Family and Caregiver Schizophrenia Discussion Forum

It's getting too hard


#1

I have visited this site off and on for more than a decade but never told my story. I have been married to my husband for 17 years a few of which were before he was diagnosed with paranoid schizophrenia. I work as the director in a homeless shelter so I understand the reality of what happens to those without someone to advocate for them and make sure they are med compliant. I’ve done it for this long so why post now? Because I am tired. You see my husband does not only have a mental health diagnosis but a physical one as well. He has peripheral nueuropathy in his feet and legs which causes him to be in constant pain despite morophine which was caused by uncontrolled blood sugar levels made worse by the rapid weight gain of Zyprexa a long long time ago. He now has muscle wasting disease, difficulty walking, loses balance, schizophrenia is getting worse along with severe mood swings verbal abuse and threats and memory issues (both forgetfulness and false memories)
Caring for someone with schizophrenia or physical disabilities is hard enough but this feels like more than I can handle. Especially while trying to provide a “normal” life for out 14 year old daughter. The false memories and delusions have starts to overlap with his physical health. He most often reports falling when home while having a rough day with his schizophrenia no bruises to show for it, etc. I know he falls sometimes, I’ve seen him loose his balance however, when I’m gone it is always “I fell down the stairs” if I fell down our stairs I would not be walking for days. He has reported to me falling while my daughter sees him only slightly loose his balance. His doctor suggests he get a follow up colonoscopy and he begins telling neighbors and people from church that he was told he has colon cancer. I can no longer trust what he says as true and any discussion or questioning results in a complete freak out.
Recently he told me talked to the doctor and she had told him a bunch of stuff and he flipped when I pointed out that her number had not been dialed or a call received from her. Let me clarify what I mean by “freaks” I mean episode: name calling, threats (that he has cut brake line of my car if I go to leave house, call and report I’m mistreating him,etc) accusations, inability to rationalize with, threatens to leave me, kick me out of house, tries to keep me from leaving house, taking car, etc. Episodes have returned to occurring every weekend (I say returned because 15 years ago that is how things were, only now he’s worse), he is upset he’s home alone during week but is abusive on days I’m off. His doctor said that as the muscle wasting progresses his schizophrenia will become more difficult to control.
Here then lies the problem, I’m stuck. If I were at work I would tell my client they deserve better, that they are only 36 years old with a whole life ahead of them to be lived not simply survived. But…as my daughter said a couple weeks ago, " I know why you stay, he’s like a little bird that can not care for himself" To make matters worse for myself none of my friends even know he has schizophrenia because I want to keep him from being judged, my family knows but we don’t talk about it, I don’t want people looking at him differently than anyone else should he ever actually choose to go along. So I’m alone, hurting,and exhausted and I suppose that is why after this long I have created a new username (I couldn’t remember that long ago) and posted. I want to be “known” and I realize nobody really knows me. I apologize for the length and don’t blame anyone for not reading it all or skimming :wink:


#2

I read all of the post and the story you wrote is known. I’m sorry to hear what you are going through.

I hope your husband’s doctors can help him.

Is it an option to start looking for a residential care facility; since he is worried about his health, maybe he will welcome round the clock care??

I read that you are trying to help and to protect the family you love. Since you feel “alone, hurting, and exhausted” I hope you will extend this love and acceptance to yourself.


#3

I was also thinking about a nursing home or what you call it. His physical health won’t get better and you might have to stay at home to take care of him. Think about YOU. You need time for yourself or you will crash hard.


#4

Hi,

I recently got out of a 13 year marriage (4 years of it she was diagnosed) with someone who is bi-polar schizoaffective. My children were much younger than your daughter though, so the circumstances were a bit different.

One thing that really helped me decide what I would do was to look 5, 10, and 20 years into the future with your spouse. With everything that has gone do you think he will ever change in 5, 10, or 20 years? From what you wrote it sounds like he has been struggling with this for about 14 years, so you should have some history to use to estimate what things will be like.

I realized that I just couldn’t take this sort of thing for the rest of my life. I couldn’t imagine taking another year or 2 let alone 5. I thought about how much emotional damage was being done to the kids, and whether another 5 years would end up breaking them. I thought about my financial situation and the constant doctor bills, er bills, fines for misdeameanors, etc… And I found out that if I continued this relationship it would destroy her, my kids, myself, and possibly extended family as well.

As much as I feared that she would not be able to look after herself, I had to weigh the guilt I would feel in finding out she was living on the streets with the guilt I would feel at never giving my kids and myself a good life.

In the end, she is working and living at her uncle’s house. And every now and then I get a text message from her to remind me why I made the decision I did.

Good luck, I remember the position of having to make a decision, or not wanting to, and it was terrible. But I just wanted to let you know that things can get better, you are never stuck in a situation, you can always make a change.


#5

Be thankful of your love and sympathy for a man who is engrossed in illness. As an outside observer, we all deal with empathy issues; schizophrenia has given me an understanding of the loved ones of anyone in suffering. They suffer along with them, if not more in some cases.


#6

The question is how much of yourself you are going to sacrifice for your husband, and what are the alternatives. Maybe you should be looking into residential care or a nursing home. Also, there are home health aides that might could take some of the burden off you. You might actually help your husband by bringing in professionals to care for him. They’re trained for it. Do you have friends? Maybe one or two nights a week you could get someone to baby sit your husband while you go out with your friends.