75th Birthday & Peek-a-Boo Dementia

Mom’s status has been wildly unpredictable lately as far as her speech, ability to walk even a few steps with assistance, and her capacity to feed herself.  Some days she’s almost comotose, and then today she called me up (after weeks of not remembering how to use the speed dial) and wanted to discuss politics and the details of my work, more eloquent than I’ve heard her in years.  It was shocking, and not as comforting as it might sound.

It’s hard to explain, but instead of being a joy, it can be deeply disturbing to have a piece of my mother that I’ve mourned and released show up again, unpredictably, in full color.  The former Carol Jean who makes those appearances never lasts for more than a day, and then the mourning starts all over again.  It’s a big tease, being visited by this fleeting personality, more a mirage than a recovery, taunting you into wanting to believe in its permanence.

Knowing it was a risk, I decided to throw Mom a party for her 75th birthday, hoping she’d be alert for at least part of it.  As it turned out, she was quite floppy that day, barely able to hold her head up at times, pretty anxious, uninterested in talking, and I did end up needing to feed her the birthday meal and cake, but there were a few moments she was present, smiling, and enjoying the attention of the people who had gathered in her honor, which is what mattered.

The birthday cake woke her up for a few moments, and she knew what to do. (By the way, that post-it is actually far in the background and not really on her head, but it sure looks like it is!)

 

 

We partied on while Mom slept peacefully.

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This entry was posted in caregiver stress, support, and respite, dementia, family issues, inclusion and tagged . Bookmark the permalink.

5 Responses to 75th Birthday & Peek-a-Boo Dementia

  1. JudyDearing says:

    Megan, of all that goes with dementia it was unpredictability that seemed to cause my most emotional and mental distress. I identified with a child’s yo-yo. When she would have the downward spiral I was sure we were experiencing the end. Other times I questioned myself if things were really as bad as I often perceived.

  2. momsbrain says:

    My experience is probably more like Judy’s. I’ve worried about Mom going downward. I haven’t seen her really significantly improve after any declines – except maybe with her eating, in that she is using a utensil now after more than a year after I first saw her eating with her hands. She can certainly hold steady for awhile, though. I can completely see how it would be difficult to have your mom back for only a day here and there. Completely.

  3. Megan says:

    Thanks to both of you. I can totally relate to that Judy. I’ve thought it was the end a few times- as did her doctors.

    Interesting, Emily. I’ve noticed that about you in your blog, that you worry about downward a lot. It seems your mom enjoys herself enough, so I can see where you’re coming from.

    I know people don’t talk about this much, but I’m fully in support of my mom’s desire to die, so I worry even more about her staying alive much longer than she feels she has any quality of life. At this point, steady downward might bring some relief for both of us, even though I’m sure neither of us will enjoy the process, and I know I’ll really miss her alert self and companionship.

  4. momsbrain says:

    That’s interesting to hear, that I seem to worry about Mom’s decline. There was a time when I WANTED her to decline so she would be out of it enough to not mind moving into a classic nursing home setting (vs. assisted living). It worked out OK, in that she accepted the move to the Alz center without a complaint (though I have noted the first two weeks in a more “normal” nursing home did not work out at all). Now I guess I am on the lookout for change – it’s as if I see that as my role now. I just talked in support group last night about this. Four of the people there had already lost their moms or spouses. I said there had been a time when I would have envied them – when Mom was miserable and I was stressed beyond belief. But as time has passed, and Mom has become this embodiment of contentment, I no longer feel that way. If she were voicing an interest in dying, I would feel the same way you do. And if she were suffering emotionally, I would want it to end. I am not in denial that her life is not at all what it was and could be. But with her in this current state, I like having her around. I miss my mom and I will miss this friend she has become, too.

  5. Megan says:

    That makes sense, Emily. It’s all so different for everyone, and always changing. Sounds like you’ve been all around the block with this.

    I wonder if my mom will ever get to a point where she’s not suffering emotionally. The head nurse at her place asked me why I hadn’t returned the form (or her call) about flu shots this year. I just gave her a quiet look and then she realized. End of discussion. In Mom’s current state, I feel like I’d really be doing her a disservice by doing anything to extend her life.

    It’s such a relief to say this to people who can understand the perspective, so thanks so much for the dialogue!

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