reaching out for support that is much needed

[Kiwi68]

hi everyone,
im new on here, but im going to do my best to reach out
im a full-time carer to my husband who has paranoia schizaphrenia , and  now 7 years ago he has been diagnosed with FTD  frontotemporal dementia
his  only in his mid 50s , ive been on this journey for  8 years now  and its becoming extremly  tough now
i have no family supports , no close friends anymore , my husband cant get NDIS as his from NZ but ive managed to get him my age care 
his behaviour is now changing again, i have been under extreme stress, carer burnt out, lack of sleep, i have my own health issues im dealing through day by day, i suffer from PTSD for 20 years, ive reached out to carer gateway , respite places, other organizations , my local GP, nursing homes , my local MP
given the fact my husband  cant get NDIS i have limited supports for myself and my husband
im finding my caring role is becoming a real challenge now,  as im now mothering my husband and im getting very depressed more, it makes me cry inside and how cruel life can be ,  im feeling very alone , nobody to talk to anymore that can understand a caring role that is very demanding and complex .
ive recently been sexually assalted by my husband , ive lost my best friend due to my husbands behaviours , he has day respite where he can go 3 days a week, but this is changing also  as my husband has now become fixated on a worker at his  respite centre , which now gives me no break  and not knowing what to do.
im  beyond trying to reach out to supports , my husband is under mental health also , which ive several times addressed my concerns and seeking advise, i dont  have much faith in mental health they just want to give my husband more medications to make him sedated more which i refuse to, as he almost died 3 times from mental health
i have tried several times to get my husband into a nursing home for respite for 2 weeks, but nobody will accepted him due to his under 60 , and a history of self harms, and he tends to run away to return home to me.
if anybody out there has any ideas or  advise  
i love my husband dearly, he never asked for this to happen to him or our marriage
but im on this journey with him, for better or worse or sickness and in health

[Sophie_M]

 
Hi Kiwi68,

Thank you so much for sharing here. We’re really glad you’ve found your way to the Forums, especially during what sounds like an incredibly heavy and painful time. Reaching out takes courage, and we want to acknowledge the strength it takes to speak so openly about what you’re going through.

We’re deeply sorry to hear the immense toll this journey is taking on you.
Even in a role where we're caring for someone, sexual assault is something you should not have to accept as part of this role. We are so incredibly sorry that you experienced this. Caring for someone with complex mental health and dementia needs is one of the most demanding roles anyone can take on, and doing it with little support is an enormous burden to carry alone. Your love and commitment to your husband are clear, and it’s heartbreaking to hear how isolated and overwhelmed you’re feeling.

It’s clear you’ve gone above-and-beyond to seek help, and we understand how exhausting it must be to keep reaching out and hitting barriers. Just in case it’s helpful, we’ve listed a few services below. There’s absolutely no pressure, and we completely understand if you’ve already tried some of these:

• Beyond Blue Support Service: Available 24/7 on 1300 22 4636 or via webchat.
• 1800RESPECT: Confidential support for people impacted by sexual assault, domestic or family violence. Available 24/7 on 1800 737 732 or online.
• Dementia Support Australia:Offers safe, facilitated groups for carers of people with FTD. You can join online or in person. Learn more here.
• Disability Gateway: Might be able to help you find respite services in your area. Call 1800 643 787 or visit disabilitygateway.gov.au.

We’re so sorry if you’ve already tried these options many times. You deserve support that truly meets your needs.

Thank you again for sharing with us. This can be an incredibly isolating experience, but please know that this community is here for you. You are not alone, and we’re here to walk alongside you as best we can.

Take good care of yourself, Kiwi68.

Kind regards,
Sophie M
 

[Canopy]

Wow, you sound like a beautiful person trying to do the right and best thing for your companion while enduring your own struggles. 

You've unfortunately come up against the privatization of care and how individualised we are as a society, and often deeply alone, in seeking support that is direly needed. I looked after my father who had dementia/alzheimers on my own while quite ill myself. Unless people have taken on this role they will have no insight into how demanding and hard it is, no matter that you offer care, dignity and love willingly. 

It's horrible to hear you've been sexually assaulted by your husband and lost friends due to his complex conditions. This is not something anyone should have to accept. 

You mentioned you managed to secure your husband a home care package? What are the reasons for your husband not being able to access the NDIS? I understand if you can't be bothered answering this, but he needs to be on the NDIS and then you will have respite options outside of aged care. 

You could also try contacting Carer Gateway 1800 422 737 who can potentially organise emergency respite. If you haven't already you may try calling them to explain your situation and maybe they could offer some suggestions. 

I'm sorry you're dealing with this alone. It's great you've reached out here.