A little back story. I have been living in my Mothers home as her full time caregiver for 24/7 for 3 years. I am on SSDI as my primary source of income. I have seen my savings dwindle and have had very little respite during this time. I told my siblings that I would need a few things if I was going to stay being my Mothers caregiver. I wanted 2 weeks respite a year, $800/month for caregiver pay and the house left in my name if my Mom dies before I do. I also gave them 3 other options if this was not acceptable to them. They came back stating that I was doing disability fraud. Should I get an attorney to protect myself? I really need help here - I feel so alone.
If that is their response to your request for help, let them make other arrangements. There must be boundaries. You should not ruin your health, or impoverish yourself to care for loved ones.
You're not alone. I have Multiple Sclerosis, and receve disability. I worked 35 years, before I was forced to retire. I have seen my fragile health go steadily down hill with the 24/7/365 caregiving. The stress is killing me, while my siblings enjoy their many vacations. They left me alone to do the caregiving, and are now quite content to leave me alone to handle his dying.
This is what helps me. I do what I do for love. I let that love empower and enrich my life. Rather than anger I feel sad for my siblings. . That last part is a work in progress. If the stress of caregiving shortens my life, good. MS is hell, and I don't want to handle old age and MS. I live my life to the fullest with a heart overflowing with love and a mind at peace. Who is it that said living well is the best revenge. I think your wonderful, doing an amazing job.
But honestly? I'm trusting that the ALF they've found for her is a good one; and that being so this could be a good move for everyone concerned. Your mother will be safe and cared for. Your siblings may begin to involve themselves more in her life, which will be nice for her. You will still be able to visit her as often as you can and choose to. And you will be relieved of a serious burden, really too much for any one person on her own, especially someone in poor health. I really hope it works out well for everyone.
The social security/disability/income allowances issue is such a mess, isn't it? We all know that 24/7 caregiving isn't a job for one person, it's a job for a team of three, ideally with back-up! But/so somehow it works out, in our twisted reality, that it's fine for you to cover your mother's needs unpaid, because that doesn't disprove your inability to work outside the home; but the second anyone suggests compensating you financially for what you do in the home that proves that you *could* technically do that job somewhere else so, hey, why don't you? And get paid the market rate? There's such a mismatch between what a job demands, and what it's assessed to be worth in cash terms, and in what circumstances people are entitled to support from the state, and what they should be supported with. It all gets so Kafkaesque.
A similar kind of trap put me off applying for a job just today, or played a part anyway - terrible timing was the main issue, because my ex-partner is going into hospital tomorrow and will be laid up for about six weeks; but also in terms of household income it made no sense. I would have doubled my personal weekly income, nearly, but it would have cost my mother much more than the job paid to pay someone else to cover the time I'd have been away from home. Add travel expenses, tax deductions etc and it would have cost us as a family around $30 a week for me to be out of the house for 20 hours. Add in all the things that paid caregivers don't do, that I'd then have to fit in to my 'spare time'… It made no sense even to try. What makes me smile, wryly, is that my sister would have the same view as your siblings and would have gone for that plan: she's cool with paying other people to take care of our mother, and she thinks I should be supporting myself. But pay me for caregiving? Oh no. I'm here for love, not money.
Which I am. But I still think the whole value system is a right muddle.
Big hugs to you. I feel excited that you're getting your life back! - I hope it goes really well from here.
I wonder what their lives are like. How their spouses have not been affected, how their children, if any, were never affected, but how your entire life was upended by caring for another adult 24/7.
I am so sorry for you, and applaud you and all you did.
Just one thing: once your mother is safely accommodated, don't do that thing my (lovely) cousin does of virtually co-opting herself onto the ALF staff! She's nearly as stressed now as she was when my (also lovely) aunt was still living at home; and that's because she hasn't be able to step back and let the nursing home do its job. Mind you relax and let go, and all will be well. Good luck!
just a thought