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New member
Aug 20, 2007
Loved one DX
British Columbia
last year at this time our family was sailing along and everything was fine - i noticed mom's speech was a bit slurred when i was visiting my family - by december she could barely talk and was having trouble walking - now it is august, a year later and she is unable to talk, move on her own, and is now having trouble swallowing. our family is devastated. although she is being cared for at home right now, it is getting to be too much for my elderly dad and sister to handle. the rest of the family, including myself, live across the country or in my other sister case, on the other side of the world. with each passing week i hear things are progressing quickly and more abilities are being lost. the fact that she has frontal/temperal lobe dimentia -- only 5% of ALS patients have this - makes it very difficult. my mother has always said that if anything happened to her - like this - she would want to be in a nursing home - and not be a burden to her family.
i think we should remember her wishes. of course, we are feeling guilty about this - and it's a very hard decision to make. my dad has power of attorney over her health care and he is afraid to make the decision. my worries are that this stress will kill him before ALS takes my mother.
have any of you out there gone thru this ? any insights into how to deal with it? we don't know what to do.
if anyone has had to face the decision on when and whether to put a loved one in a nursing home or palliative care unit or hospice, please tell me about your experience.
Yes, these are issues very close to my own.. and if you are able, you might want to visit the home and see for yourself how your dad and sisiter are coping. The important thing to remember throughout is your mum safety and welfare is the first issue. Her wishes are also very important and if at all possible, should be honoured. It is tough to make the big decisions. As a caregiver it was gutwrenching to have strangers look after my mum (she is in her own home) we simply could no longer do it ourselves and guarantee her safety and our sanity. Sounds like your dad might need some help.. it is really mentally draining, caring for and watching your loved ones trying to cope.
My Mom has dementia and we had to put her in a nursing home for that reason alone. She ndoes not have MND. On the one hand, she gets good care from loving people and is with her peers. On the other hand, it is hard to be faced with that much dementia every day. She is on a ward with quite a few others with the same condition. My heart goes out ot you. You have a double whammy with both dementia and ALS. Cindy
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