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ALRWA
Casual Contributor

So isolated

Not sure where to start. Care for my husband of 25+ years who has had chronic illness from before we met. A lifetime of that and people deserting and people not caring and mistreatment of ego's in the medical field has left him with emotional issues which now effect all aspects of his life (on top of the physicall illness).
This means he is near totally isolated, rarely leaves home and only speaks to the kids and I with one friend who occasionally calls him. Plus we have been isolated at home for 6 months with COVID. (I mean not leaving home at all, not just to the shops or school. All at home, all day, every day).
His physical illness takes it's toll and he can't help much at home, can't work. But I think the emotional issues are the bigger issue at the moment. He's having PTSD flashbacks, nightmares whenever he's asleep, depressed and so on. BUT he refuses to seek any kind of help. He is a good communicator so he speaks to me a lot about it all. Has done for the full 25 years. He's getting worse.
We've tried to get help a few times over the years and it's usually ended badly. Dr's laughing at him for suggesting CPTSD, being told to leave because his appointment has 'taken too long' - all the types of things that someone with ME doesn't bounce back from well. If I suggest he speaks to someone, he gets really upset and says I don't support him. Says he did that when I "made" him and it made things worse.
But I need him to get help. I can't be it all. I work, raise the kids, cook, clean, organise everything (he can't speak to anyone, not to arrange a plumber or electrician or the shop about buying something... nothing).

 

I can't be his sole councellor too. 

Trying to apply for NDIS but dealing with Dr's triggers him so I have to do it. Would be easier if he'd see a psych for that but wont so will have to apply just for the physical illness.

3 REPLIES 3

Re: So isolated

Hi ALRWA,

Whilst waiting for your NDIS, you can approach various service providers and get a support worker (paid by you until NDIS approval) they then maybe able to take some of the pressure off you. Maybe even take your husband on a little outing , even become another sounding block. You just need to look up aged care/disability service providers in your local area. 

Re: So isolated

@ALRWA I've been back and read your post a number of times in the last few days and I really wish I had some words of wisdom or advice that would help. I can hear your frustration. All I can say is  you're not alone.

 

I have had similar issues, but not all at the same time with the same man... your life makes mine seem easy.

 

1. Denial. My husband of 24 years came from a family with a history of depression and bipolar. He'd been up and down for the first 15 years, but then his dad died and he sunk into a deep depression. He disengaged with all of us. He went to work, came home, and sat on the back veranda gazing at the view the rest of the time. He became very clingy and panicked when I went out. I spent the last 5 years of the marriage begging him to ask for help. He put it all back on me because I'd been treated for post natal depression 12 years earlier. He said I was the one with the problems.

 

I gave him 12 months' notice to get help or I was leaving. 2 years after that, as my last effort to save him and our marriage I left. I told  him to get help, get himself back to his old self and we'd pick up the pieces. 3 months later he was in therapy and got a new girlfriend. They are still together.

 

I lost quite a few friends but I still had support of my extended family. Our kids hated me, but dad never took them both for a weekend EVER. My daugther saw him because she pushed and nagged. My son was ignored and just got angrier and angrier with me.

 

2. Physical Illness. I got a new boyfriend too, 14 years older than me with a pre-existing medical condition I knew nothing about. We didn't live together because I was now putting 2 kids through high school on my own and introducing a new man into the mix wasn't going to work. By the time my kids left home he was on the age pension so we didn't marry or live together because he would lose it, and he didn't want to be financially dependant on me.

 

We built a house together for him to retire to. Physically built it on the weekends. It took us 3 years. Devoting every weekend to building his house took it's toll on us both in terms of keeping up friendships. Then he got very, very sick. I was not his wife so the doctors weren't keeping me in the loop and he was a lot sicker that he'd led me to believe once he couldn't hide his symptoms any more. The illess also affected his mind in the end.

 

Making sure he was fed and medicated was then my full time job outside of my full time job. I would travel down to him every weekend and prepare his meals and pills for the week, call him 4 times a day to remind him to eat and take them. I did his shopping and paid his bills. I was only at my place to sleep on weeknights after work.

 

When his daughters finally let me attend an appointment I was told he was ready for palliative care - that was the first time I'd been told it was killing him, he had kept saying he was going to improve with each new medication. 6 weeks later he was dead. I spent that the next 4 weeks caring for him full time, and only put him into hospital (ended up being for 2 weeks) when I couldn't physically manage to wash and toilet him any more.

 

His children were horrible to me after that - but that's irrelvant now, that was 3 years ago and life keeps moving on. I still had my family.

 

3. Mental Illness Two years ago I met someone else. How could I be so lucky as to find three great loves in a lifetime? I already knew this guy was on disability for a physical illness, I didn't know he was bipolar until I was already hooked. 

 

For two years I've charted his moods (again, not living together because  he had 2 boys in high school), recognised the patterns, the triggers and what works to help keep him stable. When  he does have an episode they are mixed episodes, where he is manic and depressed at the same time so he is irritable and angry and sometimes violent. It lasts for a couple of days and cycles around about every 4 to 6 weeks.

 

My family have dropped me because I stayed with him after the first few manic episodes (one was actually quite bad, but he'd had a concussion which made it way worse).

 

Now he has been stuck in that state since June. All the time. He and his children moved in with me at the start of our first lockdown in March when I worked from home and home schooled the teens at the same time for three months. The boys are now back 50% with mum, but he hasn't been back to his place at all. Since tele health appointments he has only left the house to fly his model aeroplanes every second Sunday morning. His prescribing psychiatrist tells him every 3 weeks to see the psychologist again and he doesn't. He has referrals to specialists about a few medical issues that are weighing  him down and getting them solved would improve his mood... but he doesn't go. He talks at me incessantly when I am home (still working 40 hours a week btw) and every weekend I'm cooking and cleaning the whole time for hungry boys in their late teens.

 

And he is losing his temper, very badly, at the drop of a hat, multiple times a day. If I try to talk to him about it he gets suicidal.

 

So yeah, I cannot immagine the horror of all three of these things happening at once. What I'm doing now is bad enough. At least my kids are adults (although they live a long way away and that sucks) and at least the 2 boys I try to shield from the worst of him aren't actually mine.. and I've given the 17 yo a old car I had so that they can leave if they have to.

 

I have no wisdom and no advice. But I have hugs.

Re: So isolated

Thank you . I just logged in and thought I'd have no replies so having one that shows that I'm not alone has given me some peace. 

 

 SJT63 that is one long hard slog you've had for love! You definitely have grit! Huges received and returned. Smiley Happy

 

Today I had the phone call with the GP about filling out the NDIS medical application. It's hard to quantify hubby's medical condition. The "condition" isn't considered a disability but it's the overall effects of 40 yeas of illness on his body. He didn't want to include any mental health issues on the form and I made the mistake of involving him in the phone call and he's now angry at me. Apparently I shouldn't have and shouldn't even apply unless he doesn't have to participate AT ALL. I understand it's hard fo rhim but think it's unreasonable that he wants me to be 100% responsible. 

 

I wish he'd see someone. 

 

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