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brooksea

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Sep 27, 2006
Messages
5,226
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Other
Country
HM
Becca,

I think you need to have a serious conversation with his neuro or GP. Surely they could come up with a way that home care or hospice, as has been suggested, could come in and provide you with relief. What will happen if you end up in the hospital? This needs to pointed out to his physician, as well as his family.

I don't know if this would be practical for your situation, but I used to talk to a cALS, whose husband was in bad shape. She made up a nice little sign to put on the front door, to tell visitors that it was not a good time to visit. Something to the effect that visitors are welcome, but please call first, as now is not a good time. Their family and friends respected that.
 

Pat Paine

Distinguished member
Joined
Aug 20, 2010
Messages
186
Reason
PALS
Diagnosis
03/2010
Country
US
State
California
City
Benicia
Dear Becca,
The med center where you and/or Jason are seen should have a Social Service dept who can advocate for you and Jason, they could advise you on services and provide you some emotional help . Please know, that with this forum you are not alone. Can you feel my big hug?
Pat
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,297
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
City
halifax
so sorry for you , i hope my daughter in law don't feel this way about me ... i dont think she does she is depending on us and we will be there my son is not as far along as your husband but we will be there to help and yes we may run in each others way in the future and we will work them out , i only visit once a week so i dont cut into thier time i know they need thier time to live as normal as possiable and at the same time i want to be around him more
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,297
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
City
halifax
so sorry for you , i hope my daughter in law don't feel this way about me ... i don't think she does she is depending on us and we will be there my son is not as far along as your husband but we will be there to help and yes we may run in each others way in the future and we will work them out , i only visit once a week so i don't cut into their time i know they need their time to live as normal as possible and at the same time i want to be around him more

i did not get to finish this as they happen to call as i was typing , my son wife and my daughter were all together , and she knew something was wrong in my voice so i told them about your post and i was crying , i was assured my sons wife would not feel this way ever ... i was crying for that reason and feeling so bad for you , but i can tell you that one knows what a caregiver job requires till you have done it as i did for my mom from a stroke ... of course there were things said and always will be for any caregiver like we all drive different ways and we get their safely but there is always someone who picks on the way we drive ..... so you have my support your doing a tough job and next time you hear a rumor call them out on it and say why don't you get over here and help with the care and i have a schedule to give you for that help and when they say they will help with the food tell them if you can do it now it will give me more quality time with him and that is what we need... wishing you the best
 

shelli458

Member
Joined
Nov 9, 2006
Messages
18
Reason
Lost a loved one
Country
US
State
Ca.
City
Ventura
My mother died
in 2004 after 1 and half years of pure unadulterated hell. I thought I would accept it and forget but every day I am haunted! I have nightmares, depression and fight to find this world a happy place.I saw a therapist,tried meds etc. but I feel like it's PTS(post traumatic stress) and I am scared all the time.The urge to drink or drug is powerful and I spent 2006 in jail for 4 months for DUI's.NOw? I no longer am kamakaze like but struggle.I will help anyone anywhere with support if you need to talk,maybe if I had had someone I wouldn't have fallen apart so much, or felt so alone!NO ONE understands like a family member whose gone through it. helping is the only way I feel some peace and my mom would have wanted that.:-x
 
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