Family and Caregiver Schizophrenia Discussion Forum

It's been a long road


#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’ve done it for this long so why post now? Because I am tired’’

That’s A LOT for just one person. Of course you’re tired: you’re human.
What are you doing to take care of yourself?

Keep writing if you feel like it. We’re listening. Don’t keep it inside. It’s not good for your health.


#3

Yes, and you should be as kind to yourself as you are to your clients.

Maybe there’s a way for you to at least get some time off – and away – in order to recoup a bit. If one is needed, maybe a nurse could be hired to assist with his meds and/or other care for a few days (or more)?


#4

I strongly agree with @Erratica . You need some sort of break to relax and have time for you. I know you won’t want to do this but maybe put him in a hospital somehow? When I was in one (it was just for a few days and I didn’t even stay till the weekend) but I was told family could come visit on the weekend. You might be able to love him better that way. I know that might seem to make no sense but hear me out.

You won’t feel like you’re fraying at the seams. I’m not saying the hospital will magically make him better but how much worse can he get before he has to be hospitalized anyways?

He can get better care for both his mind and body. I’m in no way calling you a bad care giver but doctors might have a way to deal with him having false memories.

It might show your daughter you can put your foot down while still caring. I don’t think it’s good for her to see him treat you like this. Yes, he is sick but don’t let her think that is a valid excuse. If he is sick enough to treat you like that he’s sick enough to be in the hospital.

You’ll be able to love him better, if you’re anything like me. (I’m diagnosed so this might have something to do with it). I need time alone. I can’t be with my fiancee © non stop for even three days. I need somewhere to be quiet and on my own. That doesn’t mean I don’t think about him while I’m alone. I write him little poems and send him funny pictures. Your husband might be too far gone to appreciate a poem but you could try. Or maybe bring him treats if they will let you.

You’ll be consistent. You can’t tell your clients to do things that you aren’t willing to do yourself. Hospitalization does not mean abandonment as anyone on here can tell you. They let us call home every night while I was in there not to mention the weekend visits.

Out of sight does not mean out of mind or out of love.


#5

**Yep-know that feeling.
Do you belong to any support groups?
Not sharing this with anyone has put you in a corner. You cant do this alone. Get the family updated and on board so you dont have to do this all by yourself.
I have been doing this for many more years alone, and that has caused a lot of mistakes on my part. My sisters have been supporting me the last 2 or 3 years, and it has made all the difference in the world!
Please take care of yourself!
**