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darney2

New member
Joined
Dec 6, 2006
Messages
2
Reason
Loved one DX
Country
US
State
OK
City
Watonga
Hello,
My brother who is 44 years old, moved in with my husband and I in August of 2005. He has ALS. He was diagnosed in July of 2004. It started with a weakness in his right hand and continued from there. When he move in with us he could still walk, some, with a walker, and feed himself. God knew to give him a hard head, since he couldn't use his arms to stop his falls, he would fall and hit his head all of the time. Luckily, he never busted it open. lol Now, he has lost all use of his arms and most use of his legs. He can't turn over in bed. Which means we have to feed him and turn him and lift him out of bed. I had to quit my job to stay at home with him fulltime. It is starting to affect his voice. It is getting very weak and hard to understand him. We are working to get him a communication device to help him with that. He has a PEG tube. We had it put in, in June of this year. His doctor told him that his breathing was getting bad enough that if he didnt' do it within 2 weeks he would not be able to have it done. His volume output sitting up then was 50%, laying down, 30%. It definately has gotten worse since then. He does not want any type of help with it so we deal with it. He hates his feeding tube, but it has helped giving him medicine that he hates the taste of. We don't have to use it to eat yet. He does pretty good there. Thank God! He has had a very hard time accepting what is happening to him. He lives in the past most of the time. Which is hard on him and us. He thinks he can still do things, i.e. walk, stand on his own, etc. He hurts ALOT. He is one of the lucky ones, (unlucky really) who hurts all over. He takes some pretty powerful meds to help with that. We have hospice nurses who come 3 times a week. They are godsends. I don't know what we would do without them. An aide comes 3 times a week to give him baths, etc. It helps me alot there. When we spend to much time together we start taking bites out of each other, figuratively speaking! :evil: We now have it set up with hospice that he goes to the hospital once a month for 5 days. We call it a mini vacation for all of us. He gets a break away from us and us him. My husband is probably one of the greatest guys I know. There are not to many men who would let their wife's brother move in with them, let alone help take care of him. He is more patient with my brother than I am. lol He is wonderful. I really don't know what I would do without him.
I would love to talk to people who have ALS and people who have taken care of someone or are taking care of someone with ALS. I have read lots and lots regarding this awful disease but not enough to answer some of the many questions I have. Hope to hear from some of you soon. :)
 

paula B

Active member
Joined
Jul 23, 2006
Messages
87
Reason
PALS
Country
US
State
wisconsin
City
seymour
Hello,,,welcome to the neighborhood. Ask away,,i am sure your questions will be answered.

Paula
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi darney2. It's nice to hear about family helping out in a crisis. I'm sure your brother appreciates everything you are doing for him. AL.
 

sufernan

Active member
Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
Hello Darney2!
While I was reading your message I was feeling again everything I felt when my husband Daniel was alive. Daniel had ALS and died at age 44. I know what you and your family is going through, do not feel alone in your straggle. This is a very terrible disease and we all deal with it in different ways. Living in the past is just one way of dealing with the present, sometimes I just hoped for a better future with a cure for ALS and that is who I could deal with my present at the time.
Best of wishes to you, your husband and your brother!
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Hi Surney

Welcome to the forums, let me introduce myself, I am my husband's caregiver and if there's any advise I can give you feel free to ask.

You will find wonderful people here (My little house on the prairie) that's how I call it, since it is here were I get comfort, after dealing with this terrible sicknes..

May God bless you and your brother.

Sincerely,

Paty Baja California, Mexico
 

SoniaT

Active member
Joined
Nov 20, 2003
Messages
51
Country
CA
State
British Columbia
City
Vancouver
darney2

Hi,

Welcome!

I was my mother's caregiver for 2 years and I know how hard it is. I'm very lucky like you, my husband accepted my mom into our home with open arms and helped me look after her.

I'm terribly sorry that your brother has been stricken by this disease. I'm relieved to know that you have nurses coming in to help, I had that for mom too.

I noticed that you are from Oklahoma, funny coincidence, my mom lived in Oklahoma for 5 or 6 years many years ago. She often spoke of how nice it is there, she had many fond memories of her time in Oklahoma.

Please take care of yourself too, okay? :)

God bless,

SoniaT
Burnaby, British Columbia, Canada
 

jhviv

Member
Joined
Jan 11, 2007
Messages
11
Reason
PALS
Country
US
State
ny
City
pine plains
I'm in the same boat

my partner is only 40. He was diagnosed a year and a half ago. He's lost a lot of his arm strength, but he seems to be progressing slowly comparatively. but like you're brother, he isn't dealing with what's happening to him. I was patient at first with that, but now he makes no adjustments and expects everything to be like it was. His become incredibly demanding and bitter and mean. I'm seeing a shrink but he refuses. He still tries to do things that he can't do and either ends up hurting himself or making a huge mess and twice the amount of work for me. when this all first began, I'd say to myself that I'd always want him to keep trying to do things, but he just refuses to recognize his limitations. I know i'm going to go out to the store one day and come home to find him on the floor with his head busted open after trying to change a light bulb. His insistence to keep trying to do things he can't is almost manic.

I don't know. I guess I have nothing to offer other than that I'm frustrated, too and feel really beat down. you're not alone.
 

donnah

Active member
Joined
Aug 18, 2006
Messages
54
Reason
CALS
Country
US
State
New Jersey
City
Barnegat
Hello Brothers Caregiver

My husband just passed away last month from this horrific thing we all call ALS. Well here goes ..... cherish this time, never tell him he cant do something keep encouraging him to think he can. Believe in him even though it looks impossible. When him gives up its all over with. Let your brother challenge himself. do not stop him, just catch him when he falls. find other ways for him to achieve what he is trying to do, belive in him. Belive me he hates the fact he cant do something..... he dose not need to be reminded of it. Ben hated his feeding tube also. remember it a reminder of ALS even on a great day. Ben always felt bad when he woke me up in the middle of the night to turn him. 2-3times a night. I wish and long to turn him now I still wake up that many times a night. I worked full time and Ben never wanted anyone to stay at home with him full time. the time he spent alone no matter how lonely or how uncomfortable he became at least I think it gave him some sort of independence. I could not let him go to hospice he belonged home no matter how hard it got. Just be there its hard but........... it was harder on him. Be understanding, because there will be a day........... Just have no regrets...... Take a deep breath.......... Smile........... cherish this time .......Enjoy dont let it get the best of you.

Always missng Ben, and remember dance one more dance


Donna
New Jersey
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello all. I see both sides of this issue. My Mom is in the final stages of Alzheimer’s and I am about to get a DX for what is most likely ALS. My Mom is in a nursing home but I am the only family member who attends to her. I am with her almost daily, to help feed her a meal, do all the stuff that a power of attorney and health care proxy needs to do, be her voice for those who care for her.

The last few weeks it has been harder for me to help my Mom. Driving wears me out. I am still working full time... you can see how it must be. But my theory is we only get one chance at this. I want to do something for my Mom while she is still with us.

At the same time, I am no use to any of us if I get completely worn out. If I have had a really long day, I am weaker, feel vulnerable, and have a hard time keeping my disposition. The trick is to find a balance for both of us. Sure, things could be different: my sisters could help Mom, my husband could learn to cook, my employer could stop giving me new projects. But I cannot make these things happen. And wishing for it only leaves me resentful.

Today our local newspaper carried a story about a doctor who helps people face end-of-life issues. Each morning he closes his staff meeting with this advice, "go spread some joy." And that is what I try to do for both myself and Mom. We both need and deserve all the joy we can get.

I wish you the best as you try to strike the balance between caring for yourselves and caring for your PALs. Cindy
 
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