Hi, everyone. I'm a newbie here, but not to caregiving. I've been a caregiver of one type or another since the age of 11, starting with my younger brothers. I now have 2 grown children, 3 grandchildren, and a wonderful husband who is a real handful. My 18-yr. old son was born with a severe type of Epilepsy and PDD-NOS (pervasive developmental disorder-not otherwise specified) with Autistic tendencies. (what a mouthful) Considering his drs. predictions early on that he would not live past the age of 18, my son is doing terrific. He had brain surgery a year ago, which helped control his drop attacks. His IQ (for whatever THAT's worth) has digressed over the years from the 70s to now 45. Due to seizures, according to our specialists. Ironically, my son is easier to care for than my husband.
My 60-yr. old husband was dx'd with end-stage Cirrhosis over 2 years ago, given 3 months to live. He stopped drinking and took his meds, and made a miraculous recovery, to the point that his internist says there's no need for a liver transplant. Then 11 mos. ago, he suffered a 3cm 'brain bleed' (stroke), after several mini-strokes which had gone undetected previously. He didn't have any permanent physical damage, but does have 'holes' in his memory, especially short-term, and he required speech therapy for a couple of months, which restored his speech almost to normal. He was dx'd 9 yrs. ago with Rheumatoid Arthritis in the knees, which has spread to his ankles. He has had high blood pressure for 20+ yrs., but it's controlled with medication. He's 60 lbs. overweight, which helps with none of these things.
He also suffers from obstructive sleep apnea, (for past 15+ yrs.) and that seems to be the biggest problem of all. It has literally taken over his life. Maybe that's normal for apnea patients, I don't know. He says I "just don't understand", and he may be right. He has a C-Pap, but refuses to use it; hasn't had a sleep study in over 10 yrs., and refuses to consult a dr. or seek any treatment for it at all. Instead, he spends 24 hrs. a day, at least 5 days a week, in bed. When he isn't sleeping non-stop, he's trying to sleep. He constantly feels bad, but also feels guilty for not being more functional as a husband and father, calling himself "worthless", etc. I tell him he's not worthless, that I know he's doing the best that he can, and I love him no matter what. It does no good. When I suggest he try and do something about it, to make himself feel better about himself, he refuses. Instead of trying to help himself, he tries to "make it up to me" by buying me expensive gifts. He knows (I've told him) I'd rather have him, healthy and happy, than jewelry.
He did look into surgery (over 10 yrs. ago), but wasn't satisfied with the statistics, especially when the dr. told him "what do you think we surgeons get paid for?" That was the last time he ever sought any help for the apnea. And his is a severe case - his breathing stops, he starts coughing and sputtering, several times a night. (or day)
He talks more about dying now than he did 2 yrs. ago, when the drs. only gave him a few months. He says he WANTS to die, that he's "just a burden" on me. Even though he's healthier now!
In the past 5 months, we've each buried a parent. His mom died at the age of 91, after a long illness and time at hospice. That was no shock, obviously. My dad died quite suddenly with a heart attack 2 days before Christmas, at the age of 67. I had the sole responsibility of making Dad's funeral arrangements, etc, and I helped my husband with his mom's, as he is an only child. His 'death attitude' has been going on for 2 years, but it seems to be getting worse. I can only think that recent family deaths have contributed to that.
The worst part is that I feel like, in some ways, my husband is already gone.
Because of the sleep apnea (he says, anyway), he doesn't participate in our daily activities at all, and doesn't even come to dinner at the table anymore. Maybe once a week, I can coax him out of the house to a restaurant. He avoids family events as much as possible. I miss him so much. I'm at my wits' end, and don't know what to do to help him, or convince him that he's NOT a burden.