I have been caring for my husband for almost 3 years without one day off. He had a stroke in 2013. We have home health care 3 hrs a day, 4 days a week and she takes care of the housework pretty much. I do everything else. My husband can talk and most of the time his mind is sound. He can walk short distances.
I have burned myself out doing for him. Unfortunately I didn't see the "burn-out" signs until I reached the bottom. Now I'm having trouble just functioning. I am physically and emotionally depleted.
Any suggestion on how to get back to where I was?
Respite care is a common need for long term caregivers.
See what your other health insurance will cover. Private, ACA, Medicare, Medicaid, other state level assistance - whatever you've got. It may take a combination approach and steadfast diligence on your part. Exactly what you don't need right now, eh?
At the same time, call around to the area nursing homes to see who has a program and will help you deal with insurance. Your profile doesn't say how old you are, but if you're over 65 your area agency on aging may be able to help you as well.
One short burst of respite isn't going to cure much for long. I strongly encourage you to take a hard look at the complete picture here and figure out how much you can actually do over the long haul. Nobody's getting any younger and none of this is going to spontaneously heal itself.
It's one of the hardest things to deal with in a good marriage when one spouse has a care level that far exceeds what the other intends and is able to provide. Nobody wants to think about being separated. That's not the way it's supposed to be. It feels like giving up. But it's not. You can spend more quality time together as husband & wife if someone else is handling all the hard work & heavy lifting. If you aren't trying to do the work of 15 other people, you may find your time together far more rewarding. It will be weird at first, so don't expect to drive home with a happy heart on day 1. But your health may improve as does his state of being by having more of the right kinds of help.
You should not have to be so anchored to your home and your husband's care that you can't do anything for yourself. It’s not sustainable. If you had someone come in everyday for a few hours so that you could go out, that would be wonderful, but it's not likely to happen.
Suggesting a nursing home may seem extreme but if your health breaks down - mental and/or physical - that's what would happen anyway. And then your husband would lose your companionship.
As hard as it is to think about, it seems as if you should try for assisted living (if your husband qualifies physically) or nursing home care for him. To paraphrase sandwich42plus, if you aren't doing all of the physical and emotional work, you can spend a lot of time with your husband with a refreshed body and mind. You are not giving up on him by placing him in care. You are preserving your future together in the best manner that you can.
Burnout can turn into compassion fatigue which is truly an awful place to be. Please consider looking into this move – without guilt! You’ve spent 3 years glued to your husband’s side caring for him and you are breaking down. Anyone would.
You may find this article helpful: https://www.agingcare.com/articles/compassion-fatigue-caring-too-much-196224.htm
Take care of yourself, my friend. By doing so you are taking care of your husband.
Caring for a disabled person in the home is extremely challenging. Of course, you know that. I would look at the big picture and try to find him placement. You say that you tried to find placement through VA last year. Have you tried private facilities?
It sounds like he would qualify for Assisted Living due to his disability. I'd check that out. In NC, when I called to check on some assisted living facilities, they always asked if the person was a veteran. They had special offers for veterans. I'm not sure what they were, but I might explore that.
I hope you can find some relief. Respite care would be great, but only for the short term.
According to the VA website, respite care services are available for you for up to 30 days each calendar year. You can use the 30 days in different ways like 1 visit of 30 days or have 10 short stays of 3 days each during the year.
Once you get a break, start looking for a sustainable living arrangement for your husband that works for the both of you.
When I hit bottom, all of a sudden I felt dizzy and hit the floor in my kitchen. That was my wakeup call. I got up, looked in the mirror and admitted to myself that I was appalled by what I saw. I felt like my inlaws had sucked me dry and it showed. I felt terrible. I looked sick. I didn't want to die. And I was scared.
Go see your doctor. Tell the doctor all about these last three years. Cry. Let it all out. Ask the doctor to help you get back your health. The stress caregiving puts on the body can last for up to three years after caregiving ends. I'm almost in year three (my inlaws moved into independent living) and have gained back most of the weight/muscle I lost. Had I seen my physician sooner, I would not have gotten so sick in the first place. But there was a silver lining and that was recognizing how important healthy boundaries were to establish in the first place.
Medicaid allows spousal benefits so you won't be left without anything. You need guidance on how to best spend down - or in some cases, protect - your assets. I'd suggest a local elder law attorney.
Yes, a consultation will cost money, but if you are careful to find someone who truly knows your state's Medicaid laws, you can get a lot of help and some of your anxiety will be taken care of. The unknown if often worse than the known.
I hope that you can get the information that you need.
Take care,
Carol