Minding Our Elders: Mom needs stronger pain reliefDEAR CAROL: My mom is 87 and lives in a nursing home. She has mid-stage Alzheimer’s, advanced arthritis and is nearly blind. Mom hates to get out of bed because of pain and eats very little. Her memory is poor and she doesn’t want to take part in activities.
By: Carol Bradley Bursack, INFORUM
DEAR CAROL: My mom is 87 and lives in a nursing home. She has mid-stage Alzheimer’s, advanced arthritis and is nearly blind. Mom hates to get out of bed because of pain and eats very little. Her memory is poor and she doesn’t want to take part in activities. The medication that the doctor prescribes for her arthritis doesn’t come close to controlling her pain. I’ve asked her doctor about hospice care but he says that she doesn’t qualify because she’s not considered terminally ill. I say her quality of life is so poor, and she has all of these problems, that at her age she should qualify. From what I understand, hospice could give her much better pain control. What can I do? Cheryl Lynn
DEAR CHERYL LYNN: I’m so sorry for you as well as for your mom. I, too, have had to watch loved ones live with unrelieved pain and wondered what it would take to obtain the relief they needed. The nursing home and doctors who cared for them always did their best, but they were limited by law in what they were allowed to prescribe, even though they recognized there were medications that could have better controlled the pain. Therefore, my loved ones’ quality of life diminished and their pain remained unabated until there was evidence of terminal disease. Then hospice took over their care and pain relief followed, along with increased quality of life.
Your mom has Alzheimer’s which is a terminal disease, but in general to qualify a patient for hospice, a doctor must determine that a person only has six months or less to live. Your mom’s Alzheimer’s likely hasn’t reached that stage yet. There is a scoring method used for this determination, but of course there are factors that individual doctors may view differently. Apparently, your mother doesn’t qualify for hospice care because the doctor doesn’t feel he can state that she fits the guidelines.
You may want to ask for a second physician’s opinion. Some doctors are more reluctant than others to give the most extensive pain relief possible. They don’t want to over-prescribe, which is understandable in many cases, but in my opinion not warranted for someone like your mom. When severe pain is a daily companion and keeps a person her age from even a modest quality of life, pain relief should be a number one consideration. Naturally, it’s possible that the second doctor won’t have any better options than the physician she is now seeing. However, it’s worth the effort to find out. Many people live longer than six months while under hospice care and some improve and go back to regular health management.
Watch your mom closely, keep up a dialogue with the nursing staff, the care home social worker and your mom’s doctor. Make it very plain to everyone managing your mom’s health that her quality of life is more important than the length of her life. Let them know that you want her to have the best pain management possible, including hospice care if and when she qualifies.
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.