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brotherlylove

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Sep 17, 2007
Messages
4
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Loved one DX
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Country
US
State
KY
City
irvington
My brother has ALS. The only strength he has is in his right hand and it gets weaker every week. He has had ALS for about 6 months. He's single and I have been providing care for him. He has a living will, has requested that no breathing machine and no feeding tube be used. I'm worn to a frazzle. He calls me names, belittles me and is a nasty hateful person. Months ago when I decided to help out he was nice ,yet he had always had an abusive side. A couple of weeks ago I got fed up with it and laid out ground rule. These rules were after I walked out, vowing not to be involved with this hellish disease multiplied by vulgarity. He also said "he wishes he were dead". I spend 12 hours on short days taking care of him. I commute 36 miles one-way.

Things were calm for about 2 weeks now the abuse starts again. He should be grateful as I help him bathe, toilet, wait on him hand and foot. He pulled this crap with me again last night, so I walked out of his life. My oldest brother who lives several hundred mile from here is geographically disassociated himself and his family from our brother. There is another person who helps out.....who is put on a pedestal. I rearrainged my whole life! I ONLY try to help my brother in his time of need. Yet he gives me the business.

I'm tired of people saying "I knowing how I feel". They don't know diddley squat! My brother seems to think ALS ONLY affects those with the disease. I guess ALS is a ticket for caregivers to endure abuse, hardships, and whatever else they want to dish out to family members.

My brother requires full-time care as he has to be assisted getting out of bed, The daily routine ...and then back into bed at night. I feel trapped,guilty,abused, sad,
isolated........... enough said.

I haven't emailed or talked with anyone except my wife. Why do I have to be the one to care for him? It sounds selfish yes, I have reached my wits end.

:cry:
 

CindyM

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New England
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Sad to say, you are not the only one with this problem! One family actually had to put their PAL in a nursing home due to verbal abuse. You said your brother has a history of verbal abuse and this just might be his way of dealing with the disease- if that is so you have to make your own choices for your own peace of mind. But on occasion some ALS patients develop dementia as well. And on very rare occasions dementia is not age related. If he has dementia along with ALS, his doctors can recommend meds that should make him easier to deal with. If this is just the way he is, he will have to deal with the fact that driving loved ones away when you most depend upon them is counter-productive, to say the least!

Please write back and let us know how this situation develops. BTW, when my Mom was first DX's with dementia I said if they didn't find something to calm her down, they would need to find something to calm me down so I would be able to cope. We were fortunate, but it is a thought...Cindy
 

brotherlylove

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Joined
Sep 17, 2007
Messages
4
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
KY
City
irvington
He doesn't have dementia unless it was pre-existing. I'm not veiling myself either. I suspect when he goes into a care facility they will abuse him. He's told me he fears that.
:(

If I could just get help with the caregiving. I'm beat-up!
Is anyone familiar with Hospice Vista?
They are coming out Friday. this will be the 2nd visit. the 1st visit he didn't qualify.
I'm wondering if they will eventually ease the burden?
I go to his home 6 days a week. Try juggling that with work........
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Dear Brotherlylove,

I do not know about Hospice Vista, but I know about Hospice in the general sense. What is the Vista about. I know of the program Vista which is a volunteer organization, like Peace Corp in the US. Are they combined?

Just a suggestion. Is there a way for you to sit with the other person who helps with your brother and lay down the guide lines then both of you consult/confront your brother so he cannot play the two of you against each other? Cover all aspects of who does what when and what responses from him are no longer acceptable under any circumstances. He will not like it but you have to take care of yourself and set your own limits. It is a very tough situation and I hope you can find peace with it. Sincerely, Peg
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Vista

Sorry to hear how it is going for you. I used Vista twice last year for family members who were dying and they were great. I am in So CA. They were on time, kind, caring and really on the ball. The use was in two different facilities over a few months. I also used them 10 years ago and they were just as good then. Hopefully they will be able to ease your burden.

Sharonca
 

vmd

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brotherlylove:

I should add that I admire your dedication to your brother, even under trying circumstances. You may not feel you are doing anything heroic, but you are. I suspect, deep down, your brother knows what you are sacrificing.
 

siuska

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Messages
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Learn about ALS
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michigan
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detroit
Forgive me, i know you are having a rough time...i took care of an angry person once, and i ended up at a counselor's office because of the abuse...i think your brother is in the angry stage of the grief process and probably would benefit from some counseling as i know you would too. You are both dealing with one of the biggest challenges humans can face. Perhaps you can find a way for days off, with some other care-giver.
in my case i got a nurse to come on the weekends so i could take off...
S
 

brotherlylove

New member
Joined
Sep 17, 2007
Messages
4
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
KY
City
irvington
Thanks for all the advise and experiences.

BL
 
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