My husband has a ton of health problems: Charcot-Marie-Tooth, which leaves him in a wheelchair too weak to stand unaided; Psychomotor seizures; he is legally blind due to wet macular degeneration in his left eye, and the cornea in his right eye is being rejected by his body -- he has Fuch's disease, has had cataracts and both corneas replaced -- twice each -- along with retinal tears. He was diagnosed two weeks ago with early heart failure (fluid around his heart and a high heart rate -- he was shocked back into proper heart rhythm) and was in the hospital for five days.
It's all gotten to him. He has been battling fatigue for years and today came out into the living room shaking and saying "This is it. This is it." He is now refusing to take his evening medications -- I'm trying to have him take at least the anti-seizure medication -- and only by some fast-talking has he agreed to see the cardiologist tomorrow. (I told him "Let's just hear what the doctor says. You don't have to take what he prescribes if you don't want to.")
He says he knows the only thing that they will do for him is put him on more drugs and he already takes 16 drugs and supplements on a daily basis. We know some of the drugs he's taking are the cause of his fatigue, but so far we haven't found a solution to that. He's afraid if they add any more drugs, his fatigue will be even more unmanageable than it is now.
And there is nothing I can do. We do have a caregiver who comes in M-F from 9 to 6, and he is a godsend. But when he isn't here, I'm the caregiver, counsellor, cheerleader, coach, and wife. And I am doing this while trying to find a job. I am 59, don't qualify for unemployment, and have been out of work since mid-April. The good news is I am getting interviews, the bad news is I can't focus on them when I'm dealing with him.
We're both introverts, so other than my husband, my only other person to talk to is my counselor and she's unavailable until the 17th. I have no other friends, partly by choice.
I don't know what my husband wants, except out of his pain and fatigue, and I'm afraid of what he may do. I do know he can't get into his full medications -- they're in my office and he can't get into it, I only put out two full days' pills at a time. He's told me "not to do anything stupid" and I've told him as long as he's around, there is no chance of that.
He doesn't want to be put into a facility, and truthfully, I don't think he really needs one yet. When he's "normal", he entertains himself by watching movies and youtube videos. It's just that the last couple of weeks I think have broken his spirit. I'm trying to hang onto hope, but knowing he's broken and there is not one thing I can do to help makes me feel worthless.
I don't know what to do. In the past he's told me "I don't know how you put up with this" and I've replied, "I don't have a choice." I'm stuck, I'm scared, I'm tired -- I'm looking after a super-stubborn man-child who won't do anything unless he wants to or it's his idea. And I can't talk to him right now, because he's in his unreasonable frame of mind.
Thank you for letting me vent.
caircair