DEAR CAROL: My mom is in late-stage dementia. According to the doctor she would be expected to sleep quite a bit, which she does. She’s on a strong opioid pain patch but she still seems to be in pain when she’s awake. It’s her agitation and gestures that clue me in. She’s had severe osteoarthritis for years, has had both hips replaced and has spinal spurs.
I’ve asked the doctor if she is ready for hospice care but he says that since she sleeps so much she’s probably not ready yet. All I want is for her not to be in pain. What more can I do? – Beverly
DEAR BEVERLY: There was at least one study conducted to determine whether people with Alzheimer’s disease feel pain the same as those who don’t have the disease. The results of this study showed that Alzheimer’s disease did not alter the sensation of pain. It only altered the person’s ability to report that pain. Alzheimer’s is only one type of dementia, but it seems logical to me that this study’s findings would extend to most types of dementia. Your vigilance is exactly what your mom needs and I encourage you to stay on this until you get some action, even if that means obtaining a second medical opinion.
Your note touched me personally since we went through a similar experience with my dad. He had dementia brought on by failed brain surgery. After 10 years in an excellent nursing home, Dad was obviously declining to the point of impending death.
He, too, would show signs of pain when he wasn’t sleeping, even though he couldn’t articulate that pain. He was already on a powerful pain medication. However, since he would spend his waking time pounding his fist into his hand and grimacing as if he was trying to pound out pain, I talked with the nurses and the social worker at the nursing home about my concerns. They agreed with me that his pain level was too high. Still, the doctor claimed that since Dad slept as much as he did, he couldn’t be in that much pain and therefore didn’t qualify for hospice care.
Eventually, a determined nurse was able to convince the doctor that Dad was indeed in too much pain. Once hospice came on board, Dad’s whole world changed. The body language that expressed pain was gone and he was content. We were able to enjoy each other’s company as much as was possible under the circumstances. He remained pain free for a couple of months until his heart eventually gave out.
Since your mom’s in late-stage dementia and most dementias are terminal diseases, she likely qualifies for hospice on those terms alone. Whatever the doctor’s reasoning, I think you’re right in challenging it. You are in a better position to judge your mom’s body language and mood than her doctor since he or she only occasionally sees your mom or reviews her records. Seek a second opinion if you must.
Hospice will work diligently to make sure that your mom’s pain is well controlled. You’re doing your job as her advocate and I commend you for that. Don’t give up until you see that your mom is receiving the pain relief she deserves.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.