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

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

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My boyfriend has been sick for 4 years. We have been together for 9. I feel like a single mom and not a partner. I take care of him, work full time, pay all the bills, take care of the animals, etc. He has numerous doctor appointments a week. It is time consuming, tiring, and expensive to care for him. I do it because I care for him and if I didn't:

1. can't take care of himself ie dressing himself, uses a wheelchair/walker

2. doesn't have much money as he can't work, he does get a disability stipend, but it wouldn't cover living expenses by any means.

I am incredibly tired, unhappy, and lonely in my life. I am 40 and this is my second person that I have taken care of. I took care of my dad for 6 years after his stroke. I never wanted to do it again. 2 years later my guy got sick.

For the last 9 months, I have been seeing someone on the side. It is really just sex, but would be more if I was free to be. I noticed that after I see him, I actually get sad and a bit depressed. I think it's because in my life I feel so frustrated with the situation. I imagine what should be vs what is. I just want to be happy. I want the life I should be living. I want more relationship wise. But I feel so bad for that because what does that mean? If I say I want to be with the other guy all the time, but I know I won't leave my bf. Is it I hope he dies? I don't, but I also know that all of the issues I currently have will be immediately resolved when he does. So then I feel guilty.

Ideally, if I money was no issue (which of course it is :) ). I would buy a house near me, pay his friend and his wife a salary to live there, take care of him. I would pay all of the bills and check in on him often. This would ensure that he is cared for, has his needs met, and I am free to live my life. Obviously, this isn't a viable solution. It would cost me more than I make in a year.

I don't talk about this in my life really because it's an awkward conversation. I would either get one of two responses from people that I know.

1. You should totally leave him (which I am not due to the above reasons)

2. You're a bad person for cheating on a sick guy. Don't you know your entire existence should revolve around other people and their needs/happiness? Yes, a bit of an exaggeration, but honestly not that far off. It is easy to feel holier than thou when it isn't your situation or problem.

Caregiving Relationships Spouse

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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...

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The initial sickness was he went into surgery for an abscess on his leg. We fully expected for him to be off work for a few days then go on with life. His body did a complete shut down after it. Went into renal failure, had to have some organs removed, massive nerve damage, lost over 100 pounds. He spent months in the hospital then a nursing home for a month the first year. The second year he was home but very sick and was basically like having a person in a coma at home. Literally left the bed for the bathroom and the many many doctors appointments. The third year his health took an upturn and he was feeling better physically, finally was hungry and stopped throwing everything up. But was having large emotional swings. Dealing with what he lost. That was the worst of the years. I told him he had to get a therapist and work it out or he would have to leave. I found him one, took him to the appointments etc. it did help. We are in the fourth year now. His health has evened out. He’s in end stage renal failure, but we haven’t had any new diagnosis. Once he started dialysis he became ravenous and put on over 100 pounds. I took him to a dietician, but that was useless. Said to eat 4000 calories a day with 60% carbs. I put us on a low carb diet. It helped dramatically with his pain.

I do have a POA, I have a social worker for him through the kidney center. She helps me keep his insurances all up to date.

As far as the new guy. I’m not sure exactly where it would go. It’s someone I’ve known over a decade. However, I think it’s more to have the option and possibilities. I am not the type of person that needs a man to be happy in my life. But I do want sex and companionship. I want a partnership.

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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!

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Well, he would have to leave. It’s my house. He has no money. Which is one of the major issues. He would basically be homeless in a wheelchair. He gets a small stipend. Which wouldn’t cover regular bills. I pay the house payment, the utilities, the food, the insurance for the vehicles, for the animals. Etc.

(4)

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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.

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I’m with you on not wanting someone to be burdened by me. I’m an extremely independent person. My mother and sister both have that personality trait. I say that I don’t want to care for anyone ever again. But I would take care of my mother. Not only because she is my mom, but because of that personality trait. She’s totally the type that we be crawling on the floor down the hall, “mom do you need help?”, “ no, I got it”.

My guy and my father (when he was alive) both (shocker) are people who like to be cared for. They 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 agree with you on the sex thing. But, I don’t feel like I’m in a relationship...aside from name. I have a guy that can’t dress himself, can’t care for himself, has lost some mental function, we don’t have a physical relationship. I show that I care by dressing him, cooking all the meals, cleaning the house, paying all of the bills including his medications.

I am not fulfilled in this life. I need more. I should be in my prime, living the best life and I’m stuck in this cycle of exhaustion, loneliness, and unhappiness.

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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.

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It does look close to that. I expect it will come to that point eventually. I am not sure if he is debilitated enough to live in one currently. He can’t dress himself, is in a wheelchair about 50% of the time. He can walk around the house, but not stand more than 1-2 minutes. Mentally has declined a bit. Not sure if it’s the meds, toxins from the renal failure, small stroke. Etc. But if he doesn’t have to go anywhere, he can amuse himself and do small tasks. Like today I had to work in a town 100 miles away. I made breakfast before I left. I left him a cold lunch in the fridge and a fish meal that I prepped (he just had to pull the pan out of the fridge and stick it in the oven).

He is in end stage renal failure on top of his initial sickness. We have had the conversation that I’m at my limit on what I can do care wise. If he continues to need more help he would have to go into a home of some sort.

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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?

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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.

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Yes, he now receives SSI. Initially for the first couple years he was getting long term disability payments through his job until he finally got approved for SSI. He does have Medicare. They do have transportation to and from appointments, but they can leave you sitting there over an hour at times. I work from home most of the time and have a very flexible schedule. So honestly it’s easier to just run him to/from dialysis. His doctor appointments I want to go to because he doesn’t give the right answers (gives what he thinks they want to hear) and then doesn’t pay attention to what they say in order to relay it.

I will need to eventually look into a home. I have it in my head that 1. I don’t think he is debilitated enough to live there. 2. Once he does will dramatically decline.

His parents are both deceased. He has siblings, but they grew up in foster care separated a lot of the time and aren’t particularly close.

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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.

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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.

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Exactly. He loved and cared for his wife. But, what they were initially was gone.

I care for my guy. I hurt when he hurts. I miss our life. But, it’s gone. It’s not coming back. The dynamic of the relationship has drastically changed.

I want more than this from my life. I have already taken care of one person for years. I know that it can be consuming and you can lose yourself in it. I can’t do that again. On the other hand I want him cared for and when I look at other options they generally have large negatives. I’m a strong person and I can do it, but it really takes its toll.

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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.

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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.

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

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