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

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.

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...

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.

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.

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’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?

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.

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.

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.

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.

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.

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.

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.

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;

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.

Look into Medicaid for bf. Don’t get too entangled w another man.

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.

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.

Imho, no one person can be a superstar caregiver, else you break, fall faint and ill. You need respite through any means necessary.

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.

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.

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.

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.

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.

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.

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.

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.

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.