And this is on top of an unhappy, sexless marriage. In addition, I am uncertain how much longer I can continue with constant injuries sustained from (for example) trying to assist her with transferring, etc. Caregivers are not machines and must take care of themselves in order to be there for the person being cared for.
I care for my mother who has late stage Alzheimer's. She used to live with me in my house and I had to care for her 24/7 for 2 long years. I was so burned out. My health was suffering, my children were suffering, and my marriage was suffering. I come to resent my mother. Finally, I had to move her out so I wouldn't go insane.
Your situation reminded me of a poster who shared his story a couple of years ago. He owned his own business, so he was super busy at work. When he got home, he had to care for his wife who had some serious health issues. If I remember correctly, his wife had a stroke and had mobility issues. On top of that, his wife was not old enough for Medicare. He thought he couldn't get his wife to qualify for any governmental program due to their income. He was advised by a number of posters here to seek advice from an Elder Law attorney. He did and he was able to get his wife into a nursing home where she could be cared for 24/7. He then could go back to being a loving husband instead of a burned out caregiver.
Stay tuned. Other posters will come and give you more info on how to get help for your wife and yourself.
I am glad you found this forum.
"I am a retiree caring for spouse full-time who has secondary progressive MS. We have no support network and must rely on home health aides (paid out of pocket since "Custodial Care" is not covered by Medicare and (as part of the working middle class...) we also do not qualify for any of the assistance programs administered (whether at our county or state level) by Medicaid."
I agree with polarbear that you should invest in a consult with an elder law attorney. Even if it turns up nothing, then at least you know you've explored every available option. I'm so sorry for your circumstances. Yes, do take care of yourself.
Welcome to the forum. I hear your exhaustion and feel your pain in your posting. I too was a longtime caregiver in my home. It’s the toughest job ever!
It never gets any easier, only more difficult, right? So, I highly suggest that you contact your wife’s doctor’s office and ask for a contact number and email for a social worker to speak to.
Social workers deal with health situations regularly and they can tell you what options are available regarding care for your wife.
Wishing you peace as you navigate your way through this difficult period in your life. I certainly hope that you will find a viable solution soon.
With me, Moms money was running out at the AL. Medicaid gives you 90days from application, to spend down, get them info needed, and place the person. I started Moms application in April. Using her last 20k, I placed her in a SNF on May first. In June I checked with her Medicaid caseworker to confirm he had all info needed and Medicaid started July 1st.
So get to that lawyer to see what options you have to protect yourself. Then place your wife into a nice SNF that will except Medicaid. Better you get her in on private pay and work into Medicaid.
Please, don't allow yourself to feel guilty about a decision that needs to be made. I have heard of a lot if people that end up in care for MS. Its debilitating and the person needs more care than one person can give.
And don't think for one minute that your wife doesn't know that you're unhappy. It has to come across to her one way or another. And don't you think she is unhappy as well, with not only her physical limitations, but also with the way things are in her marriage?
Caregivers are not machines, you are correct. They are human beings with physical and mental limitations, but typically they are also people that love the ones they're caring for, and that in some sense does make it a little easier. Now don't get me wrong, there is nothing easy about being a caregiver, it's the hardest job there is, but when you love the one you're caring for, you tend to be able to tolerate a whole lot more.
And of course as a caregiver, it is of utmost importance that you are taking care of yourself as well. So when you have your paid caregivers coming in, make sure that you are getting away and doing things that bring you joy, as that will help rejuvenate your soul and allow you to continue on this journey.
And if you decide that you no longer want to continue on this journey with your wife, then you need to step up and do what's best for you both. Whether it's getting a divorce, placing her in the appropriate facility, or seeking and getting the help you need, as you both deserve to be happy. I wish you the best as you try and navigate what comes next.