Really just want to vent. Need to get it out somewhere.

This is a better place to "vent" and "get it out" than trying to talk to friends or co-workers about your situation. Of course there are those on this site too, who will guilt you and tell you what you're doing in wrong - if they show up, please just ignore them! There aren't too many, but they are out there. Don't feel that we're all like that, because we are not! Just ignore them.

You are in a tough position. Obviously you care for this person you've spent so much time with, but on the other hand you imply he isn't who he used to be (not just physically). I can understand the need to "get on with life" - you are still fairly young to be tied down to work and care-giving. As for the other man in your life - do be realistic with that relationship. We aren't there, so we can't make decisions or determinations, but IF you were suddenly "free", do you know for a fact that your relationship would blossom and become more than just sex? Be honest. Don't delude yourself. Has he made any commitment to you (not that it would be binding)? There are other "fish" in the sea, if this particular relationship is, for him, only about the sex, but you need to understand that if your situation changes, it might not be all roses and sunshine.

That said, it sounds like he really needs a "village" to care for him, if he can't perform ADLs (walking, dressing, getting to multiple appts, etc) You don't indicate what his illness is or whether it is terminal (not our business, but it would help to just know if this is a progressive condition and what else he can't do, such as bathing, cooking, etc.)

Since he is a BF, not a husband, do you have any "authority" such as POAs to take care of his needs? If not, you really need some outside help (need help in either case.) Ask his doctor if there is a SW who can work with you. Since he is disabled and has so little income, he would likely qualify for Medicaid which can sometimes bring help in, or can provide him a place in a facility. You could still try to advocate for him (with no POAs or guardianship, they may, at most, allow you to visit. If he is deemed cognitively competent, you wouldn't have any say with or without POAs.)

You've stood by him all these years and helped him all this time. I think it is time to help him even more and get him the help he really needs. Please, if you can get him the help he needs, and moved to a facility, don't abandon him. At least visit for a while, to ensure he is well cared for and is relatively happy. Ease yourself out...

There are people on this forum who took vows ("...in sickness and in health, for richer, for poorer...") and still feel the way you do about their caregiving situation. If you don't love him enough to stick with him, then leave. It may be worse for him to know you are only staying with him out of pity and not actual affection. Have you ever thought that after you leave HE may find his independence and someone who accepts him and his challenges (and maybe even loves him!) and it may be a blessing to him if you go. But you can still set up as much help for him as possible before you do. Contact places of worship to get him on their radar for help and companionship and support; let his friends and family know he could use more help, encourage him to join online clubs or do volunteer work within his abilities, etc. You won't be able to have it both ways so pick one and make peace with it. He will need to do the same. Here is an analogy that is somewhat pertinent: I'm an employer. The thing I hate to do the most is fire people, even when they deserve it. But I've had to let some very deserving and loyal people go over the past 30 years due to economic stresses. I horrible-ize it in my mind, I envision their anger, imagine them in the bread line, etc. Almost without exception they've gone on to get BETTER jobs than I could offer them. They are doing great! Was it emotionally, mentally and financially tough at first? Yes. Shocking? Yes. But then the smoke clears and they "righted" themselves and moved forward. If you leave and he doesn't move forward, that's on him -- not you. I sincerely wish you all the best and much wisdom and peace as YOU move forward!

Yep, most people find it easier to find fault than offer a helping hand.

This is a situation that only you can decide what is best for you.

Personally I would let the state deal with him. If he can't handle activities of daily living then he needs more care then 1 person can realistically provide, as you yourself can see by how tired you are.

I would rather live in a nursing home than with someone that was sacrificing their happiness to take care of me. I don't want to ever be that kind of burden on my husband, I love him enough to let him go if I was unable to care for myself, but that is me.

I, also could not go have sex with another man and come home to someone that believes that we are in a relationship, nor would I want to have my husband do that to me.

Kris, your ‘impossible ideal’ outcome – he lives separately with care, you still help – is actually very close to him living in a facility with the right level of care, with you visiting regularly. It may ‘feel’ different, but it is in fact very close. Find out about his options for Medicaid in a facility. You aren’t going to put him out onto the street, ‘homeless and in a wheelchair’. But at 40, you shouldn’t be living like a ‘single mum’, or with a ‘loved brother’, with no prospect of change. We all grew up in families knowing that there are different sorts of love, and they are not limited to one person.

Kris, I’ve just read your last post that says ‘My guy and my father...like people to do things for them, more than necessary. I make him do things for himself. That tug of war is highly annoying to us both.’ I’m shocked. You have been trained into this since childhood. Stop! Look at other options! If you don’t put yourself first, who will?

By stipend do you mean Social Security Disability? When people don't get enough in SS, they maybe able to get SSI, which is a supplimental income. With both SSD an SSI you get Medicaid and Medicaid has transportation and in home care. If he gets SSD he should also be getting Medicare.

You didn't sign up for this. Caring for him is not enough. Does he have family? If so its time for them to help him. Maybe get Adult protection Services in to evaluate him. Maybe there are care homes where he can live using what he gets in income. APS can find him resources.

Kris, I’m glad that this ‘vent’ has perhaps given you ‘permission’ to start looking to the future. Remember that most people in care facilities are someone’s loved one, and they are not abandoned. Some facilities have more younger people than others - eg younger women with multiple sclerosis, who might well have much the same needs. You can't be sure that his condition will deteriorate - he might find more company and blossom! Can you find a social worker or Care Manager who knows their way around the facilities and the system where you are located? If your social worker is only helping you ‘keep his insurances up to date’, perhaps s/he could refer you to someone who is more appropriate for future planning. You have done a great job, far more than could have been expected of you, but you really do deserve companionship, partnership and a sex life.

Kris,

I am not passing judgement on you. I will tell you the story about my neighbour. We moved into our house 23 years ago. After we had been here a couple years, I was out front with the youngest two. My dd was in a pink dress that had ruffles and bows on it, her hair was fairly long. Definitely looked like a girl.

C and his wife were walking along and stopped to chat. It was the first time we had met. His wife had had a serious stroke. She had trouble with words, could not tell the gender of the children, but could walk. She had vascular dementia too. I got talking to C and he told me the story. He was determined to keep her at home until such point as she needed help with toileting.

He also told me that E was helping with his wife, dressing, taking her out to get her hair done etc. He indicated to me that E had become more than a companion to him. Now here was a man, who until his wife's death 10 years later, kept her at home and when she went into a facility, he went 2x a day to feed her, he loved his wife. But he also needed companionship. He needed to feel loved and his wife could no longer do that in any manner.

I respected C and the choices he made. He did everything he could for his wife. He found a wonderful woman as a companion who helped him with his wife and was able to give him the affection he needed.

Keep in mind that your fellow is not the only person with limited income and a disability. Check what services are available in your community for people in his situation. Also be mindful that in some places, my province for one, if you have lived together for a period of time your may be considered to be in a Common Law Marriage and there could be consequences.

This reminds me of my mother when she was in her mid 50’s. She started dating a lovely man 7 yrs. her senior. He had a major heart attack several months in to the relationship. My mother, recently divorced, knew without a shadow of a doubt that while she cared for him very much, she had zero interest in being his care giver. She had been married 27 yrs, taken care of a husband & raised 4 children and she was only going to manage her own life now. She simply didn’t want the hassle or the burden.
She was honest right up front and he found his own care givers. When he became healthy again, they started dating once more. This happened close to 30 yrs. ago. They never moved in together & talk on the phone every day, as they are now 84 & 91. ..and she never did any hands on caregiving. Very smart. Very neat & tidy. ZERO guilt.

You sound like your life is like mine. However, I am older. My husband of 35 years cheated on me when my children were young. We went through therapy and I thought everything was ok. Fast forward to retirement and he wanted to spend time alone in another state where he inherited a house. Other examples of his unhappiness were present. Anyway, we seperated for 3 years because of finances and medical benefits. He still owned the house with me and decided to cut down a tree(against my advice and the tree people). Long story short. Tree fell on him and he is paralyzed. I have taken him in for 3 years and divorced him. However, still look after him .He is downstairs in a finished basement and bathroom downstairs and I am upstairs. I have a 2 sons for support but I want them to have their Life. In the meantime I do not live mine. I finally stepped up to the plate and was going to put him in assisted living and what happens on the very day we were arranging an appointment . My state said no cause of Covid. Just to let you know I feel your pain. Don't know what to do until this pandemic ends. In the meantime I exist. You were not married but I can see you are a caring person. I guess I am not one to give too much help cause I haven't changed much but I am here if you want to vent.