hi Deidre,

I care for my husband at home full time who's also unable to work and is not elderly. He's wonderful and we have 2 great boys. He is unable to get ss or medicare yet, unfortunately. We always find a way to manage somehow. We're a close family, and we have a great supportive family and community.

Hi Deidre,

I also found that most support groups were for caretakers of alzheimer's patients.   I don't take care of my spouse but I take care of my elderly fatherinlaw and his issues are physical decline related (he is 96) basically falling apart.

I'm sorry you haven't found support because I can't even imagine how stressful it is to be working, have your own health issues AND be taking care of your disabled spouse.     Of course one way of looking = at least you get out of the house, but it sounds very stressful.

You will probably have to get help with helping him.    In order to be able to keep working and take care of yourself too.  

Sorry I dont' have many good ideas.   I just wanted to say "hi" and that I hope things will get better for you.

Sincerely,

Chris

I have a special needs son and a husband that is disabled. He has a neurologial disease similar to Multiple Sclerosis. he has not been able to drive for just over 2 years, he uses a 4-wheel walker and wheel chair to get around. he does collect SSDI but we do not qualify for medi-cal.

I am only able to work part time due to my son's needs as his dad really is not able to assist much in his care.

I have a few health issues (chronic back problems being my biggie) but can't afford to hire anyone to help around the house, so I was the one out edging and mowing the laws today...not my back is killing me.

Hi,  I do not know where all of you live but I have a few suggestions that you can look into.  I do not know if they would work or not, but I can understand how hard it is.  I am disabled and have to rely on friends and family and I can see how hard it is on them.

If your loved one has a specific disease or condition that causes them to need alot of care, then look around for non profit organizations that are dedicated to that condition.  Sometimes they will have volunteer organizations that help out.

If you can not afford or you insurance does not cover a home health aid, look into the local nursing and special education schools.  Sometimes students working toward a degree or special education aides looking for extra money will be willing to do respite care for less money than an agency costs.

But the most important thing I can suggest is to find a way to vent your frusteration, stress, anxiety, guilt and anger to someone who is not a friend or family member. 

I am 34 years old and have been disabled since 2005.  I am blessed with a best friend who lives with me and does all of my house work and takes care of the physical stuff that I can not.  It took her a long time to let go of the feeling that she should be able to do it all.  It is not possible for one person to do it all and she felt guilty that she could not.  She also felt guilty that she would occassionally be annoyed that I could do so little, but then she felt that she was a horrible person for feeling that way.  I told her it was no different than feeling angry at a person for dying.  It is a normal stage of the grieving process and she was grieing for the person I used to be.  I finally convinced her that what she was feeling was perfectly normal and that she needed someone to be able to express these feeling to because she felt bad saying them to be.  She knows I would do these things if I could, but that does not change the fact that caring for a disabled person is very stressful.

She is much less stressed now that she has started talking with a counselor.  This did not make the physical tasks any better, but it relived alot of the underlying stress and emotion that goes along with this type of caregiving. 

I hope this helps.

I'm surprised his SS worker hasn't steered you to respite care.  You might check with your local Dept of Human Services or equivalent office.  They should be able to connect you to a website at least.  There are several out there. Which state are you in?  I'm a CNA/ Home health aide, so I can check resources from the other side to point you in right direction.  Where I am, some of the local churches have organized groupsas well.