The 36-Hour Day

My new drummer friend, who lost his wife to Alzheimer Disease not too long ago, loaned me (or probably gave me.. ) his copy of The 36-Hour Day by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.

I am half way through the relevant parts of this care-givers bible, and here are a few key things I am gathering from my reading and personal experience.

Daily routine. I think Dad is doing a wonderful job with this, especially with the meals and snacks and medications. And even though Mom is only getting bathed once a week, at least it is falling into a set time once a week.

Reassurance. This is were I think I'm doing well, at least on the days when I'm not fried. Patience is the key here.. with the repeated questions of "what time is it?" and her restlessness, getting up and down.. If she decides suddenly, just after getting settled back down into her chair with her throw over her legs, that she now wants to get up and look one more time at the dinner Dad brought home from the market, even though she was already shown or told only ten minutes earlier, just go with it. These behaviors are a test to your patience, and that's why I am learning first hand how vital it is to be well rested and calm around Mom.

Flexibility. You just can't expect Mom to stick with one topic of conversation for too long. If she asks about something, keep your answers short. Too many long sentences, with too much back story, is too difficult for her injured brain to follow. Positive, concise answers are best, and let her flow into whatever subject she wants to go to. If she starts to get dark or sad or negative, gently guide her out of that by changing the subject to something positive.

We lost the power here on our road late Sunday night and didn't get it back until Monday afternoon. These are the kinds of things that terrify Mom, but I think she handled it all pretty well. Dad stopped by in the car Monday morning, and he had Mom with him. I decided at the last minute to jump in with them and take the trip downtown, just so that Mom wouldn't have to be in the car alone for too long while he ran his errands. I'm glad I did.

One of the strange things happening is sometimes Mom has trouble controlling the volume of her speaking voice. For the last year, we've all noticed how her speaking voice has changed to a very soft and feeble tone. Now, when she get a little upset, or seems to be struggling to find the right words, she might yell the words out. It's almost like she's fighting to get it out, and to yell makes it easier. Other times, it's simply that she is upset, mad at Dad or fighting with her frustrations. Imagine how angry you would get if you couldn't say the words you wanted to say, to convey your true feelings. It's like this for Mom, and if she has to raise the volume of her voice to "spit it out," so be it.

So, the last few days, we've noticed restlessness. Probably due to the poor weather the last few days, and perhaps she is getting bored. It's getting difficult for her to read now.. She loses track of the story and forgets where she is or what happened. The same old daytime television shows are getting boring to her, as well. Too much HGTV! At night time, she and Dad watch a few programs together that they both enjoy.

She has also commented to us about vivid dreaming lately. This is probably due to the increased dosages of the Memantine (Namenda.) Her neurologist, Dr. D., did mention this as a possible side effect to this drug.

I could be wrong, but I feel like the drug is helping. The other night she made their chicken dinner. Yesterday she dried the dishes I washed and put them all away in the right places. Yesterday afternoon, she wanted to take a walk (I didn't have to ask her), and she pushed for four laps up and down the driveway. She even remembered an old marching chant as we walked ("Left, left, I left my job..." etc.)
I thought that was a nice little win.

So, we have our good days and our bad days. It really comes down to moments now.. good moments, bad moments. It some ways, her brain's losing ability to keep track of time might be a small blessing, in that she can't really measure how much the disease is taking away from her final years of life.