Caretaking is getting me down, and I feel trapped.

My s/o has worsening mobility problems. I've been helping him a lot for a long time. I do his shopping and his laundry. I clean his house. I cook. Sometimes, I help him with bathing, if he feels weak.

All of this would not seem like that big of a deal, if we lived together. But we don't. We used to, but there was a good bit of turmoil in the relationship. He was just as happy as me when we got separate apartments some years ago. We were still s/o's and did a lot together. For a year now, his health has been falling apart. I have always been available to him when he needs any kind of help. It's getting to be where I'm afraid to leave him alone for more than a day. He can barely walk. He can barely get up out of a chair.

And it's not like he has a terminal illness and just a few months to live. There is no end in sight.

I don't feel all that appreciated. He gets irritated . . . . and so do I. This weekend, he is coming to stay with me. I need a break from spending every weekend at his house. If he doesn't act cooperative to try and make the weekend go smoothly, then I fear I'm going to explode.

I've been doing great managing my depression lately. For months, I've been the best I've been in years. Now I feel like I'm on a slippery slope about to slide down again.

I hope you know you are not uncaring or lack compassion if you put yourself first. Your mental health is more important. you cant take care of him if you aren't doing well yourself. most of all, it is not your job to take care of him especially if you are not being treated kindly for it. hook him up with the resources to get care so you can get respite for yourself. find the courage for self care and acknowledging that he is not your responsibility. I am not trying to be coldhearted. it is just that you have to have compassion for yourself as well and it sounds like you are using it all up on him. take care of you. remember, he can only do as well as you are.

I remember your posts about this earlier. I'm sorry that the situation is continuing. Was there anything you did last time that helped you?

I'm glad that he is going to your house this weekend. Maybe that's a sign that he knows you need a break. Weren't you or his daughter looking into some kind of permanent arrangement for him? What happened with that?

Thanks, kaliope. I've made huge efforts to hook him up with whatever home services he might be eligible for. I even called Adult Protection Services to report him as suffering from self-neglect. I got the VA involved, as he is a client there. I got him 3 visits a week. He started to refuse showers when the attendants would show up for shower visits. So he disqualified himself from those visits.

He is not the easiest person to work with. The professionals involved in his care all say that he would be in a nursing home if he didn't have me. That's not an exaggeration. I felt glad that I could help him stay at home where he wants to be. I know I have the option of telling people that it is too much and I can't continue. I don't feel like it is to that point yet. Yet I feel so demoralized.

At times, when he is not cooperative . . . like with hygiene issues . . . I almost am ready to threaten him, but that's not right, either. He has no family nearby. One adult child is flying out to visit soon, and I don't know how to make the most of that opportunity. I just get worried about how to entertain that visitor.

He has some slight dementia, so I'm not always sure he even grasps what's going on.

Rose I have seen you give others great advice pretty much in your same situation, So you know something has to give , yes easier said than done..

I do know that you can get respite care where he goes to a nursing facilty for X days, Just so you get a damn break, While he is there they will determine if Physical Therapy could be helpful to him, but a Social Worker is going to look at his whole situation and help determine if going home is the best thing for him and or you. You dont have to handle all this.. What if you become sick ?

Yes you care thats a given but I think I see your feeling guilt over this.. Guilt is not good for you... I would think he would easily meet the needs of a retirement facilty.. Help would be there when needed and you can go visit all you want to.

Please dont let yourself feel trapped

Rose, you have been so good to this man, but, when you got away from that and came to the East Coast to visit family, you felt so much better. Do you understand what that means Rose? It means you need to be away from this constant caregiving situation because it is "draining you" in every way.

The condition of this man that you are discribing means he should be in a home now Rose. Your devotion to him has become "codependent" Rose and that is just not good for you. You are very strong minded and "loyal" but, you have to be loyal to yourself too.
When his child visits him you need to be honest about how he is too much work for you now. This "no end in sight" is just not fair to "you" now Rose and if you are ready to "explode" you need to pay attention to that, that is stress building up in you, not good for "your" health and well being Rose.

If you need permission to take the next step, I will say to you, please take the next step, you "are worth it". Your being ready to explode is your body and mind telling you this stress is too much now on you.

(((Caring Hugs)))
OE

Hi hvert. I did get him set up with some visits from home attendants. That kind of got screwed up lately. Part of the reason is that he did not use the visits as intended to get showered. So now the VA won't pay. I can understand that. Also, the agency that sends the attendants changed from having someone steady come to having different people coming. They don't do much, and most everything ends up back on me.

Hi Christina. He would easily meet the criteria to be placed in a long term care facility. He dreads that. I love him enough to want to help him avoid that as long as possible. Through the VA, he's been evaluated every which way. They have offered him the option of going for day care two days per week. I do need to look into that. He says he's not interested, but he was willing to go at least once to just see what it's like. I kind of know what that is like, and I highly doubt he would go back a second time. (I used to work in a place that provided elder day care.) But I do need to at least visit the place and make him stick to his commitment to, at least, try it one week.

He is here with me this weekend, and it is going pretty well so far. My feelings do get confused because I would miss him, if he were in a nursing home. Yes, I could and would go visit him lots, but we wouldn't have the private time together that we do enjoy. We had a nice evening just now watching movies. Once you are in a nursing home, there is a limit on how many hours per month you can leave the facility, without losing eligibility to be there. He would go in on Medicaid and that can mean not the nicest of conditions. This is something I know a lot about, as I've worked in nursing homes for years. He'ld be sharing a room with a stranger. He wouldn't have his own TV. He'ld probably fall trying to get around in a strange environment. He wouldn't like the food. (I'ld be bringing him food everyday.) Every elderly person should have what he has in me. Of course, I won't have that, myself, when I'm older.

Hi Open Eyes. I did get a boost when I went back to see family in the Spring. I've felt better this summer than the 3 previous summers. I've felt that I was really getting on top of my depression. I've been keeping both our apartments up really nice. I feel organized. For some reason, I've just gotten demoralized . . . partly over his not cooperating with the home attendants. One of his adult children is coming in a few weeks to visit. I'm already stressing out about "entertaining" her. I just hope she will grasp where he is at. If he fails much more, I may have to ask her to intervene. She would be the first one to tell me that I don't have to do anything at all that I don't feel up to doing. In the past, his adult kids have pretty much let me know that they don't see anyone holding a gun to my head and that I should just do whatever I want. I see their point.

I really appreciate being heard by my peers here at PC. It's like I don't have any other direction to go in to express what I'm going through. Today went fairly well, so I guess I'll just keep taking it one day at a time.

((Rose)),

I think you just need to have someplace to vent and weigh everything out. Being a caregiver as you have been is very stressful and draining and as you already know, having an outlet where you can get a break from it is very important. I have noticed you are a very loyal and responsible person Rose, my concern has been that you make sure you take care of yourself too.

What is helpful is that you step back and think about what you would advise a woman in your position where you are thinking of that woman's well being and not just the person she is helping. You have always been a kind of caregiver in your life Rose and you have been a person that has always wanted to do it responsibly too. But, you have to make sure that you are also seeing "both" people in this scenario too, which is why you need to step back and consider what you would say to a woman in your situation.

Hi Open Eyes. Thanks for the kind words. Today went reasonably well. Tomorrow he'll probably want to go home.

I had been staying with him for 3 or 4 nights a week. Lately, I've been going by his place to do what needs doing . . . and then going home to my own place, where I am feeling like I need to be.

He does do nice things for me . . . likes to buy me little things. Also, he has been giving me a little money every month which does augment my social security. It's nowhere remotely like what he would have to pay someone to do what I do, but it kind of makes me feel like I have a job, which has been kind of good for me.

I wish we would go somewhere once in a while. I think tomorrow I'll try to talk him into even just going for a ride to look at scenery. He gets so bored sitting in front of the TV set all day. I'll have to make a little plan tonight. I can probably push him into it. Then he'll probably be glad he got out of his rut.

Tonight I went for a walk around the block. That was a step toward me doing something for me.

Yesterday evening I came home to my place after spending a few days with him. I was very depressed. Feeling like I can't stay with him all the time, but feeling bad when leaving him alone. I told him that I was angry about him giving up some of his home attendant visits and how that created more worry for me. I contacted one of his children about this also. Today, I have felt in despair about his situation and my ability to cope with it.

One of his children is coming in a few days to visit. She'll be flying in from a long distance away. She says she wants us to have an enjoyable visit "doing stuff" like going out to eat. That's all well and good, but I have told her that her dad is pretty limited in the "stuff" he can do. She is a very experienced nurse, and I feel like her main focus should be on evaluating her father's situation and maybe helping figure out what is the best plan at this point. I called her last evening and told her that I am becoming overwhelmed with worry and feel demoralized that almost everything is on my shoulders.

She was on the phone earlier yesterday asking her father where I might like to go eat and what kind of wine I liked. I feel like I have a tough challenge on my hands that I am starting to not meet very well, and I am desperate for someone besides me to be involved. If I get handed some fancy bottle of wine, I think I will want to throw it at someone.

She hasn't seen her father in over 2 years and may not quite grasp how deteriorated he is. If I was mean, I would just stay locked in my own apartment while she is here, so she can see what it is like to take care of him. She plans to be staying in a fancy hotel and meeting up with us for dining out at nice restaurants. I think she needs to spend time with him in his apartment and see how little he can do for himself.

I'm not in need of someone treating me to dinner out. I'm in need of someone getting involved in figuring out what to do with this man. Right now, I'm thinking that I should call the VAMC tomorrow and talk to the home-based primary care department to say that I am overwhelmed and that he has family coming to town. When he was last in the hospital, I agreed to take him home and help him, on the condition that he got some home health care and would not be totally dependent on me. That seems to have fallen apart.

Writing this has helped me a bit. I do think I should call the VA tomorrow. I think they and his daughter and he should get together for some kind of conference. I feel like everyone is getting to evade taking any real responsibility and just leaving everything in my lap.

I kind of think there is really something mentally wrong with me. No one is forcing me to do anything, yet I feel victimized. That doesn't really make sense. I feel like I am mad at everyone concerned in this matter and very depressed. I wish I could just leave town.

I often feel the same way, like I am being forced to do something, part of me wanting to do it because it is right, because I feel sorry for X, another part of me that wishes someone else would pick up the slack, etc.

What I have learned through observation is that other people do pick up the slack. Things get taken care of, maybe not as well as they would have if I was doing them, but they get done if they have to be.

When this daughter gets here, she will quickly see that her father is much worse than she realized. His bad situation has been masked, to an extent, by all the work you've done, so it is understandable that she doesn't know how bad it is.

I like your idea about arranging a conference with her and the VA. I also like the idea of you getting out of town while she is here and coming back perhaps on her last night so she can buy you dinner. Someone needs to!

Another thing to think about - what if you come down with the flu or bronchitis this winter and can't leave your house? What happens to him then?

I think Hvert is right...I think if you are able to step back while the daughter is here, she will then have to take some responsibility for her Dad. I'm sorry, I read all the posts, but can't remember if she is the only child? Even so, this should fall more on her shoulders than yours.
Maybe you can try to start treating this as the "job" that it really is. If the daughter is a nurse, she may earn enough money to help with your pay, bringing it more in line with what it is worth! Is there a way to suggest that to her, probably not without feeling badly, but you really need to do it. Drink that bottle of wine first, if necessary
Big hug for you!!!!

I have worked in nursing homes, retirement homes, hospice, and as one of the attendants that you're speaking of, so I know what it's like for you. Sometimes, it's the caregivers that are in need, psychologically and physically.

When his daughter comes to visit, then that is your time off (I use the word "off" knowing that you want to be there and it's not an obligation for you..).

She doesn't get to be "entertained". She is there to visit her father. And I think it would be a really good idea for family to have first hand knowledge of your s/o's condition.

Perhaps you're looking forward to these few days, but I am of the opinion that you're doing yourself and your s/o a disservice if you don't stay out of the picture.

You can claim an illness, or tell the truth, or go away yourself for a few days (even stay in a local motel). And, even if it bothers you to do so (and I get the impression that it will), be strong and leave them both to it.

Just my opinion.

Thank you, hvert, for your very understanding post. Sounds like you know firsthand. Glad you do get some help. Neither one of us has any family around for thousands of miles. There is utterly no one involved with him but me. He'll say things like, "I almost slipped in the shower the other day and no one was here." That's why I wanted him to only shower when the attendant or myself was there. But he got rid of the attendant who came for shower visits. So, now, he has an attendant visit only one day a week, instead of three. I got so mad over that. We don't live together for years now because, when we did, I became a wreck. He's a recovering alcoholic who was pretty mean to me in the past. Still, after all these long years that we've known each other, I am his best friend.

He has three adult children. Two call him every week. One doesn't bother at all. Over the years, the best I can say is that they are more or less polite to me, but that's about it. If something happened to him, I wouldn't expect to ever hear from them again. When my father died, I didn't get even a sympathy card from any of them. They never call me, except if there is an emergency with him, like he goes into the hospital, which he's done often.

As far as me getting "paid," that's a sweet suggestion, hannabee. Thank you for thinking I deserve that. It would never happen, and I don't expect it. I've never even once received a truly thoughtful gift from his kids. They live very, very well, but they are not the giving type. They feel he is poor because of his past drinking and bad choices, and they just blame him for not having lived his life more sensibly. I can't argue with them there. They got hard butts, but they do know how to get ahead in life, and they don't believe in feeling sorry for anyone. They've told me to "just cut strings and walk away," if I feel burdened.

sophiesmom: I have a similar background to what you have. It gives me the perfect skill-set to help him. As you can understand, it's way different when you don't get to clock-out, after so many hours. He has all the problems you are very familiar with. Thanks for understanding. You're right about how it would bother me to just "leave them both to it." I'm not looking forward to these days at all. I'll be glad when this daughter leaves town. I do tell myself that it is not my obligation to entertain her. I appreciate you reinforcing that. I guess I will do for him what I normally do. She talks about wanting us to hang out at her fancy hotel suite . . . . and how she will order food and wine for us, if he is not so up to going out everyday. She's planned what sounds like a pajama party . . . telling me how she can have extra cots brought in to her hotel room, if we get feeling good and don't want to drive home. As I'm typing this, it's starting to sound crazy, and I can't wait for this whole encounter to be over. Her coming here has become the much bigger stress on me, than taking care of him.

Thank you all for these understanding posts. Maybe, I will call the VA now.

I did call the VA. His VA visiting nurse will come for a meeting with the daughter and me at his apartment while she is here. Maybe this can clear the air a bit.

Sophiesmom: the VA nurse gave me nearly the same advice as you. She told me to tell the daughter I had some appointments and make myself scarce for part of the time that she is here, so daughter gets some hands-on experience with dad's needs. I've got to make myself do it.

I know that part of the exasperation I am feeling with his family is misplaced. It's he who does not have a great relationship with me, and that's why I don't live with him. I can cope with the chores I do for him, but he's often not very nice to me and I come home feeling hurt. If he were a really good guy to me, I wouldn't care what the children did, or didn't do. They can't fix my rocky relationship with him.

The other side of it is that I am not related to him and have no legal responsibility. They are his next of kin. If he is in a home situation that is untenable, the VA and Adult Protection Services have a right to ask for family involvement. (His daughter recently asked me, if I would like to be his legal guardian, and I said, "No thank you.")

So, now I am not as depressed as yesterday and earlier today. The past 6 months were the best I've done in 4 years of trying to recover from Major Depressive Disorder, which occurred when I lost a good job in 2010 and could not replace it. I'm on my own and was suicidal by 2012. This past year, I've improved so much. The past few days have been a major nose dive, and I don't want to get bad again. So I'm okay this evening, and I have to not let myself get set back.

In 2005, I was hospitalized for very serious depression with self-harm. That was when I was still living with him and he was emotionally abusive. I managed to get out of that living situation and it's been a long climb up for me. I've lived by myself for 7 plus years, and, now, I just love being alone. I need to remind myself that this man has little claim on me going to any heroics for him. Living with him just led to me being in Partial Hospitalization for months, by 2004, and in a domestic violence shelter by 2005 . . . then the serious self-harm episode, which I have no history of prior to that, or since. Neither his family, nor mine, knows about these things. I was too ashamed.

Then he got ill and, suddenly, became very handicapped. I found him an excellent place to live, in a handicap-accessible apartment, in a nice senior complex. And I found where I live now, in a different part of town. Over the past 7 years, we have managed to be friends, and I don't mind assisting him. But I'm so glad that I got out of living with him, and I need to remember all that led to that. Lately, I was forgetting a lot of things, just worrying about him.

Maybe, I'm bipolar, as some pdocs have suspected because, after being laid very low the past few days, now, I feel ready to get up and get going. But I have my own theory that my swinging up and down has been because I've tried to make some impossible situations work, and then I have to think my way out of what I am doing that is no good for me. Once I get it figured out, like I think I just did, then I get energy to burn, and seem fine, and get a lot done. (Somehow, I got convinced, in childhood, that I had to take care of other people's problems and could never abandon anyone. That can get me in a lot of trouble.)

So I'll take a shower, and go buy some food for my house, and clean the place up. I'll probably stay up all night cleaning the mess that developed while I was so despondent, but then, maybe, I can go back to feeling okay for a while, like I was doing these past few months, so successfully. I'll listen to music on the Internet, and cook something nice and try to be enjoy how good I do feel, when I am not depressed. Tomorrow, I will drive someplace fun that I will enjoy, maybe along the river, beyond the city, looking at the leaves turn yellow . . . browse in some stores, etc. . . . walk around a little town, somewhere . . . enjoy an ice cream cone, visit a strange library. I can't have my soul held hostage by this man's difficulties.

I really do know how to enjoy myself and not be depressed . . . . but not when I'm entangled in someone's woes that I can't fix by myself . . . . not when I'm waiting for crumbs of warmth from someone who really doesn't think all that well of me. I would love to use my time to do things I like, and I have a ton of interests. I want to be free. Maybe I've been keeping myself shackled in a way I can get out of, if I just make up my mind that my welfare is important, too.

I do understand the difficulties in seeing things objectively when you're totally immersed in someone else's well being.

I STILL encourage you to not be there at all. Including not answering the phone. You know what would happen then....

My heart goes out to you. Take really good care, you deserve it so much.

Jade

sophiesmom: If I did that, I would be hated. Not that there is any love lost between me and my s/o's friends. It's not like I have a lot to lose. But, like I said, we are polite to each other. That's not much, but I would not like to destroy that little bit of civility. And it would be rude of me. Truth is, though, that I have sunk back to being so depressed that I don't know I'll be much good to anyone. Neither my s/o, nor his kids, know anything about depression. They are vigorous, aggressive people who forge ahead and don't second guess themselves. We have little in common. I'll just be glad when this next week is all over with. Then maybe I can let go of the resentment that is devouring me. That is my inner demon. His daughter more or less told me many years ago, when I was whining about the toll this relationship takes on me, "Rose, no one is holding a gun to your head. You don't have to do one single thing that you don't want to do. So just don't. Let go. Get on with your life. Don't make yourself miserable." Is she not right?

Jade: Thank you. That's kind to say. I don't know that I what I deserve. I truly am confused.

Well, my last post above ended with me having talked myself into a good space. The night past . . . . . and I couldn't sustain it. Fell back in the pit. I'm just in tears so disappointed in myself. Did nothing all day. Should go get some food now. Guess I will do that.

Resentment is an awful thing to marinate in. I want to just hide somewhere.

Rose this sounds like a really conflicting time for you and I'm really sorry your finding yourself in the middle of nowhere.

In my honest opinion I feel like you need to be cruel to be kind, no one likes to be the bad guy but sometimes we just have to. You are being emotionally manipulated in many ways firstly he said that he won't have attendants helping with showering but then is telling you he almost slipped and no one would know!! I feel like you need to be really tough and blunt with him "if you want the joyous freedom of living in your own home then you will accept all help offered from all services, I will be going away when your daughter is here so she needs to take control"

I think your doing an amazing job and I tip my hat to you mam if only the world was filled of more selfless loving people as yourself

Well, that was really nice to hear, Teepee. I am indeed so conflicted that I feel like I am about to become completely unglued. Thanks for grasping. It's like I have an ocean of resentment inside me. And, right now, I feel like I am the bad person to be like this.

The suggestion that I go away (or say that I am) and leave this man and his daughter to do whatever they can figure out is like a fantasy I'm having. But I'm hearing from multiple persons that I should consider really doing it. But to me it still seems like a spiteful fantasy . . . . something that I could never do, unless I am willing to see what bonds I've had with this man for 30 years get rent completely apart. It seems like one of those steps that there is no coming back from . . . . . that could result in him and his family being furious with me and labeling me as the worst snot in the world.

I realize I'm at an impasse, mentally. And I will have to chose to do something. And, if it's a hard choice, no one can change that for me, or tell me there's some easy choice I can latch on to.

I just talked to the Caregiver Support person on my friend's healthcare team. Can't say that it helped me. I do appreciate people trying to help me see my situation in a constructive way. If possible, I need to turn my attention off this whole matter and just do something satisfying with my day . . . . . because I'm just obsessing in a very unhealthy way.

It's like I don't even believe that he really cares for me, but is just glad that I'm around to meet his needs. I just feel so mad at him and his adult children and this is pretty childish.

Just talked to his daughter, and I feel better. I tell her this is getting too frustrating for me, and she tells me to take care of myself and it sounded kind of good, so I feel less mad.

I guess what it really boils down to is that I don't feel loved, cherished and appreciated. Not by him, not by his kids. So I get mad. Better to just decide that I need to get less involved. When you're in a lop-sided relationship that feels so unfair, maybe the thing to do is step out of being that deeply involved. That's really the only thing that is going to make me feel less like a victim of unfairness.

There is no law of the universe that says that people have to reciprocate. They are who they are. Being mad that they won't be different toward me is a recipe for me making myself crazy. I am going to let this daughter do a bit more about getting her father ready for what outings she has planned. I'll be picking her up at the airport and bringing her to her father's place, so she can pick up her father's car. Then, when she says let's get together at such-and-such a place, I'll say, "Okay, I'll meet you guys there."

That this man fills a need in you, I have no doubt. But I think it's a need to feel needed, and while you may recognize that, it's the very same need that's, basically, sucking the life out of you.
I applaud your efforts and I most certainly understand your conflict. But, speaking from a purely objective standpoint, personal fulfillment should ADD to your life, and this is SUBTRACTING from it.

As far as his daughter goes, she's probably in denial of both how difficult it is for you, and what the day-to-day care is like for her father.....Let's face it, she goes home after soothing her conscious with a visit to dad. I am not speaking badly of her, but that's what these visits are for family.....a way to assuage their guilt and reinforce their denial.

Please don't think harshly of me and I'm sure that there are some families who are truly dedicated, but I've seen too many "Christmas" visits that last an hour and listened to too many explanations along the lines of "I simply can't deal with it, you understand"....

And I TOTALLY get the resentment. It's a thankless job, whether you love him or not. It doesn't make you a "bad" person, it makes you human.

Rose, what I see in you is that you are the kind of person who simply must do "the right thing", even at the expense of yourself. You are extremely loyal to the cause, which in this case is seeing this man have the best case scenario and you feel that if you take care of yourself you are "failing".

I think you are torn because a part of you wants his daughter to see the reality of how bad he is and the other part of you feels you should "help him" appear better than he is when his daughter is here so "he" is happier with her visit, instead of being embarassed about how bad he is.

Her telling you to just walk away? Well, that is what she did, she had a life in spite of him and his issues. I think a part of you would have liked to have done that, but you are too loyal of a person. No one ever really thanks you for taking care of him, not in an appreciation that would be "nice", it's cold and ill mannered how you get treated. It is like sitting at a table and being the only one with good table manners, no one appreciates your good table manners and you don't say anything because they just don't know how to have good table manners.

The truth is Rose, he is so bad now he should be in a home. You have been trying to give him the best quality of life which is him enjoying his own place for as long as "you" can keep helping him do so. If his daughter really does see how bad he is and does have to be a "caregiver" on her visit, you know what she might just do, take charge and put him in a home. I think you have been trying your hardest to prolong that, it would even be better in your opinion if he just one day passed in his own home. However, he could linger for so long you just might not endure it and he is making it harder on you by dismissing help to give you a break and then punishes you emotionally by saying he took a shower on his own and almost fell. Well, that is "mean", but you always find a way to be forgiving, saintly so.

Rose, if you are waiting to be appreciated somehow for trying to be caring and do the right thing which you feel is letting a person stay in their home as long as possible, unfortunately the only one that will recognize that are others who "do" understand that, not these individuals.

That is hard, I hear you on that one.

Hope you are feeling better today Rose! Big Hug!

I know this probably sounds silly Rose, but have you seen the latest Issue of Oprah Magazine. Numerous articles about care giving... it might bolster your self worth to know How Amazing You Are and How Much You Are Admired Here on PC for being the person you are.
I wish I could lend a hand, give you a break....cranky sick people are truly a drag on us. I can totally relate...MANY HUGS TO YOU