my husband the caregiver

[dsmode]

my husband is my main caregiver, while he works several friends come in and clean, cook, and tube feeds me and does our laundry. however, he still comes home at lunch to make sure i use the facilities. in the past four months my als has progressed so that i am more disabled. as this disease has progressed, my husband has become more frustrate and d impatient with me. this does not occur all the time but more frequently. can' any of you give thoughts, ideas, advice . i have been feeling like quite a burden. thanks for any input u may have dar from ohio :?

 

[twospeed99]

Get your husband to read Lily's post on this forum titled "love the best medicine" .

 

[Carol Deboer]

Hi Dar,

He is not mad or angry with you, he is angry at als. He is being ccheated right along with you. Frustration is an all time constant companion with als, however, he needs to excersise that emotion better with you. It is a learning curve that not many people are faced with, or that many do not quite know how to deal with. He is afraid, scared, and sad too. That does mean that he should take his feelings out on you. He has to learn to redirect negative feelings into positive ones. He might have to have some counselling to learn that. That might help everyone out. He loves you very much, and does care about your well being. He is just scared. And that is alright. Just remember you did not chose als, it just came along, and everyone has to adapt. Hope you understand that we all human, and some of us cope better than others. Good luck to you all.

Love, Carol

 

[TBear]

... wish I'd said that Carol! Dar, ALS isn't something that you've asked for and Carol is right, not everybody handles the frustration in the same way. You seem to have a good support network of friends who can spell him off when necessary... and that's a good thing! Up here in the cold north there are respite care facilities that can be accessed, where you can stay for a day or two while both of you can decompress. It's not for everybody... and not everybody needs it, but sometimes it's an option to look into.
Carol and I have both lived this and know what both of you are going through. Neither one of you are alone on this.

CHeers

T.

 

[jbird]

Dar from Ohio...Carol is right, he is scared not angry. He just hasn't found the right way to deal with all that he is going through too. As my husband progresses I see that I my fears are progressing and it is so helpful to have someone to talk to. I will keep you guys in my prayers.

Praying for a cure,
jbird

 

[Patsy]

Hi;
I totally understand your situation! My husband is the same and at times even worse. Before I got sick with the ALS, I did everything here but cut the grass. Yes, I married a spoiled mommy's boy with doting sisters. It has been a real reality readjustment for him during the last 7 years. In addition he is an expert at the manipulation/control of the professional caregivers, volunteers, family members and especially me to get exactly what he wants. We have about 15 hours of homemaking services a week and 12 hours a day of nursing services 7 days a week, plus two 8 hours of night shifts per week. The nursing is through the Ontario provincial police insurance that my husband has. I find that we are extremely lucky compared to the other families with ALS.
My husband still works and we have a 10 and 13 year old sons. Despite this our staff, family and volunteers do all the beds, laundry, shopping, cleaning, shovelling snow, dishes, errands, ....etc, everything. He sleeps more hours in total than me with the ALS, per day. And he still complains all the time and makes me and the boys feel like we are asking too much from him but it was the same story before I got sick. He has always been that way and up until this year he had convinced everyone that the boys and I, were way too demanding but they are starting to see the truth about my husband. The situation is getting better for me knowing that everyone the problem is not just me!
I just wish that he would appreciate what great abundant supports we have, rather than complaining all the time that it's never enough! It is difficult to remain positive with his crap. And he keeps telling me that I am the negative one? ?
Anyway sorry for the venting but the ALS can't always change who people are! Sometimes a person's coping skills only worsen under stress and we can't force them to change a person who won't help themselves. We just have to have faith that things will change for the better!
Patsy