care giving question

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ross

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I take care of my mom who has very progressed PLS in fact I believe it may have progressed to ALS since I have noticed slight breathing trouble she seems to be giving up on some of my ideas to help her comfort .She has very little muscle ability using the remote for the tv has become almost impossible her neck muscles are useless her head actually rests on her chest I have been using a Gate belt straped to the bed around her forehead to help hold her head up to see the TV now she will not let me she says it hurts and I think its more that she just doesnt want it like most of the other things I do

Any sugestions on how to deal with this ?
Also how would I find a local support group for me I can feel that I am battling depression and have been afraid to mention it to mom ,dad ,my wife and kids and I can see its affecting a lot of things around me

Thanks Ross
 

CindyM

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Hi Ross. You are right to seek support since you have so much on your plate right now. Most everyone gets overhwelmed from time to time. You don't say where you are from but you might start with your local ALS chapter. they might know where to go for support and they will certainly know ow to help your Mom with her neck problems. Also, the topic of weak neck muscles has been discussed a few times here with people posting good ideas. Try doing a search from the tab at the top of this screen.

Please write back and tell us how you make out at the ALS chapter. If you don't find what you re looking for there there will surely be more resources for caregivers elewhere. The ALS chapter or clinic is usually the best place to start, though. Cindy
 

ross

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I am in the Cincinnati area and have had very little help over the years not from the lack of searching either. I have found we are so progressed its hard to find peps that know more than us on how to help, we have had braces made, custom wheelchairs, and a lot of home ingenuity, home therapists, nurses its not so much the tools anymore its her will seems to have left her which actually makes it harder to make her comfy.
Every 2 hrs I get her up on a potty chair and then must reposition her back in bed and is becoming more difficult
I have never looked for any support groups nor have I heard of any but I would like to find one My dad and I had a thriving family remodeling business which is almost nonexistant anymore those inbetween hrs get a little hard to take trying to work inbetween them then going to help mom and then back
 

Al

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Ross go to alsa.org and then to the In your community tab and then the drop down menu shows tabs for support. If there is none in your city check the chapters as they sometimes have informal groups or could refer you. And there is always here which isn't a bad place to look for support.
AL.
 

ross

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Thanks Al your always full of great information
I know this is a good place for support I am just not a typer and I think I have a lot to talk/vent about I tend to rethink my thoughts too much when I type and I believe less thought is better
 

Al

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I've sent you a Private Message. AL.
 

sarah

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ross said:
I take care of my mom who has very progressed PLS in fact I believe it may have progressed to ALS since I have noticed slight breathing trouble she seems to be giving up on some of my ideas to help her comfort .She has very little muscle ability using the remote for the tv has become almost impossible her neck muscles are useless her head actually rests on her chest I have been using a Gate belt straped to the bed around her forehead to help hold her head up to see the TV now she will not let me she says it hurts and I think its more that she just doesnt want it like most of the other things I do

Any sugestions on how to deal with this ?
Also how would I find a local support group for me I can feel that I am battling depression and have been afraid to mention it to mom ,dad ,my wife and kids and I can see its affecting a lot of things around me

Thanks Ross
ross-
My husband has als. You said your mom cannot hold her head up, Well, I recommend using a philadelphia cervical collar neck brace. Her doc should be able to write a prescription for it. It has worked wonders for my husband. He can sit up in his recliner a lot longer now. He also, has no neck muscles left, and with the neck brace it is easier for me to transfer him. Hope that helps.
Sarah
 

Lorie

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Loved one DX
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Ross

Does you Mother have a hospital bed, where she can be raised? Does she have insurance that may cover some in home hospice. My brother has Medicare. He is getting it a few hours a day several times a week? I know any relief will help. And what about a transfer belt? I'm with Cindy on the cervical collar. Although weve had two for Timothy, he said it dosen't help. I am checking your suggestion out, Cindy! Thanks


Wanting to help.

Lorie
 

paula B

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Jul 23, 2006
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PALS
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wisconsin
Ross the best advice i can give you is,,being a caregiver is very important and to be the best caregiver you can be you must be equaling concerned with your own well being. After all,,if your stressed out and not feeling well you will not be as good as you can be.
Go talk to someone,,anyone,,,,,even venting to a stranger on the street may help release stress. Take some needed Ross time.
As far as the neck problems i have not yet had to deal with that so i dont have any suggestions.
Good luck
PaulaB
 

Hansell227

Member
Joined
May 2, 2010
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Reason
CALS
Diagnosis
01/2005
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Georgia
I take care of my mom who has very progressed PLS in fact I believe it may have progressed to ALS since I have noticed slight breathing trouble she seems to be giving up on some of my ideas to help her comfort .She has very little muscle ability using the remote for the tv has become almost impossible her neck muscles are useless her head actually rests on her chest I have been using a Gate belt straped to the bed around her forehead to help hold her head up to see the TV now she will not let me she says it hurts and I think its more that she just doesnt want it like most of the other things I do

Any sugestions on how to deal with this ?
Also how would I find a local support group for me I can feel that I am battling depression and have been afraid to mention it to mom ,dad ,my wife and kids and I can see its affecting a lot of things around me

Thanks Ross
Hello. there is a special brace called the headmaster collar.it is made in Canada.It can also be used with a vent if need be.
 

Al

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Joined
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Messages
7,960
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PALS
Diagnosis
10/2003
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On
Hi Hansell227. If you look in the left side of the post you will see it is 3 years old. Good advice but maybe a bit late for them. Welcome to the forums anyway.

AL.
 
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