Once a week is not enough reality to realize the reality of living with Alzheimer's. I mean, I saw mom for short bursts at her retirement community 3 days each week, talked to her every day, but we only really spent the entire day together on Sundays. She came to our home every Sunday at 1:00pm and stayed until 7:00pm - because routine was (and is) all important.
We noticed her short-term memory loss and answered the same questions over and over. We even noticed a pattern in the questions she asked. There were mostly comments when I picked her up - the way she insisted that I look at her junk mail no matter what else I was doing. I could be in the middle of changing her bed and she got it in her head that the junk mail HAD to be a priority. BUT I couldn't ask about the mail until she brought it up. I thought I could avoid the interruption by going through it as soon as I got there - but that was wrong! So on good days, I made a bet with myself how long until she brought up the mail - would it be when I was changing her bed or when I was filling her pill box or gathering up her laundry? Would it be when I was gathering up her trash or restocking her cabinets? On bad days, I challenged myself to stand firm no matter what I was doing and remind her that I was in the middle of something and not jump to deal with the mail until I was good and ready. The problem with that was - she can't remember that I am in the middle of something or that I even mentioned that I was in the middle of something and so she continued to hold out the small stack of insurance and hearing aid and political bits of mail for me to go through. The game was a much better idea for both of us!!! Mom really looked forward to getting mail - it was a big deal for all the residents, but when she started hiding things and we almost missed a really big thing, I had to have most of her mail sent to me. I guess that's why the bits she got were so important. I think they made her feel like she was still in charge. I can go days without getting the mail...I don't need a stack of paper to remind me how much I am responsible for and nobody writes letters anymore.
Sundays also brought a QOD (Question of the Day) - that one was asked repeatedly during her first couple of hours at our house - the frequency depended on how many people were around. There were the TV questions - mostly asking "who is that man/woman?" when a familiar actor or athlete came on TV. The dinner questions - "Now, do I have anything I need to worry about this week?", "I just love your big backyard...how did you find this place?", "Is there anything I am supposed to do or didn't do?". As dinner was ending we always got "I love coming to your house to be with you and the kids...the worst part is that I have to go home." and "Is it almost time for me to go home?". The saddest questions of all were the drive back questions, "Now, I live up on the 3rd floor, right?", another round of "Is there anything I need to worry about this week?" and although not really a question, "I don't know how you came to bring me to this place, but I am sure glad you found it...I am awfully contented." I could measure her level of insecurity (and how far I needed to walk in with her - just to the lobby or all the way up to her room) by how many times she asked and which of the questions/statements she focused in on.
Now that she lives with us the reality of the questions is the reality of our days. What will cause her the most distress frames the QOD...what day is it? Do I need to go upstairs to my room? where am I? have we had dinner yet? are you my momma? was I married? why did I come to live here? is Lisa coming to get me today? where is everyone today? are you going to leave me?
Many of the questions are posed in an almost angry, negative way. I guess because she's my mom, I just roll with it, but the family finds it pretty upsetting. We don't know exactly how to deal with it - is it too unkind to make a joke of it to get through (never so she can hear, but just as a coping mechanism)? Is there any reason to talk to her about a better way to phrase things...that's what you say to a child, not to a grown woman. I feel sure she senses every eye roll and they are almost involuntary about 3:00pm when she is getting antsy and after dinner when she is going to the not-so-fun evening place. Can I just not answer if I've reached my limit - she won't remember. I spend 30 minutes to an hour each day looking up info on Alzheimer's to be better prepared to handle this new reality...I've picked up a few helpful ideas, but it sounds like each person is unique. I love unique - I just need to remember that and be thankful for whatever the day brings...because I am 100% sure there is a reason I am in the middle of this new reality.
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