D is for Dementia (not a topic about Trump & Biden)

[JulianLondon]

On another post there was a brief mention on admitting, recognising and accepting dementia.

Sorry if this discussion has been exhausted elsewhere but it struck a chord as an elderly relative is clearly hiding early-onset Alzheimers and it felt that indeed there is an incredible bravery in those who accept/admit and even discuss it with those close to them.

My mother is a little like the character at the beginning of 'Still Alice' who is trying to deal with it alone and seems to be fighting it which to a point perhaps should be accepted but is sharing and acknowledging it always right? I worry for some that admitting it will mean the fight becomes weaker rather stronger but long term it has to be shared so loved ones can say goodbye before time runs out.

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[People with even very slight dementia know it. My mom told me long before I 

Noticed.

Grow up.

I have been around people entering dementia for a very long time. I can tell you, your mother was beyond wonderful, to you and her family and friends, and most of all to herself, to recognize her decline and share it, and I presume to make the most out of what she could. You have been truly blessed. But many do not, and in fact, refuse to listen to those who they love as they try gently to explain that things aren't quite what they used to be. I am not simply parroting media in this. I think I see in Biden what I have seen in many others. I like Biden. It makes me sad.]

[+ Charlie]

"Dementia" manifests itself so variably that one really needs to discuss individuals rather than the condition in very broad terms. I took a caregiver's education course two years ago after my spouse was clinically diagnosed as having Alzheimer's, but those of us in the course were all having such different experiences with those we were caring for that sometimes it felt like we were talking about very different diagnoses. Some of their patients were angry, even violent, at times, and others were very quiet and even seemingly disconnected. Some patients understood, accepted and tried to adapt to their changing states, while others were in denial or simply couldn't understand what was going on. I was warned to prepare for reactions like paranoid delusions or fear of darkness or water, none of which have developed in our case. I expected that by now my spouse would be fairly incapacitated, but in fact he can still drive a car and play Bridge quite effectively. His main problem is increasing loss of memory, both short term and long term, but even that is not very predictable from day to day, so it is hard for me to know whether to expect him to remember who someone is or how to work the microwave today. The one thing I can be sure of is that he won't be able to learn anything new, whether it is how to play a new game or why he needs to wear a face mask. Some patients' personalities undergo major changes, but so far I have been lucky in that his is no different than it was a half century ago. I am also lucky in that I have a model to work with: his mother, who underwent almost exactly the same changes at the same ages; by the end of her life, she didn't understand where she was and often didn't know who we were, yet she was still recognizable to us. I will still be lucky if that is the worst that happens.

 

Because our doctor was proactive when my spouse and I both became concerned about his memory problems, we were referred to a specialist, who was able to obtain a PET scan test that revealed the typical Alzheimer's dementia plaque on his brain, and then tried some of the drugs which have been found to slow its development. Different ones work differently for different people, and after a couple of attempts, he found one that seems to help without causing unacceptable side effects. But they do become less effective after regular use, and we are both starting to see that happen now. I believe that knowledge and professional intervention is worthwhile, rather than ignoring or encouraging the patient or the caregiver to ignore the signs of dementia in a loved one, uncomfortable as confronting it may be.

[JulianLondon]

Charlie that is so interesting, thank you for going into so much detail. It probably is a case that knowledge is power in helping your loved one. Diagnosis and some treatment even if perhaps later on it's palliative must be the right thing to do. I feel strongly my mother wants to deal with it her own way, being that sort of individual. She basically has an addiction to scrabble on her phone to keep her brain active while forgetting the most recent of things and remembering all things from her childhood.

 

I think I will bite the bullet and encourage a conversation on the subject and hope she is keen to share what is clearly becoming a greater burden.

 

I wish you and your partner the very best in your ongoing journey with this dreadful disease.

[+ Charlie]

It's funny that you mention Scrabble, because we used to play often and stopped years ago, but we have gone back to playing together again. However, he couldn't do it on a phone, because he can't remember how to make even a regular phone call. He has also done crossword puzzles for years, and still does a couple every day.