I know others have it worse, but...

[pgsc]

Things were relatively ok until Dec 2019. Lovely (Thai) wife, married 16 years at that point, absoloutly NO fights in that time (yes, I AM proud of that).

Then things went rapidly south. Dementia hit her like a tonne of bricks. By the end of March, she could not be left alone. Early May, she went into hospital where she stayed for 12 weeks. From there to a nursing home, as I could not work and look after her at the same time. The day she was moved, she physically assaulted me in the hospital. She was down to about 36kg & I am over 100kg. It took 4 days for the bruises to not be as noticeable. The tranquilisers she was given then should have worked in 30 minutes on me. It took over 90 minutes on her. She was one angry lass.

The nursing home is 'ok'. Few interesting ideas like trying to charge $120+/month for internet to someone who can't use it. Charging over double street price for medication... things I would not succumb to.

I have seen her once since the end of July. That is not my choice. Part of it is due to the constant COVID lockdowns (Thanks, President Xi!) part because she does not believe she is married.

Some days I am OK. Some days it takes nothing at all to set me off. A lot of days I am a crying mess. Like now. I believe I have alienated a lot of people due to this. I'm reluctant to say much more than "I'm OK" to anyone now. I think my only friend is made of glass & can be replaced easily.

I'm ready to put a DNAR (Do Not Attempt Recusitation) on her med file now. She is alive, but has no life. It is not what I want - I want her home, safe, healthy & well, but that is not going to happen - it is what is best for her. As she got worse, she wanted to go home. Her family wants her home. A certain (very) large Asian country has made sure that is not possible. I don't want her to go home, but I do understand she needs the family/village support that I cannot possibly give. So I yeild. At the first practial opportunity, she will go home.

The fights with Centrelink (who wanted her to look for work), My Aged Care (who do nothing for her that I can see), NDIS (who have been a little bit helpful), the bank (who froze her account as paying her nursing home bills is a fraudulent activity) & the local police (who sent someone with negligible training & his head rammed firmly where the sun doesn't shine (although according to his station: it does) has left m in a worse state.
Employer has been good, but that won't last forever... running out of options.

[white knight]

Hi PGSC, welcome

Sometimes a post appears and it leaves me dumbfounded as to how to help. But, I just can't ignore this one.

Govt agencies I tend to expect anything because a long time ago compassion went walkabout with their staff and computer generated letters hasn't helped. Be persistent with them, shorter sharp answers with wit etc. Then move on without dwelling on it.

Grief and adjustment takes time, we can't rush time. The absence of your wife in your life and her unpreventable illness commands a change if direction for you. We have to safeguard our sanity by challenging ourselves. New hobby, sports interests, meeting new friends, maybe a change of environment...im sure you'll work that out. I'm hoping a stranger suggesting it will bring about change.

Finally, please remember, there is reason to keep going. Life van surprise you if you face it's options.

TonyWK

[pgsc]

I had help from the local federal member (her staff really) to get the disability pension pushed through in 2 weeks instead of the "normal" 9 months. I had to try to find jobs for a person with dementia & a memory span of 30 seconds, whilst she was in nursing home lockdown. Not an easy task.

I'm really not sure if Centrelink or Xi Jinping is worse. It would be an interesting battle.

I still have OK days, I have bad days (today is one of them) & I have days where the bad days seem like a picnic.

Some days, I want to finish it.
But I have to get Mrs home first. Either alive or in a jar.

[white knight]

Hi mate,

Do you have other interests? Hobby, trade, sports?.

There is a limit to how we can help. I need your input. I'm here daily. If you'd like to expand on your lifestyle?

TonyWK

[Sophie_M]

Hey pgsc,

I also wanted to echo TonyWK's warm welcome to the forums, and we're so sorry to hear how much pain you're in. You've shown a lot of strength in sharing your journey with us, and it sounds like you have so much on your plate to deal with at the moment. It's understandable to be feeling really overwhelmed with it all, and please know that you don't have to go through this on your own. We think it would really help to talk these feelings through with the kind counsellors at our Support Service on 1300 22 4636, or on Webchat 1pm-12am AEST on our website: www.beyondblue.org.au/getsupport who can help offer support and advice to help you through this really difficult time.

Our friends at Lifeline (13 11 14) and Suicide Call Back Service (1300 659 467) are also there for you anytime- day or night- as often as you need to talk through what's on your mind when it's feeling like too much to cope with.

We're all here to help you through this, and we hope that you feel free to keep sharing with us how you are feeling, whenever you are ready.

[Hanna3]

Hi pgsc, (Hi Tony)

I saw this thread and had to comment. What a tough time for you pgsc! I'm glad Tony has been talking with you.

Centrelink and any goverment department can be a nightmare. Your local member would be a good idea, also any welfare organisation such as St Vincent de Paul or Anglicare might be able to assist you, or point you in the direction of someone who can. Sometimes people in the charities are prepared to help advocate for you.

Is there a social worker you can reach? There should be one at your nearest hospital, or even at the aged care home. It is free to see a social worker at a hospital and they should be able to give you some help, especially in dealing with government departments such as Centrelink.

I would strongly urge you to get the help of a GP, or doctor who can make a report for Centrelink about your wife's condition - and a social worker, who can help with the paperwork for the govt.

I truly believe this should be your first step in getting support and help for you and your wife. You could ring the switchboard of your local public hospital and ask for a social work department.

I am sorry you are having to deal with a situation as stressful as this. I'll come by tomorrow sometime and see how you're going. All the very best.

[pgsc]

Hi,

My work hours don't fit the hospital's SW hours. I had considered the Salvo's, but after checking their site, it seems I am outside what they want to deal with. Based on that, I figure the others will be the same.

Hobbies: none. No interest before, less now.
Sport: not since high school; and that was forced.

I really don't feel I can do anything for me (holiday/trip/etc) until I have her back home. It just doesn't seem right. I do know she won't care as she doesn't remember me; but I care.

I have reasons to keep going - although some days... - I need to get her back to her family & I have 4 people between 70 & 90 that I help look after.

PGSC

[white knight]

Hi again, thankyou for responding.

I know this sounds repetitive but, let's take sport, you don't have to play sport to be involved. Barracking for a team be it local, state or national isn't hard, it just takes time to know a team. Once the passion takes hold (mine is AFL bulldogs), I'm eager all week waiting for my team to play.

But I accept it if you haven't got the desire. Essentially the lack of hobbies/interests is a problem others cannot fix. It must come from within.

As an example- I write poetry when the weather is poor or I'm emotional, tinkering if at a loose end, drive our vintage car to the beach, polish/work/modify same, caravanning and so on. My schedule is always full, thankfully.

I hope you can find and interest that inspires you.

TonyWK

[pgsc]

I lost interest in sport over 40 years ago - possibly you weren't even born then. I don't enjoy any aspect of it. Watching grass grow is more entertaining.

Caravanning... sounds great, but when compare the cost of keeping one - Purchase cost, registration & insurance of a vehicle strong enough to move it, purchase cost, registration & insurance for the van + the extra fuel costs to tow it + site fees, it is cheaper to use hotels.

I will use any excuse & take any reasonable opportunity to travel, so I have looked at the costs.

Until I have her safely back with her family (NB: this is not what I want, it is what she & her family want), I feel I can do nothing for myself. She comes first. Always has.