keptfreeinhim
Member
- Joined
- Aug 6, 2007
- Messages
- 13
- Reason
- PALS
- Country
- US
- State
- Michigan
- City
- Midwest
Hello,
First posting. My husband began symptoms of dementia age 45. He is now 59 and has probable frontal temporal dementia. His father and uncle both had a similar dementia. One month ago husband was also diagnosed with ALS, probably Bulbar form. He has had speech problems for almost a year, choking and swallowing difficulties for six months, left hand and arm problems for four months and now his right arm and hand are affected too. He has fasciculations in the upper body area. Life expectancy is one to two years. One disease was hard enough to deal with. Now this. With the dementia he is probably at a developmental age of five or six years. I am wondering how I can make all these adjustments needed with ALS when he probably is not going to understand the need for them. He is eating now with foam over his utensils and has to be reminded to take smaller bites and chew carefully. Feeding tubes and all the other items needed as this disease progresses? I am wondering ethically what to do. Am I doing more harm in putting in a feeding tube when that time comes or not? I am prolonging the inevitable? He is so dependent upon me. He would not understand a hospitalization. I would need to be with him 24 hours a day for his security. I know this is rambling, but not taking this path before, I am not even sure what questions to ask. Is there anyone else on this forum who has had both diseases? Thanks for any advice you can give.
Kept Free in Him who holds the world in His hands
First posting. My husband began symptoms of dementia age 45. He is now 59 and has probable frontal temporal dementia. His father and uncle both had a similar dementia. One month ago husband was also diagnosed with ALS, probably Bulbar form. He has had speech problems for almost a year, choking and swallowing difficulties for six months, left hand and arm problems for four months and now his right arm and hand are affected too. He has fasciculations in the upper body area. Life expectancy is one to two years. One disease was hard enough to deal with. Now this. With the dementia he is probably at a developmental age of five or six years. I am wondering how I can make all these adjustments needed with ALS when he probably is not going to understand the need for them. He is eating now with foam over his utensils and has to be reminded to take smaller bites and chew carefully. Feeding tubes and all the other items needed as this disease progresses? I am wondering ethically what to do. Am I doing more harm in putting in a feeding tube when that time comes or not? I am prolonging the inevitable? He is so dependent upon me. He would not understand a hospitalization. I would need to be with him 24 hours a day for his security. I know this is rambling, but not taking this path before, I am not even sure what questions to ask. Is there anyone else on this forum who has had both diseases? Thanks for any advice you can give.
Kept Free in Him who holds the world in His hands