My mom's Alzheimer's disease is so advanced she completely forgot how to talk (and rarely does so--and when she does she can only say "what" or "hi"--barely), unable to walk (she cannot focus on the task), and if I do not do range of motion her arms will become contractured. So I do range of motion a few times a day to prevent that. She is kept alive with a feeding tube. Many times she reminds me of Terry Shivo and I often feel very lonely because I can no longer interact with her other than basic duties of tube feedings, free water flushes, and endlessly changing her. I get her bowels moved every Tues, Thursdays and Sundays using cooled black coffee (1/2 cup) and a half cup of prune juice down her tube. Works in a few hours..that and lactulose the night before. I use the Hoyer lift to put her in the living room chair DAILY, but she stares into space. Now sometimes she watches tv. I can tell she likes the change. She is practically brain dead but her body keeps on living so I may end up putting her in a nursing home because I feel I'm caring for a living-dead person. Even with her advanced state I would find this incredibly difficult -- that is why I am still her sole caregiver and she is at home. She is literally draining away my life....but I still love her more than anything else in the world. that's why I go through extraordinary means to keep her maintained despite she rarely says anything. She almost died twice this year, but I got her through those problems and she is fine now.
Did you know it can take 2 to 3 weeks to die of dehydration even under hospice? I can't bear to watch that. It's monstrous..so yes I revoked her hospice to get the tube put in, and on discharge she was reinstated on hospice so they provide me with all the tube feedings, pump, tubings, surgical supplies, etc. she has a feeding tube and doing well with it despite the hoopla "evidence-based research" articles tell you (they are all dead set against putting a feeding tube with someone with end-stage Alzheimer's). The surgery only took 10 minutes. Risks are there of course with any surgery, but the truth is it is minimal. No she does NOT attempt to pull out her tube--she is not even aware she has one. So you know I held off doing this until she went into kidney failure due to dehydration since it took all day--one teaspoon at a time--to give her a cup of thickened water. So now her Alzheimer's disease is so progressed she has no idea she has a tube in her, and was not even aware when I put her in the hospital.
The main danger of it getting dislodged is NOT mom..but if I do not keep it in some kind of binder it may get caught in the sheets and while turning/cleaning her accidentally yank it out. So I bought TUBE TOPS at Amazon and use those for "binders" and tuck away the tube so this kind of accident will not happen. Those tube tops are very comfortable for her.
Thanks to a very understanding employer and my best friend I still maintain a job but I can only work a few hours a week. While I work he watches her. and I managed to get my bachelor's degree -- I worked very hard for best grades so I won scholarships so my college degree was free.
Mom is 90 years old. Believe me the last 5 years were very hard on me. That's when she when she went end-stages of Alzheimer's. She had symptomatic Alzheimer's disease for 10 years. I do not believe she will last beyond this year..but hey she reached 90. Mum had her feeding tube put in July 12. She would have died of dehydration without it. Early part of August 2019 she reached her 90th birthday. Despite everything I am thankful I still have my precious mum. I love her more than anything in this world. Let me assure you as for "quality of life" mum is very comfortable and painfree. She is not on any narcotics or psychotropics. Her Alzheimer's disease is so far advanced she does not need any of that..so she really is very peaceful and calm all the time. Leave it all to God.
Hi. I'm a c.n.a. and its very hard to let go of the ones you care for.I have been doing this for 15 yrs. And it never get easy. But I had to quit my job so I can stay with my dad 24/7. I only get out for store and maybe a movie with a friend. It very different when its family.
Thank you for this article. As I read this, I was thinking of the several professional caregivers that I know on this site. I read their words and I can see how much they care for their "clients." And I was also thinking of the paid caregiver I hired on Saturdays. I saw how she interacted with my father with calmness and patience. I could tell that she cared for my father. I felt sad when I had to release her due to financial matter. This article helps us see that professional caregivers Do care and come to love their clients.
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Family and Professional Caregivers Are More Alike Than Different
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Kim Utecht Prayfrock
Oak Meadows Senior Living in Oakdale, Minnesota
Did you know it can take 2 to 3 weeks to die of dehydration even under hospice? I can't bear to watch that. It's monstrous..so yes I revoked her hospice to get the tube put in, and on discharge she was reinstated on hospice so they provide me with all the tube feedings, pump, tubings, surgical supplies, etc. she has a feeding tube and doing well with it despite the hoopla "evidence-based research" articles tell you (they are all dead set against putting a feeding tube with someone with end-stage Alzheimer's). The surgery only took 10 minutes. Risks are there of course with any surgery, but the truth is it is minimal. No she does NOT attempt to pull out her tube--she is not even aware she has one. So you know I held off doing this until she went into kidney failure due to dehydration since it took all day--one teaspoon at a time--to give her a cup of thickened water. So now her Alzheimer's disease is so progressed she has no idea she has a tube in her, and was not even aware when I put her in the hospital.
The main danger of it getting dislodged is NOT mom..but if I do not keep it in some kind of binder it may get caught in the sheets and while turning/cleaning her accidentally yank it out. So I bought TUBE TOPS at Amazon and use those for "binders" and tuck away the tube so this kind of accident will not happen. Those tube tops are very comfortable for her.
Thanks to a very understanding employer and my best friend I still maintain a job but I can only work a few hours a week. While I work he watches her. and I managed to get my bachelor's degree -- I worked very hard for best grades so I won scholarships so my college degree was free.
Mom is 90 years old. Believe me the last 5 years were very hard on me. That's when she when she went end-stages of Alzheimer's. She had symptomatic Alzheimer's disease for 10 years. I do not believe she will last beyond this year..but hey she reached 90. Mum had her feeding tube put in July 12. She would have died of dehydration without it. Early part of August 2019 she reached her 90th birthday. Despite everything I am thankful I still have my precious mum. I love her more than anything in this world. Let me assure you as for "quality of life" mum is very comfortable and painfree. She is not on any narcotics or psychotropics. Her Alzheimer's disease is so far advanced she does not need any of that..so she really is very peaceful and calm all the time. Leave it all to God.