I am beyond compassion fatigue. Not sure where to find actual reliable help?

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First Dad, Then Mom, Now my husband... it's been since 1995 that I have not had someone as a care receiver. With my parents it was usually 3 - 4 days a week, and occasionally more that I would help, give companionship, and deal with their needs. And it started out slowly enough. Husband got sick about a year before Mom died. His ongoing chronic illness fluctuates constantly and it's extremely unpredictable. Just when I think he's getting better, he ends up back in bed or unable to function. Then when I think he's never getting better, he starts to get bit normal. It's beyond chronic fatigue as it includes autonomic nervous system, digestion, balance, dizziness, and an inability to process information well. Kind of like dealing with someone that has slight dementia, ms, and a brain injury -- some days and other days just a really bad flu... Making it impossible for him to do much. He might seem fine to others, and just lazy, but that's not him. He used to be a highly responsible, quickly responsive, and active man both in his work and in his hobbies. Now? Well, he just went a week without a shower, only left the house to see a doctor, and suddenly today decided to take the bus to see his mental health counselor. I have very little support any more. Friends think he's just depending on me too much and that he should do more, try harder, and be less needy. Family ? I get lectures from my sibling every year or so, haven't seen him in maybe 4 years, maybe longer. There is little social. I know I sound annoyed, bitter and angry, but this past week did me in. What I've tried to do is talk with friends. Some listen. Others very quickly tell me to find a support group. One frequently invites me for walks and lunchs and I am most grateful. But in reality? I feel isolated, alone, and heck, if not for Facebook, I would be completely alone. What does a 60 year old woman do when there is no help available? The VA might help if he gets a service connection determination, but without that, they offer great medical. So far -- in 5 years, I've not found anything that really helps. I may start a support group myself, but my counselor 2 years ago warned that it would take to much energy. So frustrated. So tired. So not wanting to be a caregiver. Where can I find: Household help, Occasional companionship for him, an occasional driver who would take him on planned outings so I can plan my escape? I've got to get away for a few days. It wont' fix anything, but I desperately need time away where I can fully relax, have food brought to me, and allow myself to just melt.

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Hopeforpeace, you mentioned Facebook. When I was in desperate need of a vacation, and one happened to come along, I felt I couldn't take it because of Mom. I also felt if I didn't take it I'd lose my mind. After looking at the list the hospital gave me for caregivers and either I couldn't afford them or their profiles looked, idk, uncomfortable, I actually asked on Facebook if anyone knew of an adult caregiver. Within 5 minutes one of my son's best friends said his Mom did exactly that! I was floored. I'd actually met his mom before and never knew that. I guess my point is, when you're truly at that stage you WILL find a way. But you have to really start squeaking that wheel. I'm 60 also, and I know it's not easy. Everything you need is probably just outside your comfort zone. Maybe not, but you won't know till you've exhausted all avenues. Good luck. Paying jobs get at least a weeks leave every year, you're entitled.
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Get in touch with Jay Rodne who represents Snoqualmie in your state legislature. He is a Gulf War vet. He can help.
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We are not criticizing, just digging for helpful details. I see you are in Washington, which is a medical cannabis state. See a neurologist who will prescribe that. It was very helpful for my daughter who battled brain cancer. It will relieve the headaches, nausea and anxiety. Your husband should be getting SSDI and Medicare; apply for that, too.
Finally, apply for VA Aid and Attendance so you can afford to have an aide, PT,OT and bath aides at home.
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i don't know .. maybe this is the wrong place too???
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Yes, he has a complicated diagnosis of a neurological illness called myalgic encephalomyelitis. It took 8 years to get that.
He won't die if I leave the house and I get plenty of short bursts of me time. But I am still the one that does everything else, so like any other job, if I don't get it done today it is staring at me until I do it - whatever it might be.
NO IT IS NOT PSYCHOLOGICAL. NOR IS IT DIETARY RELATED. I don't want other people's diagnosis. He's got the medical aspect covered. He does what he can, but believe it or not, some days it's a choice between showering or being awake. On a negative day, I would say he just got need. The reality is he is very ill and he can't control it with diet, mood, exercise, psychology, or any alternative method. Uut unless you have been with him for a few days straight, you can easily assume it's just a mind trick and if he really wanted to feel better he would. i've gone through all of that anyway.. and for a while it was wreaking havoc on our marriage. The reality is people don't question when other say someone has cancer, had a stroke, or has MS. But they sure do when I tell them my story. Just like a couple of you.

As for what is preventing me from working? The off and on needs, doctors, driving .. but he is so much better now that the only thing preventing me is a lack of momentum. Yes - you are missing the point, Barb. The problem is lining up a NEW job when at 60, the market is rather jaded and especially for those who need occasional time off to deal with doctors and medical things.
As I also said, Barb, I can leave the house. AND I DO. But I am still exhausted and need a break. As I am sure most of you know quite well, the nature of being a caregiver means that even when on a couple hour break, you still have stress. If you are the one responsible for all the stuff that needs attention, your breaks don't really rejuvenate.

THAT friends, is why I am trying to find some help and have run out of ideas.
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So, what does your husband need that prevents you from working part time, or going out to the library, to an exercise class? Maybe I'm missing something. Is he unsafe at home alone?
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hopeforpeace, have the doctors been able to put a finger on what is going wrong with hubby? When I was reading your post, I was thinking mind over matter, that maybe it is depression with your husband. Some men go through a type of menopause themselves, when hormone levels are down. And also vit B-12 is too low and that can make anyone feel really tired.

My gosh, you've been a caregiver for over 20 years, that is 1/3 of your lifetime if you are in your 60's. It is almost like now you are free of caregiving, and your husband doesn't know how to handle it, so he becomes ill.

Can you and hubby afford to pay a professional caregiver for a few hours a day couple times a week? My Dad [in his 90's] had caregivers daily but once a week he had a male caregiver and that caregiver would take Dad to the mall, so they can "people watch" which Dad enjoyed.

For yourself, find a talk therapist who is around your age, who had dealt with aging parents and can give you some ideas to help hubby and yourself.
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Thank you -- the VFW hasn't helped at all. I'll try the AL
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Your nearest veterans' post, VFW or American Legion will help. Call them.
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