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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.

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Just walk out, move on and find a new life. Unmarried people have no legal knot or contract for commitment. No longer working out is freedom to move on. If you feel guilty, call a SW! Help us still available, Covid or not.
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Karsten Jul 2020
Thats kind of the problem with shacking up. All the benefits with no obligation.

I am not casting a moral slant on this. If you want to live together, live together. But once you do that, you do have the responsibilities you might otherwise have if you were married.
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What's wrong with 'im?

Looking at your profile, there is nothing obvious to explain why he is immobile, why he can't wash or dress himself, or indeed why he can't get better.

Does it occur to you that he cannot be oblivious to your unhappiness, and that the two of you are in an incredibly unhealthy relationship which is As Bad For Him as it is for you?

You may be disabling him, with absolutely no awareness of it. Who else is involved in his healthcare? - especially, who else who isn't earning nice fat fees out of him?
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Marriage is a commitment. Living together isn't. If the two of you had intended to be together til death ended the relationship, you would have married. As it is, he cannot expect you to have any obligations towards him. You are already pretty much done with the relationship now since you are involved with another man. It seems unfair to both of you to go on as you are now.

Considering his condition, it sounds like he needs to be in an assisted living facility.
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I think either of your solutions are OK. But you cannot stay with him AND cheat on him. You said you cannot leave him and I believe that is very noble and honorable and RIGHT But if you stay with him, you cannot cheat on him.
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MargaretMcKen Jul 2020
Karsten, your own views are very clear, but there is no 'cannot' about it. It's easy to say that not leaving him is 'very noble and honorable and right', but none of us know what choice we would make ourselves in such a difficult situation. Many many men in this situation would visit a sex worker - would you say 'cannot'?
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No wonder you're unhappy! The guilt has got to stop. You deserve to be happy. And you still act like you're completely responsible of this man, he has no family? I know putting him in assisted living would take all of his social security and put guilt on you, but they do have options out there for help with the care. I'm dealing with that with my dad and it is great finally after 3 years. Don't know how you did it for 6 plus your boyfriend now.
You're still young, I'm 15 yrs older and get depressed also between my dad's alcoholism, his falling down , selfishness, etc. + Been with my boyfriend for 10 yrs who although doesn't live with me seems to always need me for some reason or another. He's got ADHD and it drives me crazy besides him being crazy at times. The stay at home mask thing doesn't help because mom and I rent apt. Together and I take care of most household needs and she's always home. I sit in my car as I am now, my office & haven , look at elder camera connected to my phone to check in on dad when I'm not there, and sometimes wish I hadn't because he's become so weak ( and booze doesnt help) he slips from one step from electric wheelchair to his bed. 3 days in a row now , right when I had a chance to go out and have fun.
The home care I just started getting for him is free through Medicare. Check into that.
And as for having sex and fun on the side, heck, you're in your prime and you're not married. Good luck, don't know what else to say but we somehow must learn and take time to be good to ourselves.
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You are entitled to a life. Certainly, you can remain friends with him; but, you must move on to live your life. Look into local resources that can provide him with help. Where is his family...they need to get involved in his care. You must move to transition from care-giver to caring. Seek resources that can provide your bf with support and involve his family.
There is no guilt in living your life. Life happens, good and bad, make the most of every day.
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Arwen31 Jul 2020
"You must move to transition from care-giver to caring"

This ^. This is excellent advice, you said it all in one sentence.
It's so easy to think we did our best just because we took care of everything and then to be so exhausted and unhappy that we have to skip the "caring" part, which is equally important, if not more.
Doing both is impossible sometimes. Choose the caring.

I have actually copied this sentence to remind myself of the same.
Thank you, Tibrew.
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From your description of his condition I believe your BF would qualify for a nursing home paid for by Medicaid. I can understand not wanting to place such a young person in a NH filled with seniors so I recommend looking for a smaller group home, usually housing 4-8 residents and often including younger residents. These usually work well for people who need lots of help with ADLs but do not need much actual medical care. My mother's cousin with Parkinson's was in a group home, one of several managed by a church based non-profit; some focused on residents with MCI, others on younger people with injury paralysis, MS, MD, or PD. The home provided transportation for medical appointments.

The doctor's office may be able to put you in touch with a social worker who can help you find such a home. If not, I would contact the Area Agency on Aging because although your BF does not meet the normal age of their clients, the SWs there keep a good list of LTC facilities accepting Medicaid available in the area.

I believe once your BF is comfortably settled in a decent situation, you will be able to continue your life without guilt.
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I don't have any advice, but wanted to say that you are a good person stuck in a tough spot. There aren't any clear "right" or "wrong" answers. Sending hugs your way -- hoping you find some sort of peace and way through each day.
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You are not alone, you deserve to be happy. What you feel is normal. Look into medicare / medicaid he could be just as miserable as you.
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Wow, I feel for you. My honest answer is that you cannot and should not continue to live like this. Is there any way that you could get a caretaker for at least some things to give you a break. And if not, perhaps look into placing him somewhere using Medicaid - talk to the professionals and the local Office on Aging. I know you care about him and that is commendable but at what cost to you and your own life. He could go on for years and your life will be over and in the end you will be the big loser. Has he any idea what effect all this is having on you? Perhaps it is time (after you get answers to exploratory questions) to open up and talk with him that you physically and mentally can't continue living like this. You do not have to leave and get out of his life - you can be heavily involved while he is getting care from a different source. That is what I would do before it is too late for you.
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Riley2166 Jul 2020
Someone questioned why there are animals? Obviously you don't realize that when there is illness or other strife animals are often the only ones in the world who offer unconditional love, companionship and friendship - that is all the person has in life (I am in that position - I have only my kitty and were it not for him, I'd not be here. I am disabled, no family and friends all gone.)
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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.
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kas15 Jul 2020
I just want you to know that I am here for you to vent.
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Imho, no one person can be a superstar caregiver, else you break, fall faint and ill. You need respite through any means necessary.
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Please remember that no one can work 24/7, nor take on a Super Mommie Track role. Nor may anyone expect miracles from you. It's like, what are you trying to prove for yourself?? Leave some help to the professionals trained for such tasks, and forget about saving desired money. It's time for Medicare/Medicaid to cover your BF's costs. Time to start a new chapter in your life. Only you can decide that.
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Arwen31 Jul 2020
"It's like, what are you trying to prove for yourself??"

This is another very good point.
Sometimes I realize I'm playing Little Miss Perfection myself and I'm learning to stop and try to ask myself "Why"? I'm not saying I find an answer all the times, but the question itself has a healing quality.
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I have not read all the replys but I will mention my thoughts. First be sure you know your state rules on common law. So you can not be held for anything, even though not married. Second, I would check out possibilities of a care home. There he would be taken care of and you could visit him. I am sure there is something that he would qualify for. Call 211 on your phone and they can advise you to the help that is needed.

You need to have your life and home back. It is not abandoning him anymore then a senior placing their loved one in a care home. One can only do so much.
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Look into Medicaid for bf. Don’t get too entangled w another man.
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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 are not married to your boyfriend .
You did not mention his family.
Is his friend (and girlfriend) willing to help out ?
What is his illness ?
why do you still keep animals ?
above all, take care of yourself;
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krisinCO Jul 2020
Nope not married. I don't want to be married, pretty much ever to anyone.

His parents are deceased. He has siblings, but they aren't super close and a few live in other states. He and his siblings really bounced around to various foster care places and often separately. It took a toll on them as people as several have issues and on their relationship. No children.

His best friend lives a little more than 100 miles from us. I know they would do the ideal scenario, would work well for them, but not realistic for myself. They are about to have their first child. So their life if about to get busier just in a general way.

The animals I keep because I love them more then pretty much anything else. Like on a scale it's my mom and sister, then my animals. They are getting older and I don't think I will be replacing them as they pass. My dogs range from 9-12.5. I also have 2 cats 6 and 9. They bring me a lot of love, get me out of the house on walks, and just provide comfort.
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Just quickly: is he getting Social Security Disability, SSI, VA medical assistance, or medicaid? If he is that sick and that broke, you and his doctor should be applying for SS Disability and Medicaid. You also have to teach yourself that you are not responsible for him, no matter how nice or generous or how much you loved him. If it was real love, you two would have been married. If he has children, get them involvled, he is more their responsibility than yours and you would have no claim as girlfriend on any part of an estate. Move him out and enjoy what's left of your life. As you've seen, you don't know how much and what kind of life you have ahead of you. You've already done more than expected. Move on. He is probably as unhappy as you are. Please excuse me if people have already covered these ideas. I am a caregiver myself and did not read every comment.
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krisinCO Jul 2020
No children.

No estate on his side.

Not married because I’m not the marrying sort. He wanted to. I don’t. 1. Never wanted to be tied into a massive commitment, haha as I am currently in one. 2. He was always the fun in the relationship. We laughed and enjoyed ourselves. We had a good life. He was impulsive and energetic. However, all that impulsiveness was also with money and he spends every penny he has ever had. I’m good with money, don’t spend frivolously, and have assets. I’m not splitting them with someone when it ends. I’m not selling my property to pay his Medicaid bills when he passes away. As a woman, I just consider that smart and increasingly common where the women are the bread winners. So many of my friends are. Yes, there are prenups blah blah, but I don’t/didn’t want to do it.

He has SSI, a primary private insurance, and Medicare.

I will be giving serious thought and looking into an assisted living facility.
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krisinCO: I'm so sorry for you both. You've been given great advice and support. On different notes, making a decision is usually the hardest part of any situation. Once the decision is made, the path is clear, and the situation usually is much easier to handle.

Your boyfriend has reached the point where he needs more than you alone to care for him. Answer this to yourself: what would happen to your boyfriend if you got sick or hurt? Who would care for him? Who would care for you?

With his physical issues, can he research LTC facilities or choices for himself by himself?

And one last note, he danged well better be appreciative for all you do for him. Plus, he needs to HELP YOU. You matter too.
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Kristin, I'm going to suggest action aside from the issues addressed by others, as I see something different in your actions and perspective.

Years ago I did some research on caring syndromes, causal factors and ramifications. It was "eye opening." I learned more about oxytocin, the effects of "too much caring", and the potentially disastrous side effects when someone has a need to care for others and consciously or unconsciously subordinates her own welfare.

That was my first thought as I began and continued to read your post and responses. You recognize the danger of the situation, but it seems that your need to care is an overriding drive, and somewhat of an obstacle to taking action.

It's to your credit that you are such a caring person. The issue now is how to control that, to set guidelines and parameters, and perhaps get some professional help as I think this phenomenon is something a qualified mental health professional should address.

I'm not suggesting you are unstable or anything like that. I'm suggesting that oxytocin overload is a behavior that someone well versed in hormones, side effects and curative actions needs to address. It's a complicated and challenging issue, but you recognize that change is needed, so do it carefully and with the direction of a qualified medical professional.


(The really thorough medical research was in analytical medical articles which I haven't been able to locate recently; I suspect they're been "retired" from online circulation.

But do read the first and last sentences of the paragraph beginning with "Studies of ocytocin ..." just before the topic of oxytocin production control in this article:

https://www.agingcare.com/questions/really-just-want-to-vent-need-to-get-it-out-somewhere-460085.htm?orderby=newest

It just touches on the issue of behaviors. If you want more detailed information, stick to the scholarly articles, of which this is one:

https://www.sciencedirect.com/science/article/pii/S0018506X11002807

This paragraph is close to the conclusions of which I read years ago:

"OXT effects on specific, higher-order social cognitive processes"

The jist of what I read in many articles years ago is that oxytocin can affect an individual providing caregiving services, to a level that it actually harms that provider.
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krisinCO Jul 2020
I will look into the oxt and it's effects. It's really interesting how hormones can effect us.

I know that long term cortisol can play a part in obesity, especially stomach fat. Which doesn't surprise me at all. I put on a good amount of weight over the years. In April of 2019 I really made it a point to address this issue. In October I started intermittent fasting and keto. Last year I lost 50 pounds. I haven't lost anything this year, in like a plateau, really would like another 20-30. But, I haven't gained, so I will take that as a win. My guy went low carb with me in November and it has really helped with his pain levels. As of a month ago has come off all of his pain meds, which he was on for the last 3-4 years.
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HI, ChrisinCO,

You are burning out and have to find effective LTC for your BF to give you a break, so you can keep your job and sanity, plus work out with a new companion. BF's level of required care is now beyond your capable responsibilities for him. I see that this guilt makes you feel trapped, but you don't have to be. Your SW and you need action ASAP to save You! Listen to what our Forum readers have advised. Either you need to move out, bring in in-home care via Medicaid/Medicare, or place your BF in a LTC facility. Get arrangements for the pets and his and your other issues. And, yes, we are dealing with our COVID-19 crisis. I will pray for you and your BF's best arrangements.
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krisinCO Jul 2020
I am definately giving the LTC some thought. It will make my life much easier and happier. It's the guilt that gets me and I will have to work around that one.
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krisinCO;

Thank you for the update regarding his situation. The details really aren't any of our business, but since you posted it, wow. Sounds like either they didn't catch the abscess soon enough, didn't get all the infection during surgery, or didn't have enough antibiotics (sepsis.) Not just a roller coaster ride, but the cyclone! I can certainly understand how this has taken a huge toll on you. Sounds a lot like what that actor went through, due to the virus, but he didn't make it.

Hoping the SW you work with can help more than the dietician did! She should have some insights on LTC places. Perhaps he could qualify for AL rather than a NH? Mom's facility is IL, AL and MC and there are many in AL who use walkers and wheelchairs. The assisted part of AL is where he would be able to get help with activities like bathing and dressing. They provide meals, but many AL apartments have a kitchenette too. He would be able to socialize better there perhaps. Granted many in AL are older, but there are younger ones too. That's where the SW may help - she may know of places geared more for younger people.

But, given what you described to MargaretMcKen about his abilities, he very well could qualify for a NH. My uncle was in one for his last years (unclear how long.) I know that he was active on a computer and was doing weights (obviously not weight lifting like the pros), so he could get around. I had lost track of him over the years (mom wasn't keen about dad's family, so we weren't close) but managed to make contact - we did emails for a bit, but it was when I was dealing with my mother, her dementia, getting her situated and her condo ready for sale, etc., so I didn't get to visit until later. At some point, he dropped a weight on his foot and the injury lead to first losing some toes, then his foot. He was diabetic. At that point he was mostly bedridden, but before that he could get around well enough and was living in a NH. By the time I was able to get there to visit (he was overjoyed to see me!) he was on hospice. I think losing the foot kind of dragged him down. The diabetes wasn't helping either.

Anyway, I do hope you can focus your energy on finding the best solution for both of you - a nice place for him where he can be cared for or some in home care to give you a break - even a few times/week and perhaps some respite care so you can take a vaca and breathe for a week or two would be great! If you find a nice AL that also offers respite care, perhaps you could get him to try that first, and see how he likes it. Some people have a image in their mind about AL and NH, but very often those today are much nicer. If I had to go to AL, I would choose the place our mother lives in (but the AL side - hopefully I won't need the MC side!) Once they actually see a nice place and experience it, sometimes they want to move in!

Do come back and vent whenever you need to. We (most of us!) understand and feel for you! Let us know also how things are going for you and the BF.
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krisinCO Jul 2020
Agreed on the abscess. Definitely don't think he caught it or didn't think it was an issue and so wasn't treated soon enough. They did have to go in and clean it out a second time as it had (I am not sure the technical term) like branched out. It took a large toll on his body. We went to specialist after specialist initially. Not with any real information. Mostly what happened was various tests were ordered, then told they weren't sure what was going on, but it didn't fall with in their expertise. Then they would recommend another specialist we go see.

It's good you were able to find your uncle and reconnect again. I am sure it brought him pleasure in a difficult situation.
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SSI and SSD are two different things. SSI is a supplimental income using tax dollars, like a welfare. SSD is Social Security Disability which you can only get if you have paid into it. With both you get Medicaid. With SSD you get Medicare and Medicaid, if needed. I will assume here that he is getting Medicare. He may qualify for SSI if his income is not high enough to live off of.

If his doctor agrees he needs 24/7 care this will help in getting him into LTC. Your problem will be getting him in with Medicaid paying. Not that it can't be done, just a little harder. Its easier to start with Private pay and get Medicaid when the money is running out. The other way is a hospital stay with rehab following. While in rehab you have him evaluated for LTC. If they say he qualifies and there is a facility attached to the rehab (they r where I live) he can be transferred over to LTC and Medicaid applied for. This will only work if you say you won't care for him and/or its notva safe discharge. Best thing, he does it willingly.

I might have missed it but I don't see if you mentioned his age. I had two friends one a 63 yr old juvenile diabetic and a 69 yr old type 2 diabetic. Both had renal failure. The 63 yr old could no longer do dialysis. years of needles had collapsed her veins. Her last chance was peritoneal dialysis. Look it up. My 69 yr old friend had regular dialysis. After going 3 days a week for years he chose to stop his dialysis. As did my 63 yr old friend. (Peritoneal dialysis is a last chance effort. If done at home, a family member has to be trained) They both passed within 2 weeks of stopping dialysis. But both were just tired. Just want u to know what is in your BFs future. If you r not willing to do this, then he needs to be somewhere where he can get care.

Is it possible to get him Medicaid in home care. Would give you time to yourself.
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krisinCO Jul 2020
Sorry he has SSD, not SSI.
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You are between a rock and a hard place. I think the caregiver role comes with built in guilt. You have received a lot of good advice, now you need to think clearly for you and your boyfriend. Change is scary, but sometimes for the best. You particularly need to start thinking your situation through. If you need to, make a list of pro’s and con’s, kind of should I stay or Should I go. You will have to be the proactive part of your relationship, dealing with doctor, social worker, potential forMedicaid, etc. May take time but get started. The best that can happen is your boy friend ends up in a good place where you can visit regularly and get on with your life, the worst is two lives circling the drain.
Be strong and honest with yourself.
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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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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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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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krisinCO Jul 2020
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, 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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krisinCO Jul 2020
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 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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krisinCO Jul 2020
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 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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krisinCO Jul 2020
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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