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.
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.
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?
Considering his condition, it sounds like he needs to be in an assisted living facility.
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.
There is no guilt in living your life. Life happens, good and bad, make the most of every day.
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.
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.
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.
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.
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 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;
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.
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.
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.
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.
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.
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.
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.
It's good you were able to find your uncle and reconnect again. I am sure it brought him pleasure in a difficult situation.
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.
Be strong and honest with yourself.
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.
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.
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.
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.
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.
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...
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.