Old 03-23-2008, 10:03 PM #1
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Default Not sure how to help.....

My husband's uncle was diagnosed with ALS in Nov. of '07. We thought it would be a slow progression, but unfortunately that does not seem to be the case. He was recently fitted with a wheelchair and scooter and the last time I spoke with a family member I was told he now required help feeding himself and no longer answers the phone. His wife does most of the caregiving and there is an adult son who lives at their home and also helps out, mostly in the evenings. We've offered to help out in any way, but our aunt seems hesitant to leave his side and I believe she wants to spend every precious minute left of his life with him. My heart breaks for this beautiful couple. I know she is depressed and needs a break but I feel as though we would be intruding if we gently persuaded her to get out of the house for a few hours while we watched over him & kept him company. I'm also at a loss as to how we can help other than fixing meals for them or offering to relieve her. If she doesn't want to leave the house, I thought about reading to our uncle or reminiscing over old photos, but again, I don't know if it's appropriate. Any suggestions or advice anyone can offer on ways we can help out or ideas to pass the time would be so greatly appreciated.
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Old 03-24-2008, 08:13 AM #2
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Hello. I am sorry to hear about your uncle. This disease wrecks havoc on everyone involved. You are doing the right thing to learn all you can about it, since the more you know the more you will be able to help your relatives. From my perspective, reading and reminiscing with your uncle might prove to be a big help to both. And don’t discount the value of a hot home-cooked meal delivered to their door!

Welcome to our little corner of the internet! I hope we will be able to help. Cindy
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Old 03-24-2008, 12:04 PM #3
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Hi,

How lovely that you want to help! That is a wonderful thing.

I would suggest that you offer everything that you've just mentioned to your aunt. Let her decide what she needs - and her needs might change over time, so it never hurts to offer again down the line even if she says she doesn't need anything now.

My mom just passed away a month ago from ALS, and there's a long list of people who were tremendously helpful...from the ones who cooked meals for her to the folks who visited, to the people who just sent email every now and then. You never know the impact that even a small gesture has.

~Witzz
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Old 03-24-2008, 05:04 PM #4
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Great advice given from the other members already.
We lost a uncle in the family this week, and with everyone, literally hundreds of people, involved you never know who you will make a connection with. Like someone said e-mails, meals, muscic, photo's, movies, all help a great deal.
I think a membership for netflix, or dropping off some good films, is always a great pick me up.
I have a good friend who just writes HI on an e-mail, or drops a treat at my door, she never expects a thank you, or even a reply, she just wants me to know she is thinking of me. It is nothing for my cell-phone to have a message on it from the middle of the night, and she will say, I was thinking of you. Things lke this our priceless.
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Old 03-25-2008, 12:51 PM #5
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As a wife - my husband has ALS, I can certainly understand not wanting to leave his side. I too find that my own anxiety level rises quite high with any extended period away from my husband. I would note that we are in the beginnings of ALS, my husband was diagnosed in February, is progressing at a alarming rate, but regardless is still fairly independent. Despite that, I don't want to be apart from him, and he feels the same, we are lucky to have always been best friends and enjoy each others company.. that sure will come in handy! However, what I can tell you is we both like very much having friends come by with a treat, a home meal. I would suggest you ask her what he is comfortable eating, .. if he has bulbar onset soft foods, lots of gravys, if he is still eating that type of thing, is best. We have had well meaning people bring by meats/chewy foods which my husband can no longer eat. I would also suggest making the visit short/sweet. I only know my husband, but I do know that he tires easily, and likes to nap frequently. Also, as a result of bulbar onset, it is a strain for him to talk,.. so reading a book to him, or enjoying dinner/a rented movie, allows him to enjoy you without straining himself to speak much. I don't leave the house when people stop by, but do get chores done knowing my husband is being visited with loved ones. Hope this helps.
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Old 03-25-2008, 03:27 PM #6
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Wow, I can remember your first post, and to hear how much love and power in your voice is so wonderful. I love your info, I think it is amazing how what is unacceptable becomes acceptable, life has a way of just pushing us through things, your love for your husband has always been apparant. Your post and guidance just proved what I already was aware of. Your spirit is showing through this horrible disease.. Good for you. Great advice.
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Old 03-25-2008, 09:13 PM #7
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Thank you all for your wonderful advice & suggestions. My prayers go out to each of you & your loved one.
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Old 03-25-2008, 10:45 PM #8
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I, too, want to thank everyone for their posts. My father was recently diagnosed in February with ALS. I'm eager to know how an adult child living on the other side of the US can be a source of strength, love, help, and support to my father and mother as they deal with this and cope. Any input is much appreciated!
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Old 03-28-2008, 09:48 PM #9
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Hi, WeidemannB! I grew up in Reston and my inlaws still live there.

I was the adult child several states away from Mom and my sister who was her CALS. Mom went to live with her when she was diagnosed. My sister is single and has a college-aged daughter. It was so hard on them both. When I went to visit every couple of months my sister wouldn't want to leave the house. She did one time, but she didn't really enjoy it. However, she said that just having someone there to share the burden with was a huge help. I could do most things for Mom while she tended to other chores, or just relaxed in the house.

If you live nearby, WrestlingMom, meals are wonderful. Can you help with feedings? My sister lost a lot of weight because she couldn't tolerate feeding Mom mush and then eating herself! Just visiting is a big help, but find out how long is too long. The CALS might want you to really help do some caregiving, or just visit with him for a bit. Or clean her house for her. When there wasn't caregiving for me to do, I cleaned house because my sister was too tired and didn't really care anymore. Her energy was all focused on Mom. I hope this helps.
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Old 03-29-2008, 07:16 PM #10
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I ust thought of anohter way somebody can help from several states away. Sometimes the CAL does nto have time to look things up, like where the local support services are or what the test results mean. A family member with time on the internet can fill this role...just a thought...
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