Taking care of our elderly

Last weekend I had breakfast with one friend, and dinner with another. They both are caregivers for their Moms. Both, however, have recently moved their Moms from home to assisted living/Alzheimer's units. The medical conditions are different in these Moms, and the personalities were different before the disease.

Yet, dementia brings on changes in personality that are as tough as they are predictable. Some is a loss of executive function, and the ability, nay desire, to say whatever enters your head. I remember "You can't be my child, because I don't have so many horrible genes". Some is anger at loss of function, or bluster for covering up mental lapses. One parent of a different friend became sweet and kind and charming. But that's the only one I can recall that the changes were perceived as an improvement.

My friends are women I've known for a while, the three years since I moved to almost-MRU. They've listened to me go through the pain, yes the pain, of watching my mother slip away. We've talked about this over the years. One friends mother is just in the beginning stages, and the other about a year behind my mother. The emotion burden is huge. And I will admit to feeling some relief when listening to them that these particular stages were over, for me.

One of the moms is angry. All the time. Painfully angry. Demanding people who are gone. Demanding the presence of my friend, all the time. It is hard to leave your crying mother, whether she is angry or emotionally bereft. I know this feeling. The only thing worse is when they forget to ask you to stay, just a minute more. Or when they can no longer scream at you, demand, plead.

The other mom has lost language. At first, language loss, albeit with speech, still, seems a relief. No more harangues, no more ridiculous requests, no more crying for people who have been dead for 20 or 50 years. But quickly,  for children caring for parents, this becomes a new loss. One of the things about AD is that you lose your parent or spouse or friend over and over and over again.

Each stage, each change is a knife in the heart. Some days, leaving my mom, coming home, I would look down at my chest and expect to see blood seeping through my clothes. I would think: this is the worst it can get. My mother was no longer crying for specific people, but tears and tears and tears for unknown sadness beyond words. There is often no way to comfort people with AD. They are angry, and then worse, they do not know you want to comfort them.


My friend, whose mother no longer has language, who is drifting into that twilight where neither mother nor daughter can see anything, showed me a picture of her mom. Here it is, with my friends permission. I took one look, and knew that it was the same picture I had of my mother. Our mothers, who remembering nothing else in their lives, remember being a mother.


14 responses so far

  • lucy says:

    God! It brought tears to my eyes! 4 years have gone by since my father passed away after 10 years of dementia. You couldn't have said it better. It truly shatters your heart each time. Hang in there!

  • EPJ says:

    Potnia, do you know how dementia is diagnosed? is it just behavior or something else used?

    I ask you because at this point there's criticism about psychology and psychiatry methods used to diagnose and treat people for issues related to brain, mind and behavioral changes.

    So, one thing you describe is the regression to earlier ages, and another one is the apparent mental isolation and fixation on some themes.

    Suggestion: try mind and body coordination exercises, like with the standard 5 senses, which anyway are linked to memory, and at the same time check out her food and water as much as feasible. Because there are too many things going on and that makes it harder to provide any fancy therapy or diagnostic that would work.

    • potnia theron says:

      There are standardized tests (the "mini-mental" is one). If you need something to read, I recommend "The 36-Hour Day". One of the authors, Peter Rabins, was a colleague of my mother's (dementia was her area of research).

      I know there is lots of debate about what constitutes a diagnosis of dementia, and the other attendant problems of the elderly. Linda Fried (now at Columbia) has worked on the idea of being elderly as a syndrome. I recommend her work as an introduction to many of the complicated issues that exist.

      As for my mother, she passed away at the end of last year. What I do for my friends is listen, and that is just about the best you can do.

  • respisci says:

    Spoke with my mother last night. "Do you know where I am?" she asked in a very chipper voice. "I am in a single room cabin with a TV. I will stay here for a bit to rest." Reality is that she is in a nursing home, and the described cabin is her room. Her voice was very upbeat though, and with AD patients, you learn to take advantage of a good mood. We had a conversation which required some careful navigation on my part to avoid asking specifics. At one point I recalled that it was my brother's birthday and asked my mother what year was he born (thinking it was a safe question). She had no idea. She was uncertain who was my brother even though she had just mentioned him just minutes before.

    • potnia theron says:

      Having those few chipper moments are to be treasured.

      One must be careful about asking questions. For me, they often led to more anger and being upset. My heart is with you on this journey.

      • EPJ says:

        Examples of the simple "drills' to use for trying to pull out the memories from where ever they are stored and start the cognitive cascade that I assume links the sensory experiences and memory:

        smell and touch---> crushing a leave or flower or food spice and repeating the names and short sentences
        vision and touch---> animals, plants, colors, pictures, text, and repeating names or short sentences that should be familiar
        temperature and touch---> cold and warm, by experiencing outdoor and indoor differences and the sun

        orientation---> brief description of up, down, left, right and walkinng coordination

        It sounds like a lengthy procedure, but it really can be introduced in a brief visit or interaction conversation.

        I think that this current society is punishing itself with self-defeating constructs that are claimed to be improving the future, but in just 2 generations you can see the outcome.

        Good wishes.

        • EPJ says:

          Science will thrive if somethings are changed and adjusted, but we have to start by getting off the fighting modality, other countries are seeing it and cooperating where feasible. The triggers need to be slowed and recognized, and mutual respect is key to overcome the problems.

          I think some detrimental events must have happened and people are in the fight-flee modality, which relies in intuition and I think memory, and body-mind resource optimization, but it is best suited for a short event rather than a prolonged one.

        • potnia theron says:

          These are interesting ideas, but as I mentioned, my mother died last year. see:

          As for this post, it is about the feelings I have had, the feelings my friends are having. None of us is looking for, expecting, or hoping for things to be different. We are telling our stories because that is how we cope.

          • EPJ says:

            Ok, I understand, and people should take good care of the elderly. They are a human treasure rather than a burden.

  • Zuska says:

    Potnia thanks for sharing this. I am sure you bring much comfort to your friends. In addition to breaking your heart daily, elder care can be so isolating. It is a great gift to listen & to share experience.

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