I could do this because mom didn’t know about it. We keep her facebook account and email, but she doesn’t use them anymore. If there’s something fun or interesting, I share thatt with her. She still doesn’t know, but I will no longer be able to share about it.
Today is hard. She’s reading the book Alzheimer’s Action Plan. Since you can’t officially diagnose Alzheimer’s until an autopsy, she doesn’t understand why she has the diagnosis. I haven’t read that book, but the other materials I have read state that information followed by stating that the current testing for dementia in the living is quite accurate. She has had blood work, MRI, and many verbal and written tests. The results are clear. And if it isn’t Alzheimer’s, it’s very much a progressive form of dementia.
But do you tell her she has it so she’ll keep taking the medicine and getting help, or do you pretend that she doesn’t even though she’ll stop doing the things that help her? She doesn’t forget everything consistently. It’s like her brain is playing some random version of wack-a-mole with what she does and does not remember. It’s so random. Most of the time, she is cognizant, at least of the present. It’s not yet to the sun downing in the evening. Instead, the memory comes and goes willynilly any time of day or night. And it no longer matters if she eats well, gets enough sleep, or drinks enough water … the memory is going, and the ability to be independent as well.
I went with the truth, which meant printing her medical records again and explaining what the doctors and I and others see. It’s been a long day.
And now that she knows (she thinks for the very first time; it’s more like the 20th time), she asked that I do not talk with others about it. I think she thinks that when I shared what others have noticed, she thought I was speaking of since her diagnosis. What I was sharing are the things people noticed before diagnosis which led to seeing the neurologist. When people see things that worry them about her, they have come to me. They have done the same when I gave others cause about myself, they came to her. The things that have been noticed about mom were shared because they love her. That love has led to worry with the inconsistencies they’ve witnessed.
I am trying to honor her wishes in all things, so this is my final episode for now. Yet this impacts my life immeasurably, so I will share again. I live with her, so I have no genuine or regular escape. I don’t get to go home to my supportive husband and have time away on a regular basis. And work is not an escape, it’s work.
I will keep up all of the dementia support groups, seeing my therapist, and the like. I have learned that far too many of my friends have been through or are going through the same thing with their parents or spouses. That is why I wanted to share this: To know we are not alone and to learn from each other. I thank everyone who has been sharing with me your experiences.
With my migraines, I have found the greatest help from being full and open about them in every way possible. I wouldn’t have them controlled as well as they are today without having shared with others my pain, and I hope my experiences have helped others.
It is a heartbreaking and exhausting disease in so many ways. I have the added complication of trying to deal with my migraines, and friends have their own medical issues to manage while taking on a new disease with a loved one. Many also have children – the sandwich generation.
Moral of the story: While caring for those in need, keep up self care. You cannot care for others unless you are well cared for.