I've been taking care of my mom and dad for 8 years. Since my dad passed away two years ago things have been tough financially and emotionally and my mom, who has dementia has deteriorated a lot. My mom lives with me and I am disabled. No family support. A nursing home isn't an option but I have to plan on us living somewhere more affordable. Thankfully we do qualify for subsidized housing and Medicare and Medicaid. Subsidized Housing has a waiting list of over a year. I am struggling to get help and resources to see places. I don't have transport and haven't been able to get support. This is constantly on my mind and I know the importance of it. I spent 3 months last year and 2 months this year making call am looking on the Internet and was just given the runaround and it became too much to deal wit that and day to day "stuff" - I feel between a "rock and a hard place", I'm burning out quickly. I spoke to 2 social workers and they both told me to keep doing what I'm doing. Most nights I don't have time to sleep. I don't think I need to tell anyone what it takes to care for a loved one and have to deal with my own health issues and not have help and support myself. There are only so many hours a day. If I didn't have my health issues I could probably work a lot smarter but I've spent too much time beating myself up for being sick. I'm overwhelmed with everything. I've tried to get help from the Alzheimer's association but they don't have any resources at all. I'm constantly thinking the "what if's" or more realistically the "what when?". Most times when I've asked for help I'm pretty much ignored which is pretty frightening. Do many people say that there is help out there then what am I missing?
Mom is my life and my whole world and despite all the negative and challenges we have and the life I've given up, I don't regret it at all and would do it all over again even knowing what I know today. The only thing I was completely unprepared for was the many relationship challenges I'd encounter on this journey and people I thought would be there for us turned out to be the first to disappear. I was not prepared for all the closed doors and isolation, not to this extent anyway. I'm sorry, I didn't mean to get off the subject. I really don't know where to go or what to do regarding living arrangements. Having to deal with all the day to day stuff and getting through each day without drowning is all I have in me. Trying to make time to sleep is an issue I'm having now. When I get the much appreciated respite time I use that opportunity to catch up on "household stuff" reading on this website and to get some sleep.
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On the topic of your friends, they probably see what you are doing and they care very much about you. But, they can't sit by and watch you destroy yourself. Believe me, they have their own problems.
My sister was disabled with arthritis and gave up most of her happiness, to care for Mother. The stress killed her. Mother just went on, like nothing happened. We tried to tell my sister, but she wouldn't accept our advice. Mother is 95 and as healthy as can be expected. My sister was buried on her 70th b'day.
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Talk to your mother's Medicaid caseworker. Is there any possibility you could get paid for some of the care you provide? For example, if they do an assessment and determine that she is entitled to 12 hours of a personal care attendant per week, and it is work you can do with your disability (and are already doing, most likely) in some states Medicaid will pay a family member.
When you talk to the social workers who tell you to "keep doing what you're doing" do you tell them "I can't! I'm burning out. We don't have enough income for rent where we are! I'm exhausted and worried." ? They need to hear the truth to be able to help.
You know 1/3 of caregivers die before their loved one, because of the stress of caregiving. You do NOT want that to happen to you!
Have you contacted any faith communities to help you with transportation and/or support?