Hospice being a good thing

Mom has been deemed eligible for hospice care. And I am glad. To me, it doesn’t mean death is imminent – though a life expectancy of six months maximum is an eligibility requirement for someone who enters hospice. It means she is getting more care that is directed at keeping her comfortable. Already, the hospice nurses have added anti-anxiety medicine as needed and replaced extra-strength Tylenol with Tramadol to treat the pain from her open foot wounds. There is a standing order for morphine if she cries out in pain when nurses change the dressing on her feet. I don’t really feel good about having a beef with Mom’s care on the other side of the Alz center, where she spent six years, but she went quite awhile without pain medication after the sores opened up on her feet. I don’t understand that. But it’s the past, it was remedied on the skilled care side when she moved, and she is more alert now, I assume because she feels better.

The hospice eligibility determination came just days after my best lunchtime experience with Mom in months. When I arrived to feed her, her eyes were open and she was vocalizing a lot. She seemed a little restless – I sense she doesn’t have complete control over her limbs even though she can still scratch her nose or ear as needed. She might have a little spasticity problem – stiffness and tics – that I suppose could be an indicator of the latest deterioration in her brain. She responded to my presence and seemed more alive, I guess you could say, than she had for a long time.

I was surprised this past Sunday to find that she had not been wheeled into the dining room for lunch. The staff members routinely put her to bed after breakfast, and I knew that. She is a very good sleeper. But I had never known them to leave her in bed during a meal. I found her asleep on her side hugging a body pillow. She woke up without much trouble, but I could tell I had startled her. An aide brought her lunch in and repositioned her so she was somewhat upright. I stood to feed her under these awkward conditions and she did very well, chewing with enthusiasm. It was harder to get her to drink – I would try to push her head and shoulders forward just a tad, but she does not – or maybe can’t – help at all with leaning forward and it seemed to irritate her. She said a few words: I asked her if she wanted some water, and she said, “Yes.” Very clearly. And when I was rearranging the collar of her shirt to make sure I hadn’t spilled any food on her neck, she said, “Don’t do that!” The words, when they are spoken, aren’t necessarily as clear as they used to be, but I can tell the difference between an actual word and her usual nonsense syllables.

The Alz center staff initiated the hospice evaluation after testing Mom’s albumin, a protein made by the liver that circulates in the blood. The test showed that her albumin was low. The social worker described this to mean that Mom’s body is working so hard to keep her organs functioning that her skin is effectively being neglected and breaking down. Hence the foot sores. And on top of those, abrasions on both knees (one has scabbed up and healed and the other just appeared) and a scratch on her face, near her eye (we think she did this to herself, probably). It doesn’t take much to break her skin now.

The social worker was very timid about telling me over the phone that the staff thought a hospice evaluation was in order. I assured her that I could handle this suggestion emotionally, and that it was OK with me to go forward. During the first evaluation, a nurse spent time with Mom while I talked to a social worker and filled out admission forms. It turned out that the nurse couldn’t convince the doctor in a phone call that Mom was a good hospice candidate. I found it a little disappointing. Then, about 10 days later, the admissions director called to tell me Mom was now being admitted. She showed enough hints of decline in the span of those days to become eligible. The first nurse had shown me a checklist that is part of a hospice eligibility assessment – weight loss, speech limitations, immobility, etc. One of the last things to go in Alzheimer’s patients, according to the checklist, is the ability to smile. Mom can still smile, though it’s rare. I’ll be watching to see if that changes.

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3 comments so far

  1. Ruth Gerstner on

    As you and your Mom near the end of this journey, I hope that it is as peaceful and pain free as possible for both of you. There is no way to make this anything but hard, but I found hospice to be a comfort when my mother developed a terminal condition. Love to you.

  2. Suzanne on

    Hospice was a God-send for my mom. She actually lived 13 more months in hospice, but the designation ended her constant trips to the emergency room for treatments that would ease symptoms but not the cause. She was kept more comfortable and felt better for most of those months. So — I hope hopice also brings your mom more comfort and relief from pain, and you some relief as well.

  3. momsbrain on

    Ruth, Thank you. I’m glad to know hospice provided you comfort at that difficult time.

    Suzanne, I’m glad your mom could keep the designation for that long. I just know of one woman at Mom’s nursing home who “survived” hospice and lost her eligibility after some period of time. Mom has definitely benefited from meds that keep her calm, and I have appreciated that.

    Thanks to you both for commenting!


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