Alzheimer`s Disease/Lewy Body Dementia
My mother was diagnosed with Parkinsons 10 years ago, but later started to have unexplained periods of unconsciousness,hallucinations and confusion, which would pass after hospital visits. Sometimes this was concurrent with bouts of pneumonia, sometimes not. She was not diagnosed with Lewy Body until it became worse, about 7 years ago. About 3 years ago she was definately impaired and needed in home care while I was at work, as well as my care. In the meantime she also was dealing with severe back pain and has been on high doses of hydromorphone for 10 years. She also has a pacemaker and had a bout of Norwalk a year ago.
She went into hospital 1.5 years ago with a broken arm from a fall, continuous bladder infections and 2 more bouts of pneumonia. This was followed by extended care 1 year ago, but she has been infection free since Norwalk attack.
She has made her wishes clear and wants to go ASAP.Currently she is speaking mostly in her first language but mostly does not make sense. She is extremely agitated and constantly trying to stand, resulting in falls. She is restrained with Ativan and a reclining wheelchair. She has lost about 80 pounds in the last 2 years and has been eating very little the last 2 weeks. She now has another bladder infection. She no longer asks to be toileted and only occasionally for fluids. She can get very angry about not being allowed to get up and the ativan isnt helping much.She sleeps 10 hours at night and 3 hours during the day.
She is very afraid, unhappy and depressed and I can't help her. I wonder how long she has. I know there is no answer for sure but the periods of lucidity are gone, just a sentence here and there makes sense so I can't ask her how she is feeling and get an answer. Can you give me any idea of stage and what will be next if she continues to survive?
ANSWER: Hello Sandra: I'm so sorry to hear of your mother's very long and difficult journey. Hearing all that she has been through I'm surprised that she has held on this long! As you know, there is no way to tell just how much longer she will continue, but to me, it doesn't sound like much longer since she's had these diagnoses for so long already. I would suggest she be placed on hospice so they can come in and evaluate her status, give her meds to keep her comfortable and allow nature to take it's course with any infections. They may be able to give her a medication cocktail that helps the pain as well as the agitation so she's more comfortable. Since you already know her wishes are to be allowed to pass on "ASAP" I think that would be in keeping with her wishes. She's definitely in the late stages of the disease so the end may come for her from dehydration leading to heart failure, or if the infection isn't addressed, then the toxins would likely build up in her blood and she would likely go into a coma before passing. It sounds awful, but in my experience with elders, it's not a painful way to die. I wish I could tell you more, but there is just no way for me to know. After evaluating her, a hospice agency, or her physician would probably be able to give you a better idea. My heart goes out to you as you continue to help your mother on this very difficult journey. Cindy
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QUESTION: Hi Cindy,
Thank-you for your response. Of course, being Lewy Body she improved again, went back to English and makes sense some of the time. She was put on low doses of Seroquil, may help. But this phase will only last a few days. Unfortunately they will not consider hospice an option where I live unless she is dieing and needs more help than the nursing home will give. I have asked before and they say she is not advanced enough and dementia patients don't usually go to hospice.But I will ask her Dr. again
Pls don't feel you need to respond unless you have something to add. You are the first person who has given me an honest answer about her timeline and I appreciate it.
Hello again Sandra: I'm glad you were able to take some comfort from my answer. The only other things I would add--aside from pursuing the hospice angle, is to be sure she is being subjected to things that help to calm her. What is her favorite music? Can you get some headphones and put them on her when she's agitated? Does she enjoy babies or cats or dogs? If so, then get a stuffed animal for her to cuddle or a soft babydoll. One small study I read about found that elders with dementia who were calling out continuously were soothed with fleece covered hot water bottles! Try to find what will calm her and then be sure the facility is utilizing that. For her sake, and for your sake, I hope you can find some things that work. Bless you Sandra and please remember to take care of yourself too. Cindy