My husband is a Vietnam Vet. We both have MS, and his has worsened to the point that he's in a power chair. I have to use a Hoyer lift to get him in and out of bed. He uses a transfer board for other transfers. The VA has been great! He has Home-based Primary Care and an aide for 20 hours a week. I am so thankful!
BUT....Things aren't so easy for me. Along with MS, I also have Asthma. It's been pretty bad the last few months. I also don't have health insurance (my husband has Medicare and the VA). Life is a struggle and some days I'm just so incredibly tired!
Family doesn't come around much, so it's basically just the two of us. His kids are local and so is his brother.
My son is paralyzed and lives quite a distance. My daughter and her family live a ways away too. Her youngest has autism. She's mad at me, because I can't travel to see her. So now she won't talk to me. I CAN'T travel! I can't leave my husband and he can't travel with all of his needs.
I don't like to complain. I love my husband and will always take care of him. I am just SO tired!
Can your daughter come visit you? Is her child severely autistic? I’m sorry that she doesn’t seem to understand what your life is like. It may be time for a “come to Jesus” talk with her, maybe? I’m having one with my son this afternoon and had one with my daughter this morning. I guess this was my Day of Reality. 😁.
If you need to “talk”, please message me. I’m “open” 24/7.
I don't recall the details or other general information. But you might want to contact the local/county/state VA office, or call your husband's team leader on Monday and see what support there might be.
If I recall correctly, there was a Friendly Visitor Program as well.
And I believe there were podcasts, or some type of mass participation. I didn't participate in those, however.
Your daughter clearly doesn't understand the situation or is mourning the loss of what she expected life would be like. Can you set up regular video calls (FaceTime or Skype) with her so you can be more a part of their lives without it being extra stress on yours?
Sending lots of hugs to you!
He needs a lot of care at home and it's not easy, or affordable, to find quality help.I am SO thankful for all the VA does for my husband. He disability isn't service connected, but they still help a lot.
It's just hard feeling so alone and not being able to see family. I can't drive long distance, so can't even take off on my own. My daughter has told me that she doesn't want to have a relationship with me and won't even speak to me. She says if I won't drop everything and run to see her, she's done with me. So now I don't get to see my grandsons. My mother is close to my daughter and she lets me know how the boys are doing.
My 90 year old mother plans to driver here (6 hour drive) to spend time with us in October. She realizes that we can't travel and wants to visit us.
We're just doing the best we can....