A long road

The signs of Mom’s decline are not just behavioral. Her skin seems to be breaking down. She still has one wound on her foot that won’t heal, and another wound has opened. She also has black spots on her feet – a sign of deterioration under the skin. And she has an abrasion on her knee. I thought I might have caused it – I wheeled her into a table by accident on my first attempt to “drive” her wheelchair. She yelled out in pain, but I would never have guessed that it broke skin – a bruise, maybe. But I think it doesn’t take much to cause her body harm at this point. A nurse thinks it might have resulted from Mom’s knee hitting the wall next to her bed, so the staff have put an air mattress between her bed and the wall.

Mom has been moved out of the Program Area at the Alz center – the bustling, open space that houses most activities and patients who are fairly mobile and functional. The social worker called to ask me if it would be OK if she moved to the skilled nursing side of the building, the place many patients go when they have declined substantially and require more care. I guess I could have said no, but I think deferring to the facility’s request makes sense in this case. She is too much for the Program Area staff now.

Leaving the Program Area is a loss for me, if not for Mom. She has been there for six years so I am familiar with patients there, and the staff, and the atmosphere is welcoming. But I like the idea of Mom having more care, especially with her skin problems and the potential pain they’re causing. A nurse called me today to tell me about the second wound, and I asked if these wounds hurt. She said she will ensure Mom is being treated for pain because we just can’t tell. But chances are something like this WOULD hurt – assuming pain signals are normal, which they might not be.

Mom is in a new dining room for meals now, and I have fed her there twice and missed one week while I was sick. In the two weeks between lunches, she deteriorated visibly. Yesterday, she seemed to be in distress – she was tense, which I attributed to her probably being cold, and she had more than the usual number of involuntary whole-body tremors. She kept her eyes closed and her head tilted back, and occasionally let out a slow moan. It was terrible. She did not do very well chewing meat – a first in my experience – so I fed her mashed potatoes and a few carrots and lima beans, but focused on giving her the whole bowl of high-calorie cereal – the consistency of cream of wheat – that she gets with every meal and the filling from a piece of apple pie. I do believe she will still appreciate a sweet taste in her mouth. It was almost as if she was just refusing to wake up, but it created a choke hazard, I thought, because she would not raise her head. In fact, for most of her meal, I stood and kept one hand behind her head to keep it as upright as possible. I couldn’t tell if she just refused to wake up or was unable to, or if even in an awake state, she can no longer control her body in the way she wants to.

The nurse who called today said the skin problems could be a sign that Mom might be ready for hospice. I have wondered what would trigger that. The nurse seemed to be treading lightly, and I told her: “Don’t be shy about talking about this. I think Mom’s existence at this point is awful and sad, and I wish she could fall asleep and not wake up.” I’ve said that before to friends, but I don’t think I’ve written it, and I’ve never said it to the staff. And she said, “OK, good to know. I wasn’t sure.” I’ve known her for awhile, but we are bonding a bit more now in talking about Bonnie and how to make her as comfortable as possible.

Another daughter was in the dining room with her mother yesterday, and we caught up briefly. We both used to go to support group, but we’ve both stopped. Her mom looked alert and is a good eater, but she has been in a wheelchair for years. She spent six months in hospice but was released because she kept surviving. I said about Mom, “She’s a wreck. I have never seen her this bad.” And she said, “It’s a long road.” You better believe it.

8 comments so far

  1. Liz Palika on

    When I saw your email with this post, I actually wondered if you were going to tell us your Mom had passed. I don’t know why I thought that but it’s what came to mind. Hugs to all of you.

  2. momsbrain on

    Hi, Liz. We are approaching 10 years since diagnosis, so it’s a reasonable thought. The nurse who called today usually says, “Mom’s fine,” as the very first thing. She didn’t do that today. Thank you for the hugs.

  3. Julie McDonald on

    Oh, what a horrible road you are on. Your sharing this story is a great help to me but I feel very sad for you. Know that we are thinking of you,

    Joolz xx

  4. A'ndrea Elyse Messer on

    I don’t know which is worse. My mom died suddenly over 30 years ago, but, she was only in the hospital 4 days. I would have loved to have her longer, but, somehow I think I may have gotten the better of the deal. Love.

  5. 2011days on

    I do think of you so often hoping that things are emotionally manageable the majority of time. Since our Mom has been in at home care with hospice coming in and out, Fred and I on 24/7 alert with her CHF, it’s hard emotionally, of course, but physically exhausting. Every morning is akin to waking in a foreign land where we have no idea what the day will bring. So many times, I have looked back to your early writings, when you were dealing with so much, so many feelings. Anxiety, guilt, worry, all while trying to maintain your own life. Those writings have helped me in where we are now. Even though we are blessed with no cognitive deficits, how you have been able to function and deal with each day, and every emotional reaction, you have, and are now, inspiring me, encouraging me to take each day as it comes. thank you

  6. momsbrain on

    Sorry for being slow to respond to everyone…

    Joolz, thank you for your kind thoughts, and for reading and commenting. I am doing OK, and writing about it gives me a chance to reflect and experience my emotions, and then try to set them aside so I can appreciate all that is good in my life.

    A’ndrea, I have a theory about this. I think the sudden loss of your mom must have been just horrible for you. But I do think those who experience sudden death are far better off than Alzheimer’s sufferers – that sounds morbid, but I just mean that avoiding prolonged illness and the fear and sadness that go with it would be my own preference for myself. As for the families – it’s no good for either of us. I really feel for my friends who lost their parents or spouses to unexpected death – it strikes me as something that would be very hard to recover from. It has been a long road with Mom, but for much of it, I was able to feel love from her and for her, which has helped me get through the sadness of the disease. Thank you for reading, and love back to you!

    2011days, I really do feel grateful that the writing I have done could be helpful to you. It functions as therapy for me but I do hope that people can see that 1) they are not alone in having complicated emotions and 2) even under terrible circumstances, good things can occur. And we can make it. I’m sorry that you are going through this stage with your mother, and I can completely imagine the physical exhaustion. You probably can never fully relax. And that feeling of dread and anticipation – I’m sure it is very difficult. Thank you for your kind words, and know I am thinking of you at this time.

  7. Kay Garrett on

    Dear Emily, I have your name pencilled on my “to-do” list, as I’ve wanted to thank you for your blog. Lately I have been worrying about you, wondering if your Mom had passed and how you are doing.

    Your writings have saved my sanity and my heart so many times. You have been able to honestly convey your emotions and talk about your Mother’s slowly changing circumstances in helpful ways.

    For example, I drove in tears for 50 miles after a visit to Mom at Sunrise on Scioto. Then within a few days you posted about your own tearful departures. Wow!

    My Mom only and always wanted to “go home” to the Ohio Valley so leaving her was 18 months of awful. My sister and family live in Columbus, and I live away. Mom had good care, and I had confidence in that, but regardless, the decline of a loved one with a dementia demands heartbreaking endurance.

    I have thought of you often, especially on Sundays, as I think you were visiting her every week for lunches, and those visits were becoming so difficult.

    Hospice is a good bad experience. We were with Mom for 8 days, around the clock, at Ohio Health’s Kobacker House. Her Living Will instructed us to stand down when two doctors determined there could be no good outcome from any treatments.

    Mom received constant comfort care, pain and anxiety medicine, and mouth swabbing. We were told the body no longer can process food or water and giving it would be a kind of torture for her. She died peacefully.
    My thoughts are with you and Bonnie. KG

  8. momsbrain on

    Kay, Thank you so much for this message. I’m so glad that what I write can be helpful to you. The loneliness of caregiving is just one of the many hard things about it. So I like it when people can read my blog and know they aren’t the only ones experiencing dread or having thoughts that inspire guilt. My mom is still with us, though more compromised than ever. Her mood seems stable and her pain is being controlled aggressively, finally, which is important to me. I’m sorry you have lost your mother – and that the dying process took so long. Even though I know hospice people can identify “active dying” symptoms, I think it’s interesting how unpredictable it can be. An individual experience, just like everything else. I guess. Take care and thank you again.

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