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Bonnie Scahill

New member
Aug 23, 2006
Loved one DX
My Mom has ALS. She lives with us. She has progressed very rapidly. She can't communicate and is totally immobile. We have caregivers, but they are pricey and don't seem to stay long. I haven't had much luck with agencies. Could anyone give me info on 24 hour live-in care and/or people you have had luck with? I live in a suburb of Chicago (Western suburb, Lombard). Thanks
It pays to know nurses and/or doctors. We don't have 24 hour help for dad, but we do have daily nightime care so my mom can get some sleep. The nurses (we have 4 of them) we have that are helping were people who knew a friend of a friend. Before dad came home from the hospital, we contacted all of the nurses that we could think of that knew of us. In order for them to work for us, and have insurance cover it, we had to have them go through an agency. We had bad luck with the people the agency sent. The best luck we had were from the nurses who knew about us previously. My advice would be to ask family and friends if they know of anyone who is a nurse or CNA that would be willing to help out a little. Call everyone. Good luck.
You also might try the social services dept of your local hospital. Or sometimes you can put up notices at the hospitals about needing occasional care (ask social services about this too). Obvisously, it is difficult to come up with a 24 hour live in person (not many people want to be that tied down to caregiving, especially if it is a "job"). Think more in terms of shifts .
You're a saint! My brother was living with me, the last time he fell down and I didn't know until an hour later, I made the decision that he need more care than I could give. I didn't have the resources or proper equipement. I talked to him and he agreed that he was scared and wanted to go to the hospital. I called an ambulance. That was 3 months ago. He is now in a long term care facility, he feels better because he does not feel like he is a burden, I feel better because alone, I could not give him the care he needed, even though I had help coming in once a week. Doctors were able to provide a medication cocktail that made him more confortable. He seems at peace now, and I am always bringing him 'goodies' and homemade meals as best I can, which he enjoys (when he is not nauseous). It was the best thing to do for both of us. I felt tremendous guild for a while, but with the support of family and friends, they helped me realize this was best.

The worst thing you can do is burn yourself out. Take time to understand the needs and if you cannot accomodate - it's o.k. That is why long term care facilities exist - you just have to do some homework to ensure the best possible care - and visit as much as possible. Remember, you also have an obligation to take care of yourself and your family.

All the best.
Caregiver Turnover

My sister's husband has ALS, and the caregiver turnover rate is high. Does anyone else experience this problem. My sister does not go to a Caregiver Support Group even though I have encouraged her....she says she just doesn't have the time...with working full time and trying to take care of her husband. She only has help twice a week at night and he can't talk, feed himself and needs help getting in and out of bed. He does not sleep at night. Are these experiences others are having. Please share any insight and guidance. Thanks so much.:) :)
Hi, Bonnie,
Did your mother start with bulbar symptoms? How long has she had it? My husband was just diagnosed this month and seems to be moving fast, too. Starting with slurring 1 night a week in April and May and now is already on Bipap and suction machine and had a feeding tube put in this week. The choking and all is scary. Can you still do the Heimlich on them when they have a feeding tube? I have heard it is hard to get good reliable help.
You should be able to do the heimlich with a feeding tube in place - I'm assuming it is inserted into the abdomen and not down his nose (the nose thing can be very irritating and I wouldn't think that anyone would chose that route for long term care).

If someone if choking, the feeding tube is the least of your worries - do what you have to do and worry about the tube later.
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