
Due to some change of plans we are picking Betty up late this afternoon rather than tomorrow afternoon. The so-called rest time is cut short and I already feel a bit miffed. This is not rational miffidness...LOL! It is silly and self-centered and selfish. Too bad! I feel it. I am miffed. LOL
Ok..got that off my chest. I went to the store to get the food that I need for the long week-end. Why I make a big deal about having Betty food is byond me. She doesn't remember that we had hot dogs and beans two weeks ago. Those were the old days. Now she has no memory of last week..ALL IS NEW.
So, unlike Price is Right I can offer Betty, Door number one, with hot dogs and Beans or Door number two, with Beans and Hot Dogs, or Door number Three with...Hot Dogs and Beans and she will be perfectly happy with it. She really has been easier to feed since this memory issue got worse. In the past she spent time at every meal explaining, same story over again, that she cooked this and that and worked and good meal on the table and.... Now it is not so much pressure. A good thing.
Trust me I still give her choices...especially for lunch because she still makes sure, through the "Dick asks me what I want," story, that she has choice. Still managing. So am I. We work it all out.
I like that there are clear days between the muddle fuddle. It feels less worrisome and it feels lighter.
So, why should I not Labor on Labor Day week-end? On with the show! What did I say was behind door number one?
Well, I am here to tell you, "Thank You" can be overdone. I counted the newest REPEAT phrase, "Thank You," TWENTY-SIX times...for breakfast. Am I complaining? I guess in a way I am..but not totally. What I am thinking is, it doesn't matter what words are repeated, it is the constant over and over and over words that drive caregivers to distraction.
It all started last week-end but I just barely noticed. Yesterday my head almost exploded by the time I served dessert. Over and over the phrase goes, "Thank you." Twenty-six for breakfast, twenty for a cup of yogurt, twenty or more for dinner...then comes dessert. You would think I could be glad for Betty's polite nature. Instead I am overwhelmed with the words. I feel like each time she says it if I say, "Your Welcome" in a different tone or in a different way...maybe it will stop.
It goes on. "Thank You" has taken the place of some of the repeated stories so I guess my advice is; Be Careful What You Wish For! I am just a bit sad as I write this. There is something so sad about the way she is thanking me. It seems fearful in a way. Possibly she is afraid if she doesn't "behave," be the GOOD girl, be polite, we might not want her here. She has said more than once, in a child-like voice, "I'll be good."
Constant reassurance that she will not be tossed away... help me to be charitable and help me to seek ways to calm her fearfulness. And, God, help me to be patient with the repeating.
Please.
Yesterday before breakfast Betty was helping to set the table. We all drink our coffee black, no cream no sugar. Probably at one point all of us added something, cream or sugar, but not for many years. Betty asked for the sugar bowl and a spoon and Bob said, "You don't use sugar, Mom." He said it in a rather matter of fact way... more or less in passing. She said, "Of course I do!"
For me it was nothing unusual. I call episodes like this, ALL IS NEW. Bob still has difficulty understanding that his mother truly forgets these things. He still wonders if it is attention getting behavior because of the
narcissism we are convinced she has lived with most of her life. I don't think it is...I think all things can be new for her at any given moment.
We can go to a restaurant that we visit once a week and she will act as though she has never had a particular menu item before or has not had it in YEARS! She can watch TV and shows she has seen are new to her every week. Only those things that happened YEARS ago are left in her memory.
Sure, some days she is as sharp as a tack. But, most days she needs to ask over and over what day it is.
Yesterday was not a good day for Betty.
She came downstairs and sat with me at the table. I was busy on the computer and so at first didn't notice that she was upset. Finally she got my attention and started asking questions about the wedding she is going to attend with her niece tomorrow. She just couldn't get the days straight and could not find her notes where she had written down the info. She suddenly realized that she doesn't take sugar in her coffee and she was upset with herself for being forgetful and not using the calendar I had provided for her to keep track.
She started to cry and call herself stupid and as I tried to explain that people forget and that she was doing OK she started to say she had only noticed that her memory was gone since she came north for the summer. I agreed with her that at her house she had a system that was working for her and that things were certainly more confusing for her here. We talked about 20 minutes; she cried, she laughed, she got her calendar and wrote down the info she needed. It is sad to see that she is starting to realize how profound her memory loss is. Sometimes I think it would be best if she didn't know at all.
For as long as I can remember Betty has repeated stories, verbatim. I had mentioned this 10 years ago after meeting her. No one thought it strange which makes me wonder how long this has gone on. I wonder how much the writing down details of her day, times, people she spoke to, what they said... how much of that was a sign of things to come? It was not journaling in a normal way, by the time I met her...it was different.
ALL IS NEW. In some ways I suppose that can be exciting. In other ways it must be terribly frightening. I guess our goal needs to be to make her feel safe and secure. I hope we continue to learn from Bob DeMarco and others who are on, or have been on, this journey
Do visit; Alzheimer's Reading Room
Just wanted to make note of the pill story. Last night Betty said that she needed to do the pill container after Sunday. So I said, "Well, you don't have any for Sunday in there." She said that she has Sunday in the container, that I had written a note and she had filled Sunday. I said that the note had said they should go into Saturday. She got a bit huffy and said, "No, you said, Sunday." What I had actually written was, these pills should go into Saturday after Sunday is empty. The reason being, she went on a Saturday and came home on a Saturday so it would have been too confusing to put Saturday in there and have the daily Saturday filled as well.
I decided not to argue the issue and although I figured she must have missed an entire day of pills, I decided that without Aricept in her repertoire... there was less reason to be concerned.
Today she came down with her empty pill container and announced she needed her pills for the rest of the week. So, Sunday was indeed empty and there was little to worry about.
When it comes to having information exactly straight it will serve me better to just check the situation out before I get my panties in a jumble.
I do feel there is slightly less CONFUSION without that Aricept.
I am so glad that Betty's ferry trip home went well. No snags at all. So, as I said, I needed to let go and stop being so anxious because all was fine. Pat called just as Bob was grabbing Betty's luggage from one of the crew. She was checking to make sure all was well and it was!
It was interesting when Betty got back here she asked if everything was ok? I said there was no problem and asked what she meant? Then she went upstairs and came back down and said, in a very firm voice, "I'm sorry but I think something is wrong. Since I got back I notice something is wrong. Did Pat say anything to you? I didn't do anything wrong." I just said that I was not sure why she was feeling that way but that nothing was wrong. Tried to reassure her and then Bob came down and said, "Mom, I didn't give you an official welcome home." That seemed to cheer her up and she let the "feelings" go that something was wrong. I think she was feeling that Pat had said something to us about her week and she couldn't seem to accept that Pat and I had not really talked.
We have already played a game of cards and until eight cards Betty does really well. Starting at eight cards she counts over and over but even with it taking a bit long she can still play and sometimes...like today...she WINS!
We will get settled in and start a new week. I am feeling good about the lesson of; Letting Go.
This week Betty is visiting Bob's sister so we have some time off. It really sounds awful when I read what I write and hear myself whining about being tired. When we dropped her off we came home and slept, him on the couch and me on the floor. The exhaustion is palpable and we are on our third "free" day still yawning and tired.
So far we have gone out to eat breakfast yesterday and today had a wonderful lunch at one of our favorite Thai restaurants. It was heavenly! I truly appreciated time with my husband not having to worry about anything except deciding upon lunch.
It seems to me that the need to rest is one of the most important aspects of dealing with/caring for someone with memory issues. You always need to be on the ball and ready to enter into their world rather than trying to drag them back to yours because as I read on; http://alzheimersreadingroom.com "you might as well bang your head on the wall" to try to do anything else.
We have been talking about what we need to do for the future. What kind of people can't be the caregivers full-time? Are we awful? How can we deal with it in a loving way? I listen to Bob's cousin talk about BOTH of her parents having health problems and she has them at their home and does so much after working a long day and on week-ends. She is wearing herself out and I am not sure her mother can survive the stress of having Parkinson's and being part of the care team who watches over her husband who has Alzheimer's. I wonder if it would not have been better for them both if they had somehow moved them long ago into some sort of senior housing rather than keeping them in their house. (Not that ANY of that is my business!)
I wonder what will be best for Betty? If she is in her own home she will still be worrying about the care of the home; lawn, pest control...the list goes on. If there were no worries she might even manufacture them! Housing is so darn costly. I am spending my rest time worrying aren't I? LOL! Enough of that! But, do you see how easy it is for me to get wrapped up in all of that mess? Whoa!
I am addicted to books and they are piled in my living room against the wall, stacked in bookcases on all four floors. I have a pile of Diet books that would put any library to shame. Eat More, Weigh Less, The Best Life Diet, Ab's Diet, The Dieter's Prayer Book...you name it and I have it. Clearly hope lies deep within.
Now I am on a new path..Alzheimer's World. What a world! Yesterday I opened my latest shipment from Amazon.com; I Can Remember: A Daily Journal for People With Memory Problems
This is a great possibility if I can get Betty to use it!
The layout is similar to a workbook. There are two pages for each day beginning with; Today is... (day of week) (month) (date) (year)
What's the weather today? (Circle one) Followed by pictures of a sun, partly cloudy, cloudy, rain and snow
What did I do this morning? Then you give yes or no answers to a few questions such as; Go to bathroom, brush teeth, wash face, shower, get dressed, read the paper, take my pills
What did I have for breakfast?
What are my plans for today?
What did I have for lunch?
Whom did I see or talk to today?
What did I do this afternoon?
What did I eat for dinner?
Anything special on television?
Did I take my evening pills?
How do I feel today?
It would be wonderful if Betty would use this but she balks at every suggestion. Right now she seems to be in excuse mode even when they make no sense. There is a lot to stay on top of and a lot to try to dance around to try to help someone who denies they need help.
I need to walk the fine line of helping with important things like pills and letting her do as much as she can because...use it or lose it!
