if you think they don’t know think again

15
Sally* reads a book with Mom

Sally* often read books with Mom

July 14, 2014: Mom is at my place for dinner on July 14, 2014, partly because I feel awful leaving her in an environment that causes her to become anxious, partly because her one-on-one care has been scaled back to nine hours per week from thirty-five (about a quarter of the dedicated care she’d previously had), and partly because she and I enjoy each other’s company.

Mom is happier and more engaged when she is with me or a companion who helps her get up and walk around, guides her through mealtimes, sings with her, chats with her or just sits with her in silence. Nursing home employees don’t have time to deliver that kind of care; the ratio of caregivers to residents doesn’t allow it. In fact, many aspects of dementia care are inadequate worldwide.

Furthermore, some people think it’s okay to deny people who live with dementia small pleasures because they seem not to be aware of what’s going on around them. Some people think it doesn’t matter how we treat people who live with dementia because they often forget everything the next minute. But they are aware, and it does matter, and some things are felt and remembered deeply even if they are superficially forgotten.

It’s true people who live with dementia are often confused and have difficulty articulating, but that doesn’t mean they don’t think and feel and have awareness. My Mom does, even in the advanced stage of the disease. I’m sure the same is true of many other people who live with dementia. If you think they don’t know, think again! Most of the time Mom talks in what seems like gobbledegook or she parrots what someone else says. That’s her way of engaging with others, of being in community. Sometimes it’s clear she knows exactly what she wants to say, but she struggles to find the right words or to get a complete sentence out.

Yet, despite the medication she is being given and the late stage of her disease, Mom is more aware than she is given her credit for. I hear it in what she says. I see it in how she behaves. I also observe the effects of anti-psychotic medication on her, and I know how much more alive she is when the medication wears off. She is there and she counts, even when others count her out.

Likewise, there are breaks in the clouds when she becomes lucid and articulate. Tonight, she is astonishingly present. We talk of many things, including Sally, her one remaining one-on-one caregiver. I cry tears of sadness and frustration over the tragic fact that instead of being increased, Mom’s one-on-one care has been reduced. She comforted me, we laughed, and in the end we agreed it’s better to cry together than alone:

 

I’m grateful to have conversations like these with my mom, and even more so that I record them so I will be able to replay them when she’s gone. I hear the wisdom she retains despite the disease, and know without a doubt that her fierce spirit will be with her until the very end.

*not her real name

Subscribe to my free updates here.

15 Comments

  1. Pingback: heaven can count

  2. Yes they do know!!!

    If loved ones, friends would spend more time with them they could see that. But they don’t and all they see is the disease. They find it easier to not associate. (Jmho)

    🙂 <3

  3. How heartbreaking Susan. I definitely would NOT want ANY of money preserved for my nephews and nieces if it would mean getting better care. It really makes you think about getting your wishes down on paper (Living Will) as clearly as possible. How clear do you have to be to say “I want all my money spent on my care, with no expenses spared at all to ensure that I am as comfortable as money will buy!” You are such an amazing women Susan, your mum is so fortunate to have you and I guess Karma will take care of the rest…. your mum sounds very lucid in the voice clip.

    • Thanks for answering my question Mila.

      Apparently one has to be extraordinarily specific. For example, to write that you wish your lifestyle to be maintained to the standard to which you have been accustomed is open to interpretation. In court I argued my mother loved to live well, the “opposing” side said she was extraordinarily frugal.

      I’m in the process of preparing my own power of attorney and mandate in case of incapacity and believe me, I will not make the same mistakes Mom did…

  4. Karen Eisenberg on

    I am not an expert and I don’t have a relative with Alzheimer’s. But based on everything I have heard and read, the pattern of degeneration in Alz and other dementias is largely one of regression – the patient becomes more childlike.

    Anyone who has had a child knows that a 3-month-old baby is keenly aware of the emotional temperature of a room. If two people argue in front of the baby, they will frown or even cry, even though there were no raised voices. They’re not scared, but they don’t like the tension.

    If a young baby does this, why do we assume that an adult who still functions at a much higher intellectual level doesn’t do exactly the same thing?

  5. Very unfortunate that whomever is handling your mother’s finances has chosen to neglect their power and responsibilty. I hope you can successfully advocate on her behalf. Is withholding care not against the law?

    • Yes, it is unfortunate. My advocacy has produced mixed results, and left me powerless to do anything but use my voice and even that is limited.

      Yes, withholding care to the point of neglect is against the law. But Mom is not neglected in that sense. In fact, she gets far more one-on-one care than any of the other residents in the same facility. HUGELY more. Which I think speaks volumes about the way we see our elders and aging in general. Maybe the boomers will change that, but oh boy, we need to get on it fast.

      I’m in the enviable personal position that I can spend time with Mom every day. Most people are unable to do that for a multitude of reasons. Of course I created circumstances that allow me to be here for her, and my choice is having significant impacts on other aspects of my life, but I’m doing what I’m doing because the experience is enriching, though admittedly also extraordinarily difficult. I cannot walk away; she’s my mother.

      If Mom did not have the means to afford care above and beyond that which is supplied by the nursing home, there would be fewer options. But she does have the means and there are options. Diametrically opposed views on wealth and the available options have created conflict.

      I think my mother would prefer not to be medicated the way she is and instead for her money to be spent on herself and her care rather than preserved for her heirs. Those who are legally responsible for her care have a different view.

      You have children; what would YOU want if you were in the position my Mom is in? If your children were financially secure, would you want them to spend your money freely on your care? Or would you want them to be cost conscious to the detriment of your well being so your money could be left to them when you die?

      I think many people live lives of penury so they can leave their money to their children. I don’t have children but if I did, that wouldn’t be my choice. I don’t think it would by mother’s either. But she can’t answer the question now, she’s incapable.

      There’s no right or wrong answer, just different wishes. What I have learned in this mess is that it’s critical for people (particularly parents) to clearly spell out IN DETAIL in the appropriate legal documents what their specific wishes are so there is no room for interpretation and/or conflict in case of incapacity or death.

      By not clearly communicating her wishes before she became ill, my mother inadvertently lay the foundation for the deplorable situation which has torn our family apart. Sad but true 🙁 She would be wild at us all. On the other hand, I am my mother’s daughter and I believe she would want me to fight for what I believe is right.

      It’s a complex situation full of paradoxes and pitfalls 🙁

  6. I don’t have a loved one with dementia but I do volunteer at a local memory care facility. I too witness the staff passing by the residents without a smile or friendly greeting. Or the guy who’s pulling a large cart quickly down the hall like he’s in traffic – no consideration for the lady with a walker that’s in front of him. The employees seem to have too many tasks that they don’t have time for the residents and this bothers me. I assume the staff started out caring and wanting to help but the facility has taken away their ability in many cases. I do see a lot of engagement but I witness the lack of consideration too much. Susan, I continue to learn from what you write and I thank you for this because it is helping me become who I want to be.

    • I agree Mike, the system is terribly flawed. It’s not the fault of the employees. Working in a care facility must be one of the most difficult jobs on the planet. I have tremendous respect for the nurses and caregivers although there are those whose talents I think would be better employed in another field – few people are suited to this kind of work which is exhausting from many perspectives.

      Thanks for your kind comments and your ongoing support.

Leave a Reply

%d bloggers like this: