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jeanlaine

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Sep 25, 2006
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Reason
PALS
Country
CA
State
AB
City
Calgary
My ex- husband was diagnoised with bulbars ALs two years ago. since then our children ages 23, 19 and twins 16 have been his caregivers. it has gotton to the point where they fed him thru a tube. he has no upper body control. Last week he fell and layed on the floor for 5 hours til one of the 16year olds returned home to help him up. home care has not been a very good option. How can I help my children see it is ok to place their dad into a home. the stress on them is beginning to show. Not only that I know that he would recieve better care. It has been a very hard two years trying to be very supportive to them and their dad. Just so you know we took him on holidays with us so we could all spend some time together. I know now though this is getting to be too much for them to handle. He is also afraid of going into a home. Help !
 

Pearl

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Joined
Aug 20, 2006
Messages
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Reason
Friend was DX
Country
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State
Georgia
City
Atlanta
It's very hard for your children to care for their dad - 23 is still awfully young to have to deal with this horriable illness all on their own. He clearly needs 24 supervision - checking in just isn't enough anymore and it will only become "more so".

Deciding how to proceed should be a group discussion - including your children, any other caregivers and your exhusband. Perhaps with the aid of a social worker to discuss options. I'm guessing that you stepping in as the exwife to provide his care with the children is not one of those options....
 

lunarruna

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Messages
145
Reason
CALS
Country
US
State
xx
City
xxxx
Jean,
What a stressful time for you all. Sounds like your husband and kids are in need of a social worker visit, or visit from ALSA advocate or health care person who is equipped to educate them on their options. This is a complicated disease. Nursing homes are one option, but there is also the option of having full-time live-in care at home. Medicare/insurances in the US provides for great home health/hospice benefits with nurses and aides and therapists coming to the home. There are many possible paths---but they need to evaulate what is best for them, with some help from someone who understands the options. Seems the best way you can help is to hook them up with someone in the know who can advise them....Good Luck, Beth (CALS to husband Shannon, diagnoseded at age 40, 8/2004)
 

jeanlaine

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Sep 25, 2006
Messages
3
Reason
PALS
Country
CA
State
AB
City
Calgary
thank you to all who responded . We all know that he could have other options of people to come onto the home to look after him however he is refusing. I think part of the porblem is he is afraid of loosing his children, that if someone else comes into care for him, then they don't have to be there. I am meeting with them all , first the children then together with their dad this weekend wish me well. I don't not wish him harm andwant to help in any way however I am seeing the kids need to go back to being some what kids and have someone else as caregivers.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Jean. Sounds like you are on the right track with meeting with the kids first. You will have to impress on them the fact that they will not be abandoning their dad. They will feel this way. Talking to him make sure he realizes the dangers of falling when there is no one to help him. He could have lain there and bled to death if he had hit his head on something. That would not be nice for the kids to come home to. I do not relish the thought of going in a home either but if my family was unable to look after me it would be the only smart option. Providing that you still want to live. He has to make some hard choices. I hope he can deal with it. Let us know how you make out. AL.
 

jeanlaine

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Joined
Sep 25, 2006
Messages
3
Reason
PALS
Country
CA
State
AB
City
Calgary
No fight left

just to let all of you know I never got a chance to have the meeting with the kids, we had to reschedule our meeting from the weekend to Monday Oct 2 and Mel passed away sunday Oct 1 at home in the afternoon. He had been fighting a chest infection but refused to let the girls take him to the hospital. I will be praying for all of you out there fighting this hideous disease.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I am so sorry to hear of your loss. There is an old expression that God takes care of fools and little children. Maybe he was looking after your children. Take care and if you or the children need support you can find it here. AL.
 

jo aust

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Joined
Oct 16, 2006
Messages
11
Reason
Loved one DX
Country
AU
State
Queensland
City
Townsville
Thinking of you all. Jo
 
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