My husband is diagnosed with Parkinson's and while there are finances it makes it difficult for me to get time out to just find myself. I also have a diagnosis of osteoarthritis, hip problems. I am not old enough to collect SS and I don't qualify for SSI or SSDI as I was fortunate enough to stay home and care for your kids and I have too much money for SSI. My insurance premiums are almost $650 a month with a $6300 deductible and I receive treatments for pain management which cost me $180 a month. My husband collects SSDI, but prior to the doughnut hole disappearing due to a law change, we had medical debt on credit cards in the tune of $70,000, which put us in bankruptcy. The money I have is in a trust account which I can only receive which was set up by my dad prior to his passing and while I do receive an income from this money, I am not allowed to make any changes in that but every 5 years and I get a 2% increase for COLA every 2 years. Dad has not been gone more than 1 year, and bankruptcy is taking the majority of our income. I need to be able to have time for myself. I do have 2 children but they are not able to help as they too have serious health issues. I don't get much sleep due to my husband's Parkinson's and during the day I am always on guard because he falls frequently. I also have my own health issues to deal with, and must take my husband with me to these appointments as I can't find care that I can afford while I am at these appointments and he can't be left alone. I live in Michigan. Of course COVID-19 is also creating a problem with care providers and my husband is a high risk person due to his heart issues. If anyone has suggestions to even help me to find me time, I would greatly appreciate it.
I was a caregiver for years for my husband who had had a massive stroke many years ago, and later developed vascular dementia. He too was a fall risk, before he became completely bedridden for the last 22 months of his life. I always made sure that I got out of the house on occasion to go shopping, go to lunch or supper with friends, go to church, or just sit outside on our patio. You can go for a short walk, just to get some fresh air, read a book alone in your bedroom, work on any hobbies you might have, just to name a few. The important thing is to just do something for yourself on a regular basis. Otherwise as you are discovering you get lost in the everyday minutia of caregiving, and burnout starts to set in. You don't have to have a lot of money to do any of the things I have listed, you just have to make yourself a priority.
Even when my husband was completely bedridden, and during Covid, I still went out and about occasionally, but I had an inexpensive security camera in the living room where he was, so I could check on him through my phone anytime I wanted to. So where there is a will, there is a way.
And if you just are not comfortable leaving your husband home alone, I believe there are some Senior Services agencies that can send out volunteers at no charge to sit with him, while you get away for a little while, and probably your children could stay with him for short periods despite their health issues as well.
I found that as long as I was able to still do some small things I enjoyed, even if it was just for an hour or so, it helped my mental status greatly, and I could carry on caregiving for my husband. Wishing you the best, and hoping you make yourself a priority too.
The only respite you maybe able to receive is thru Medicaid which ur husband probably is on. Check out Adult Daycares and see if they except Medicaid. Then see if Medicaid will pay partial or fully for husband to go everyday or a few days a week. Moms Daycare picked her up and dropped her off. Fed her breakfast and lunch. She had therapy there and they bathed her for me.
Is your husband on Hospice? Is he eligible for Hospice? If so Hospice will provide about 1 week of Respite per year for the caregivers of a Hospice patient.
The other thing that you would be able to take advantage of is Hospice would send a Nurse out weekly, a CNA would come at least 2 times a week to help out for a bit and order supplies and you can always ask for a Volunteer to come stay with him if you want to get some things done.
Contact your local Area Agency on Aging they may have options and ideas for you