So on Sunday, I was able to do a little exercise at my health club and went with a friend for coffee afterwards. Wouldn't you know it but I got a phone call from my husband who was visiting my brother. He was slightly panicked because my brother had wet his bed and he didn't know what to do about it because my brother lives in an assisted living facility that only makes the beds on Monday-Friday. So I told him to check in with the front desk and I was just so happy that this didn't happen on my shift. But it still stressed me out.
My brother is losing his muscular controls and one of the things that is going is his ability to hold urine. Another problem is that he now walks so slowly he can't get to the bathroom on time. So he tries to refrain from drinking fluids, which dehydrates and pushes him into afibrillation and the condition is life-threatening. The family and his case manager is trying to pressure him to wear diapers so that he can keep his fluid intake up but he is not cooperating. It's very frustrating. He will tell you he will drink and that he will walk (even if it's inside the buildindg) but he won't do it unless you stand over him. I have decided I can't go over there everyday and work and take care of my own family so I don't know what his future is going to look like. I have pointed out to him that if he lands in a nursing home because he either can't control his urine or he can't walk, that the nursing home will make him wear diapers anyhow. So far, I am not getting cooperation from him.
Sometimes, I think a nursing home would make my life easier, but then I remember that they will take very bad care of him unless you show up a lot and let them know you are watching. And let's not forget about the 6 months when his COBRA private insurance runs out (hard to believe he was working until last year) and medicare doesn't start. He has a wierd insurance thing right now where he has private insurance and medicaid, not medicare.
Ok, I have gotten some of the main issues off my chest. Maybe now I can start lightening up.
Do people know about the list serve that exists for siblings of people with developmental disabilities? I have been "stalking" this list serve for several years, and finally have started meeting a few people in real life. It's really quite wonderful to meet people where you don't have to explain anything, people "get it". And you don't even have to spend all your time talking about your sib(s)!
Hi Mardi, I can well appreciate what you are going through and it is so hard. Would your brother respond to setting up a schedule where he went to the bathroom at a regular interval, whether he needed to or not, and similarly if he would drink a certain amount with some regularity. Is he a candidate for Physical Therapy? perhaps if he got exercise for his legs, they would be stronger rather than just allowing his muscles to atrophy.
ReplyDeleteI am sure you thought of these things but just so I don't feel so helpless I thought I would share them.
mjr