AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question QUESTION: My mom is 81 years old. She has had Alzheimer's since February 2006, we think she had the beginning stages in mid 2005. She had a couple small strokes in February 2009, which at that time she stopped swallowing and was placed into hospice care. She was put into a nursing home for her final days/weeks, but after being there two days she started to swallow again. It's now been 7 months. Her body is very stiff and they say her body in contracting. My questions is .... What exactly does contracting mean? She's also lost 34 pounds since February. She is in bed 24/7, uses diapers and hardly talks at all. Her Blood pressure is 90/60 most days and her pulse is 53-54. Is she fading away?
ANSWER: A lot of people in later dementia develop the kind of stiffness you describe. It's part of her progressive neurological deterioration. She doesn't just have Alzheimer's - she also has brain damage due to stroke, and it is entirely possible she has some Parkinson's on top of that. They lose control of their muscles, develop tremors, become rigid and stiff, spastic, and hypertonic- and they develop joint contractures.
Contractures are the result of immobilization and disuse. Their brains lose the ability to control their bodies - so they can't move, and their muscles atrophy - and the muscles get replaced with tissues that can't contract. Fibrosis develops in the muscles attached to the bone around joints, the tendons shorten, the muscles get shorter and can't stretch out without severe pain. In other words they start to lock up. By the time the person is in the final stage, it's not unusual for 40-95% to have some form of contracture. They are irreversible.
Generally, the signs that the person is in their final months include continual weight loss no matter what feeding strategy is tried, growing weakness and immobility to the point they slump over if they are not propped in the bed or chair, sleeping all the time, and starting to get frequent infections.
It is very hard to predict survival time. As you have seen for yourself, sometimes they surprise you - and sometimes they can live on for some time in what seems like quite dire shape. My mother in law lived for two years in the final stage - unable to walk, talk, or do anything for herself. Her decline was very slow, but she was very healthy other than her Alzheimer's and never had any strokes. Surprisingly, although she did develop some stiffness that made her hard to dress, she didn't have any obvious contractures (i.e. which can sometimes appear as joints pulled into awkward positions).
Your mom's blood pressure is right on the borderline between normal and low - hypotension would be anything below that 90/60 mark, but it's not surprising in an immobile, bedridden person. Persistently low blood pressure will ultimately cause organ failure - but you already know that she has limited time left.
It sounds like your mother's situation is much more complicated than my mother in laws, given her history of serous stroke. However, it may be several months or even a year before the end. I know this is painful and difficult to watch. She may slide slowly, or go fast from another stroke or an infection. I wish there was a better answer.
I hope that hospice care is still an option for her, since I really believe palliative care is the kindest, most compassionate option for this phase. You want her kept comfortable, out of pain, and as serene and peaceful as possible, and you don't want a lot of fuss and bother, tubes, drugs, tests, treatments or trips to the emergency ward. It's time to love her and let the tide go out, as gently as possible.
I'm thinking of you and praying that you know are doing the right thing - I'm sure heart and soul that you are. You are making sure she is well looked after, and surrounded by caring. Beyond that, it's out of our hands. Wherever she is, she knows you care and want the best for her.
Mary G.
Toronto
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QUESTION: Exactly what qualifies as "hospice care"? She has a hospice worker who comes in to the Nursing Home twice a week, and I believe it is for maybe 20-30 minutes each time. When does she get to the point where she gets "more" care from the hospice workers? I thought that the hospice workers were with the patient between 6-24 hours a day....?
Can you please explain how that all works?
And are there specifically "Hospice Facilities" that are ONLY for hospice patients?
Answer Hi Debbie, you don't mention where you live so it's hard for me to know what kind of program she is in at the nursing home. You are right, it seems odd, and yes, there are free standing hospice facilities.
Here is some general information on hospice and palliative care in the US, including lots of places to look for assistance.
If you do a google on the name of your state with the words hospice and palliative care, you should come up with local organizations and resources where you live.
Hope this helps. After you do some reading, it might be a good idea to have a care conference with the hospice worker and the nursing home to discuss next steps, and better understand what services she is supposed to be getting.
