Mom with ALS bored - need suggestions

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Starfish

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My mom was diagnosed with ALS in May of this year. She is 68 and retired. She was very active - always on the go, getting much more done in a day than I ever could, but much of it was basic things. She likes/liked to clean, cook for church functions, drove people places who couldn't drive themselves, did typing for volunteer organizations, and shop, shop, and shop, etc. She is getting very depressed due to boredom/nothing to do during the day. Although she is said to be slow progressing, she can't do any of the above things anymore, except for some shopping. She has lost most of the use of one hand and limited mobility in that arm. Her speech is impacted when she is tired. She needs help getting dressed, and can't cook at all -not really sure why - can't open things, stir, cut, etc.

She is not much of a reader or TV or music person. She does see friends occasionally and helps my sister with her kids fairly regularly, but feels "bored" constantly.

Any ideas of what she can do to keep busy? Any help is appreciated.

Thanks
 

freddiesnetty

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You should try to get a communication device. My husband is a quad, trached and vented but uses ERICA to continue to still make music. She could get on the internet, even without the use
of her hands. You use your eyes to navigate. Check out my hubby's website www.FreddieEverett.com. It will tell you about the ERICA and his story of how he has used it to communicate and still continue to make music. Hope that helps.
netty
 

Marjorie R. Wilcox

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suggestions

Maybe she could take a class by mail, internet, or actual.... or just study a subject on her own that interests her. She might tutor a student who needs help with a subject that she excelled in when she was back in school. Maybe she could counsel someone less fortunate than herself.... notivate someone to be their best or change their behavior. (Many young adults need prompting and motivation.) Maybe she could take up a hobby. Since she doesn't have full use of one hand, maybe she could paint (take a painting class) or do jigsaw puzzles that are special and have them glued and framed for gifts. If she could type with one hand, she could write a book... say her lifelong story... start a journal. She could play Scrabble, Solitaire, or other games on the computer. She could put together a cookbook, or a jokebook, or scrapbook for the family. She could plan or design Christmas decorations, or refinish a piece of furniture in an antique finish. She might enjoy a new pet that needs to be groomed and trained.. If she couldn't play an instrument, maybe she could sing. I like to leaf through a hymnal and sing those I know. She might get a part-time job working at Walmart or the local elementary school. She might plant a flowerpot garden if she can't reach the ground..... volunteer at the hospital. Many babies need holding that are in bad shape and abandoned. Old people need visitors. Keep on doing and thinking of what she could do to brighten her day and be of good use. Hope some idea has helped. M
 

lostinlouisville

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Starfish

I loved Marjorie's idea about the babies. I have adopted 3 of my kids from the state and they were drug babies, I had forgot all the great people that held and fed them. As a foster mom you dont get notified right away of a drug baby because of all the paper work, etc. My twins were there 4 weeks before I got the phone call and the volunteers were their greatest resource for bonding. Really great idea.
 

Zaphoon

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Starfish,

I concur! The best cure for boredom, especially for someone battling an illness, is to get your mind off of the illness and out of the doldrums by helping someone else. If your mom can find someone to occassionally drive here to a hospital, nursing home or homeless shelter, she will find people that are in desperate need for a friendly face.

A change of focus from our problems to our neighbors then lending them a hand can be life changing.

Zaphoon
 
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Starfish

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Thank you all so much. I got a lot of good ideas from your posts, and I appreciate the advice that helping others would be good for her - there was some concern in the family that it would be hard for her, but I think she needs to feel useful more than anything.

She did recently go for a "preview" of a communication device that sounds like it must be the ERICA. I will encourage her to continue to the next step with it.

Thanks to all of your help, I have a great list. Now, to work on getting her to give something a go.
 

CindyM

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Hi Starfish. I totally relate to your Mom! Although not diagnosed, I have trouble keeping up physically with my old schedule and my mind has not adjusted to the fact that I can't be "on the go" all the time any more.

I keep busy by volunteering here, I "read" books on tape for my book club, and I try to meditate to help me gain some inner peace. The "go-go" mode was a natural extension of my need to keep busy, thus now I need some inner balance. Also, I took up knitting. Kind of odd since some days it takes all the strength I can manage to manipulate the needles, and odder still when you consider that I used to find it boring and not busy enough! But now it does the trick, especially if I also am watching an old movie on TV. (Another thing I never that patience for so had to train myself to sit through.)

Tell her to keep experimenting. Something will work sooner or later! Cindy
 
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