Burned out and depressed.

Threadbare · May 15, 2019, 11:15 AM

Quote:

Originally Posted by DechanDawa

I've been following this thread because I just came back on to PC for a day and wanted to check in on how you were doing. I have been following your story for a long time. I read part of this thread and then had to go out and I thought about you a lot while out. We are probably around the same age give or take a few years. I am divorced and live alone. I am not in a relationship. Frankly I could not do what you are doing. I mean I could do it if I had been married to a guy for 30 years...but someone I met much later in life? No, I couldn't do it.

What would I do? I guess I would bail. It's ruthless. Well, it's a moot point. I don't date and I have no interest. I had one last wild fling with someone much younger (so, a lot of sex) and that was it.

To me you sound severely, severely, severely depressed. I am pretty depressed myself but for different reasons, mostly financial.

You try to control your moods with meds but they only work for a few hours. You are always exhausted.

Also, and you know this, you aren't getting the respect you deserve for what you are doing. Frankly I don't know why you stay. I do know about being far from home. I am kind of in exile. But I have been away too long and would never be able to fit into the socially backward town where I was born. I thought about returning but frankly, I think exile suits me better.

I think you are exhausted, bored (I mean what you are doing is tedious) and frustrated. You are angry, too, I think. Sad. And just insanely depressed. And so so so so so isolated. You don't have family nearby. He doesn't either, it appears. That is such a tough situation. Why has all this fallen on your head? This is just why I am not interested in dating. Even if someone was healthy now...it could turn on a dime. Heart attack. Stroke. Etc. No thanks. I am not interested in being someone's lover for two years then his caretaker for ten. I think this is exactly why Jane Fonda walked out on that nice man she was with when he got Parkinson's. She didn't want that life. She knew herself.

I think you are staying in the situation because you feel it is the right thing to do. Well, you are a better person than I am as I am sure I would have walked away long ago.

What to do? Well, I know depression and it has had a similar affect on me. I sleep. I let things get messy. But I feel much better when I make lists and do things. I mean, like you, I used to be almost OCD about cleaning. Now I let things get messy. When you described your apartment I had to laugh. You could have been describing mine! I have clean laundry in piles not put away. Paperwork strewn about. Dishes piled up in the sink. I mean it isn't like those horrible houses you see on reality TV...but for me it is way, way below my standards.

Just so you know I think this happens to a lot of people our age. A lot of people struggle. Not all. But a lot. I struggle with social isolation. It's a terrible situation. But when I think of you...you are with someone...yet terribly isolated. I mean the guy should be paying you for your time, boyfriend or not. You aren't married. He is getting round-the-clock care from you. You should be getting compensated. It's seems terribly unfair and imbalanced. But I think a lot of people are in your situation. I think maybe people consider divorce...then one gets sick...and the other gets stuck.

Thinking about you has me thinking about myself. I think I am going to start keeping lists and getting things done. And also start doing extra things like exercise, even if just walking. More moving around. Going out. Planning. For the future. My future. My projects. Like language study. Writing. Part-time work. Moving to a more suitable apartment. Just improving my life.

I hope you will see that you need to take care of yourself for your future. You can't allow yourself to be totally used up. You are an intelligent woman, with potential for a much more expansive life than you are now living. This is just a chapter. Or maybe a book, haha, but it will end.

I feel badly this person you are caring for does not show you more respect. But a lot of ill men are like that. My father was awful. My sister (a nurse) and I catered to his every need and my father was just awful. Never appreciative, grateful, or thankful. Just always with an overblown sense of entitlement. I got to move as my then husband found an out-of-state job. My sister stayed and got very bitter and eventually she abandoned my father, which, frankly, he well deserved. And...I might add...he didn't care who he was bossing around...a daughter, a relative, or paid help. He just abused everyone.

I am not saying your guy is abusive...but the situation itself is harsh and abusive.

My heart breaks for you.

And I want to improve my own life. I am pretty depressed myself but I don't like the way I am living. I need to change. I am not taking any medications. I constantly crave something that will change my mood but I don't drink and don't take any medications. So my mood only gets changed by sleep...which, frankly, I adore. I have no problem sleeping. I love it. I take care not to sleep over 8.5 hours. But when I sleep I sleep deeply. It's like medicine for me.

I think I am going to start going to my local recreation center. I love to swim. I love the suana. These things would help my mood, I am sure.

Best of luck. It seems like a lot of people here on Psych Central care about you. You have a certain something. You are special. I have always got that vibe from you. All around you are a better person than me because I couldn't do what you are doing. That guy doesn't know how lucky he is to have you in his life.

Rose,
Take the time to read Dechan's post a few times if you can. I'm a newbie, and stumbled into the Depression tab, then your post, then this reply. I feel it sums up a lot about what perhaps many experience. The fact Dechan so eloquently writes a short film-like narration of the life Dechan leads, I can feel myself in that movie, on that set, complete with all those feelings.
Depression is awful, Getting the moment to see how it affects one person is very powerful. I actually feel a little uplifted from my own depression. It's a temporary feeling, but I will try and savor the remnants of light I got from reading the story.

Rose76 · May 15, 2019, 01:22 PM

Thanks, Threadbare, for reposting DechanD's post. I feel believe this is the first time I'm seeing it. Really. It's not a post I would forget, if I had ever red it. I must have missed a page on this thread. You've done me a great service by reposting this.

Dechan - you understand quite a lot. A real lot. One correction, though: I didn't meet this guy later in life. We met April 15, 1984. So there's all that history together . . . all that shared experience. Just 4 years after we met, we moved thousands of miles away. I never had kids. He's been pretty much it. Like you, I decided I have no interest in finding another guy, when this one is gone. I decided that over 10 years ago. At that time, I thought he had only a few years left. Then I would do lots of things like you mentioned. I'd take a course, swim, tend my little flower patch, look after my bird feeders, maybe get a dog. Friendship means much more to me now (if I had the time for it.) I'ld like to do things with others. I have a girlfriend who's good company and alone, like me. Right now, I meet her for lunch or dinner about every 6 months.

People give me advice: "Take a yoga class." "Go swim at the YMCA." "Just go for a walk." That's all great advice. I tell myself all the same things.

Dechan, you do understand a lot. It means something to me that someone can acknowledge my "plight." I know it is all of my own making. I know I'm not doing more for myself that I could do. I do feel like I'm just letting myself be "used up." . . . . like, when he's gone, I'll just be a shell, an empty husk of an aging woman. It does seem so unfair. I did the "respite" thing. I'ld go to the nursing home and find him dirty, sitting alone in his room, being tormented by the yelling of a patient across the hall, who yelled a l l t h e t i m e. He came home with what seemed like worsening dementia. It was just the stress of being in a facility. After 3 days at home, his mind was greatly improved.

He's got no money to pay me with. I handle his income and bills. I can do what I want with his money. He's what the federal government classifies as very low income. I do get to eat for free, which saves me a few hundred dollars a month. We eat very well.

I appreciate all you say . . . . . just that you recognize and understand. It means a lot. I'm not trying to have people feel sorry for me. Maybe, in a way, I am. I vegetate here like I'm shell-shocked. But it keeps seeming like he's just got a few months left. So I figure I'll stick it out. 12 years ago I thought he only had a couple of years left. Doctors tell me he should be on "hospice" and that I should stop bringing him to the ER. But I'm not going to neglect him to death (and I could.) I get him appropriate care whenever he has an infection, and he rallies. He wouldn't get these medical interventions without my advocacy. A doctor stated that. He'ld be given some ineffective oral antibiotics for an infection, which he would succumb to. That's how many of our elders die.

People like George H. W. Bush and Rose Kennedy didn't live such long lives in their wheelchairs, just because they've got the right genes. The genes help, but they were promptly treated for every ailment. Pres. Bush had pneumonia after pneumonia. If he were anyone else, he would have expired after the first couple of bouts of pneumonia. But his family adored him and they hired the right people to make sure he got treated promptly for everything. Most frail, old people don't get that. Even if they have loving families. For one thing, most people can't afford private nurses around the clock. And even those who can will tell you that "it's hard to find good help."

Maybe I sound like I wish he would die. At times, I do. At times, that is exactly what I wish. But, a few hours later, we'll be having a nice supper together and watching something we enjoy on TV, and chatting . . . . . and I feel like I want to hold on to him long as I can. I will never be this important to anyone again in my life. I will never matter this much again in my life. In his own screwball way, he does love me. I will never be loved so much again. I will never be special to anyone again to this degree. Sure - I can be the visiting aunt to family who put themselves out for a few days, while I visit. Yeah, I can volunteer my time to a worthy cause. I tell myself all that stuff too.

Yet, when I am alone, if I manage to outlast this guy of mine, I think I will be alright. I just hope I have a few healthy years left to spend doing things that interest me.

Thank you for understanding and for sharing your own experience, which is not so different.

Mopey · 04:56 PM

Rose, I am so glad you’ve found this rapport with Deshan. It means so much when you feel that someone truly understands, even though the basic situation may remain unchanged. I've found much value in reading her posts, and the posts between the 2 of you, myself.

I continue to care very much about your situation myself and will continue to monitor it.

Wishing you both well... 🌹

Rose76 · May 15, 2019, 09:40 PM

Thank you, Mopey.

I'm awful low this evening. Just in the bedroom by myself, crying in frustration. I have been doing this total care of this man for so long. I was okay around lunch time. I was being nice to him. Then over a few hours I was alone in the bedroom, while the attendant was looking after him. I went downhill. I had some cheesecake and sherry, and I got down. Very down.

I have wide mood swings. One pdoc told me years ago that I was "bipolar." I am emotionally troubled all my life. I have very good intervals. But I am recurrently depressed. Feeling good doesn't last. Feeling bad doesn't last. I go back and forth and back and forth.

It's not like bailing out of this relationship could be counted on to fix a lot. I'ld still be so worried about him.

This morning we quarreled. I wasn't totally in the right. But he seems to have so little concern for me telling him I feel very distressed. He gets what he needs out of me - every thing that he needs. I get so little for what I give.

I am just making myself more upset and more blue.

When he's gone, I'll have to empty out his apartment and that will be a job. I can probably donate a lot, as a way of getting it carted off. Some nice furniture. Then I'll have to move my stuff that's here to my apartment that hasn't been really lived in for a few years. That place is kind of a mess. I did used to keep an orderly house. My involvement with him undermined that. In '94, I left him and was doing okay. I had my own place that I liked, that I kept nice. 5 years later I got all involved with him again. My life hasn't been orderly since. I can't blame him for all that either.

I know being down passes.

Rose76 · May 16, 2019, 12:38 AM

I wasn't intending this to be an on-going, perpetual blog, but I don't really have anywhere else to go, pathetic as that may sound.

I took one of my Vicodin tablets (10/365.) My neck is sore from reading. Also, I was hoping for a mood boost from it. That makes just 2 that I took all day today. I don't go nuts with this stuff.

I gave him hot dog and beans for supper and I didn't eat with him like I always do. I've stayed in the bedroom feeling bad. He seems to be doing okay out there by himself, watching TV. Usually, if I'm out of his line of sight for more than 7 minutes, he calls to know where I am and what I'm doing. This eve he knows I'm staying in the bedroom because I'm upset with him, so he's not calling for me, unless he needs something specific. Then I have to respond because he can't walk. His way of handling my being upset is to just wait for my negative mood to blow over. So he is just not trying to interact at all. That makes me even more mad.

He never, ever, ever says "This must be a lot on you." or "I'm lucky to have you." Everyone asks me if he knows how lucky he is. I have no idea. He's not one to worry. He lives in the moment and enjoys what is going well in the present. He doesn't reflect on how things might be different, for better or worse. What is - is. That's that. He will acclimate himself to whatever he can't change and that will be that. Warnings that I might leave mean nothing, absolutely nothing. He'll just say, "Okay then leave. Do what you want." His equanimity is not going to be rattled by any threat from me. And I have no business threatening him. Sometimes I get more mean than I have any right to be. I keep wanting him to be different. How ridiculous of me.

An awful lot of the time, I'm fine toward him. More than fine. Morning, noon and night - attending to every need and doing so in pretty good humor. And he's generally quite pleasant himself, living in his childlike world, very pleased with each good thing that comes his way. He's very positive. Tells me the morning coffee is delicious, when it's just instant. He just wants things to be nice. He'ld actually be quite nice to work for. The attendant seems very relaxed around him. He's always pleasant to her. He generally is to most everyone. I'm the crank. Mostly I'm not. But the quarrel this morning has unsettled me. He is utterly unconcerned that I am unsettled. That's what bugs me the most. Something I want him to do differently he won't do. He will stick to his habits come what may. If I stay upset and distant toward him, he will announce that he's going to do exactly whatever I want him to do. He'll say that so sweetly, and he believes he means it - in the moment. But he will do nothing that isn't exactly what he wants to do . . . absolutely nothing.

So I can arrange another "respite" placement. But then he deteriorates in the nursing home. I have to pick from a short list of facilities that aren't the best. Neither the VA nor Medicaid is going to pay for a stay in the nicer nursing homes.
(Even the crapholes cost over $2000/week.) Then my hard work of keeping him in good shape gets undone. So, after the respite, I get him back in worse shape.

So I want us to stay together as we are, but for him to go along with a change I want him to make that would be good for him. (I want him to stop sleeping sitting up in a chair in the living room. I want him to sleep in a bed. We have a normal large bed, and we have a hospital bed. But he sleeps in a chair. In the hospital or nursing home, he sleeps just fine in a bed. But not at home. I find him slumped over in the chair every night. Maybe it shouldn't bother me. That was the quarrel. I can't stand it. Maybe I'm wrong. But I don't care. It upsets me. He doesn't care that it upsets me. That's what really makes me nuts.) He won't budge. He-'ll do what he wants. Nothing I can do about that . . . . except to leave, if it bothers me that much. I hate that those are the two choices he gives me. I just hate it.

Maybe I'm insane that I so want him to do as I ask. But I can ask till I'm blue in the face. He won't even talk about it, or give me a reason. And he doesn't care that this bothers me terribly. Thar's my problem. What bothers me is none of his concern in the slightest.

Rose76 · May 16, 2019, 04:18 PM

I'm still in my very down mood. By tomorrow, it will probably blow over. But today I'm down. Mainly I'm resentful of him. Years ago, when we lived together, he said we should get a dog . . . that he needed a dog for companionship. He'ld had heart trouble and believed he'ld never work again. We got the dog. Then his health improved and he decided to take a low paying job. The dog couldn't be left home alone. I had a good paying job, working 12 hr shifts that sometimes went longer. The dog was a problem. He told me to get rid of the dog. I couldn't do that. I turned down assignments to take care of the dog. I gave up good wages so he could go make peanuts. This went on till I was becoming a mess. Eventually, he got sick and was home. Soon as the dog died, I left him again to get the apt I have now. That was almost 12 years ago, and I realized I didn't care if I ever was in a "love" relationship again. But his health got seriously worse and we had stayed friends. I ran errands for him, laundry and groceries. Then "mission creep" set in, and now he is totally dependent on me. At times we would get along well. Often we didn't. But we made up easily. I'm retired. My skill set just happens to line up with exactly what he needs. We both live on small incomes. Sometimes I'm very happy being with him and glad our relationship endured. But today I feel frustrated and depressed. I'm not taking care of myself properly, down to even not brushing my teeth in two days. Even when we're getting along well, I don't catch up on what I need to attend to for myself. Even when I'm not depressed, I'm apathetic about making anything of what remains of my life.

I like to think, sometimes, that, when he's gone, I'll just have me to take care of and I'll create a nice little life for myself, for however long my own health holds out. Then I worry that this apathy will stick with me, and I'll just sleep a lot, go downhill and be found someday, passed away in my apartment.

So I'm staying in the bedroom away from him. Now he's calling, saying he wants to apologize. He's tired of sitting alone in the living room. By tomorrow I'll probably get tired if being mad, and I'll go back to our usual routine. That will last for awhile. The cycle just repeats and repeats. I guess that's why I'm apathetic. I don't see a way to disrupt the cycle that will help me.

The only way out of the cycle would be to end this caregiving attachment. I'ld have to find a facility for him, or have a social worker do that. Then close up his apartment. A lot of work in that, but I have to do it eventually in any case. Then my apt is a mess. We've been using it as a warehouse. I have to turn that place into a home again. A lot of work there. The paint's peeling in the bathroom. Where I live, the property keeps changing hands and has gone downhill. It's not like, in leaving here, I would have something nice to go towards. I've let everything become a mess.

unaluna · May 16, 2019, 06:27 PM

We all have our contributions to make. We neednt apologize for who we are.

speckofdust · May 16, 2019, 06:35 PM

Quote:

Originally Posted by Rose76

I'm still in my very down mood. By tomorrow, it will probably blow over. But today I'm down. Mainly I'm resentful of him. Years ago, when we lived together, he said we should get a dog . . . that he needed a dog for companionship. He'ld had heart trouble and believed he'ld never work again. We got the dog. Then his health improved and he decided to take a low paying job. The dog couldn't be left home alone. I had a good paying job, working 12 hr shifts that sometimes went longer. The dog was a problem. He told me to get rid of the dog. I couldn't do that. I turned down assignments to take care of the dog. I gave up good wages so he could go make peanuts. This went on till I was becoming a mess. Eventually, he got sick and was home. Soon as the dog died, I left him again to get the apt I have now. That was almost 12 years ago, and I realized I didn't care if I ever was in a "love" relationship again. But his health got seriously worse and we had stayed friends. I ran errands for him, laundry and groceries. Then "mission creep" set in, and now he is totally dependent on me. At times we would get along well. Often we didn't. But we made up easily. I'm retired. My skill set just happens to line up with exactly what he needs. We both live on small incomes. Sometimes I'm very happy being with him and glad our relationship endured. But today I feel frustrated and depressed. I'm not taking care of myself properly, down to even not brushing my teeth in two days. Even when we're getting along well, I don't catch up on what I need to attend to for myself. Even when I'm not depressed, I'm apathetic about making anything of what remains of my life.

I like to think, sometimes, that, when he's gone, I'll just have me to take care of and I'll create a nice little life for myself, for however long my own health holds out. Then I worry that this apathy will stick with me, and I'll just sleep a lot, go downhill and be found someday, passed away in my apartment.

So I'm staying in the bedroom away from him. Now he's calling, saying he wants to apologize. He's tired of sitting alone in the living room. By tomorrow I'll probably get tired if being mad, and I'll go back to our usual routine. That will last for awhile. The cycle just repeats and repeats. I guess that's why I'm apathetic. I don't see a way to disrupt the cycle that will help me.

The only way out of the cycle would be to end this caregiving attachment. I'ld have to find a facility for him, or have a social worker do that. Then close up his apartment. A lot of work in that, but I have to do it eventually in any case. Then my apt is a mess. We've been using it as a warehouse. I have to turn that place into a home again. A lot of work there. The paint's peeling in the bathroom. Where I live, the property keeps changing hands and has gone downhill. It's not like, in leaving here, I would have something nice to go towards. I've let everything become a mess.

Just a comment on your statement, "I'll just have me to take care of and I'll create a nice little life for myself." If at all possible, make that your mantra. Spend time each day thinking about what you want to do, now and down the road. In the future, one way or another, you will be able to create that nice life for yourself. It can be helpful now, today, this minute, to at least think about (even better, if you can muster some energy, write, draw, talk about) what that looks and feels like. If you meditate, this is a good thing to add to your positive visualizations.

Rose, I write this to you as a person who spent 12 years living with and taking care of my mother. The last 2 years that I lived with her were especially difficult because I did 90% of what needed to be done for her. I never spent time thinking about what my life could or would be like once she was deceased. I wish now that I had, because I'm struggling, even 18 months after her death, to figure out, and have energy for, creating my own nice little life. I'm getting there, but i think if I'd started on it earlier, I'd be much further along, even with the challenges of depression, anxiety, burn out, and physical ailments.

I wish for you peace and calm in the very near future! You do you, boo!

PS - I believe that writing about your experiences and feelings on this forum is a good outlet. Just be sure to incorporate other outlets into your routine. Everything in moderation....

unaluna · May 16, 2019, 07:26 PM

Rose, i really liked what you wrote yesterday or the day before about being so important to your partner. It reminds me of The Little Prince, at the end when the prince is talking about taking care of his petulant little rose. You never expressed these feelings before.

Rose76 · May 16, 2019, 11:15 PM

Speck - I do spend time daily, thinking and visualizing. It would be wise for me to start going back into my own apartment and cleaning and straightening it. When I got my s/o qualified for full Medicaid, which funds the attendant, I thought I would be able to spend part of the week - even just 2 days and 1 night - in my own place. That turned out to be a fantasy. He can't be alone at night. Medicaid pays very little to attendants. (The skill level of these attendants is commensurate with that.) I'ld stock the fridge at my apartment and end up throwing the stuff out. He has gone from one medical crisis to the next. If he were really rich, he might appropriately hire licensed nurses around the clock. That's the level of attention he often needs. These type of attendants call out all the time. This is where having real wealth when you get old and sick is what it really takes to get truly great care (if you can find the right help) or being surrounded by a big, family of persons who love you to pieces and have lots of time they can devote to you.

All that being said, I have no good excuse for why I don't spend a few hours hear and there readying my own apartment for when I need to return to it. I do not claim that I am depressed because I can't do anything about my circumstances. I know it's the opposite: I don't put enough effort into bettering my circumstances because I am depressed. I have said I'm not looking for praise or pity. My life is exactly what I've made of it. I guess I do this thread to kind of think out loud. If someone endorses me when I say something that makes sense, that may help.

I'm very experienced in dealing with depression, since about age 8. I long ago figured out what it takes to make one's life better: You get up and do what needs doing, and things improve. OR - you vegetate passively and watch things get worse and worse. That's the secret of living life successfully in a nutshell. I know that.

Unaluna - I've put down here very conflicting feelings. I appreciate you noticing the things you noticed. It's not a simple situation. Like: he's disrespectful and abusive, and I ought to just walk away. It would be easy, if that was what all is going on. I have walked away. That's how I came to have my own place. I never married him. (I could have.) I kept one foot in and one foot out. He met a lot of my emotional needs. We have happy, shared memories. I found, and still find, contentment in our closeness. My feeling are very mixed.

Time will pass. Eventually, he'll succumb to the ravages of his multiple illnesses. I'll be free to do whatever I like. I have many, strong interests, so I should be able to pursue various of them and my life will go on. There are some folks who'll be glad to see me, when I have the time to renew old attachments.

Today I coped poorly with being depressed. Tomorrow I may do better. Eventually I will do better. That's how it always goes.

Anyone whose time can be better employed than looking at this thread should do exactly that.

Mopey · May 19, 2019, 01:52 PM

Rose, it seems to me that you have two separate issues you are dealing with. When I first started reading this thread I thought everything was situational. That is, your difficult situation with your bf. And that is a toughie. I can totally understand why, because you really care for him, you can't just let go and see him go downhill with the inferior care he'll get in a facility.

But it seems to me you have a separate issue, too, which is your own depression. It seems as if you're constitutionally unable to enjoy doing anything for yourself, as if it's somehow a sin. I mean, it's OK to turn yourself inside out making life as good as possible for your bf, but to do something for yourself - well - it's not only unimportant, it's somehow wrong.

Those are really two separate issues, seems to me.

Meanwhile wishing you well and reading your posts in this thread.

unaluna · May 19, 2019, 01:59 PM

Mopey, i guess thats why i can relate to rose, even tho our current life circumstances are different? I was consumed by my job, until i wasnt. But theres a way of looking at life that is similar.

Rose76 · May 19, 2019, 03:49 PM

Yes, I have my own "sickness" to deal with, as well as his. There are 2 problems that would each exist, independent of each other.

Rose76 · May 19, 2019, 07:09 PM

My problem is not primarily situational. I think people with depressive tendencies have a penchant for getting themselves into lamentable situations. It gets to be like: "Which came first, the egg or the chicken?" Yes, I'm in a trying situation. Lots of people are. Lots of people cope. Contributers to this thread have taken on responsibilities that were tough and managed to cope. I've managed to cope with this caretaking role for a number of years.

Maybe I'll decide I can't continue. That option is open to me. Sometimes tough choices have to be made. That's life.

Even if I didn't have this man in my life, I'ld still have recurrent intervals of being depressed. That pattern was established long before we met. A mood disorder - I believe - becomes "hard wired." Then it's a chronic problem that, at best, can be successfully managed, but not eradicated. It's part of who I am.

I could have started this thread in the "relationship" forum. I'm here because I know my biggest problem is my tendency to get demoralized and want to give up. I'll be wrestling with that till the day they plant me. Life didn't cheat me and doesn't now. But life is hard. Living successfully is hard work. I'm avoiding doing a lot of the work. Because I just don't want to. I'm just not in the mood. Success in life comes to those who keep plugging away regardless of moods that come and go.

Being alone is unhealthy and not how humans function best. Being caretaker to an invalid can be isolating. It has become so for me. And me being in this role has lasted longer than I, or anyone, expected. Doctors and other professionals at the VA keep telling me that. Same with his family. They all came out months ago to say "final" goodbyes. The palliative care nurse who visits even said to him, "You've got everyone scratching their heads because you just won't die." I found that an odd thing to state so explicitly, but she's not alone with that thought.

Now, after 5 p.m., he's fully waking up . . . after seeming semicomatose on and off all day. He's watching TV alertly. All day he couldn't hold his head up or converse. That changes every evening. Same with me. I'm prone to morning depression. That's why I went to a pdoc for Ritalin, which was kind of helping. I ran out. Pdoc won't order more till I see him. I didn't know how soon he was wanting me back. So now I have an appt for early July. The pdoc's got to make a living.

I don't write in this thread because I feel I have a fascinating story to tell. Anyone can be forgiven for deciding that 17 pages depletes their capacity to take an interest. I don't know if I could listen to someone like me for this long. But PC members continue lots of threads beyond 17 pages . . . or they start thread after thread in close succession. Typically, they don't resolve their problematic situations any better than I've done. If there's one thing that I've seen here at PC, it's that the main trouble with chronic problems is that they're c h r o n I c. Living with psych issues is an ongoing story of improvement followed by relapse. I saw that pattern when I worked at a rehab facility for substance abusers. They kept coming back. I asked a doctor there how likely was it for anyone to get better? She said, "We have to redefine our notion of success." She said that "intervals" of doing well are successes, even if they don't prove permanent. She said we have to be glad for periods of remission. At AA, no one ever says, "I used to be an alcoholic."

I think what's wrong is that I haven't had a decently sustained period of remission in way too long. That may be situational. Neither has my guy. A "next" hospital admission is always right around the corner. I've already lost count of how many hospital admissions he's had in 2019. And it's now year upon year upon year that we've been doing this. It happens to others, but not usually this late in life. Families go through this with chronically ill children. My hat's off to them. This is not typical at end of life. The doctors in the VA ER sometimes look exasperated when we show up. That weighs on us also - feeling like we are an unwelcome burden on society.

He lives in the moment and doesn't get depressed. I have to think ahead to what will be needed in the next phase of his illness. Yeats said, "Too long a sacrifice makes a stone of the heart." Or . . . it makes mush of the mind, I'm finding.

unaluna · May 19, 2019, 08:06 PM

Quote:

Yeats said, "Too long a sacrifice makes a stone of the heart." Or . . . it makes mush of the mind, I'm finding.

Um - good alliteration, Rose, but, as comedians have told me, dont quit the day job?!

Rose76 · May 19, 2019, 10:50 PM

I'm a human being. I'm having a hard time. I've been hurting. I guess my lengthy posts could be condensed down to that.

I guess my too many words distract from my own message.

Mopey · May 20, 2019, 10:41 PM

HUGS (((((((((Rose)))))))))

You're trying your best, honey. You're trying your best.

Rose76 · May 21, 2019, 05:44 AM

Yesterday, Monday, I greatly improved. That happens to me. It's an endlessly and frequently repeating cycle. I am down, down in a trough of despair. Then I suddenly get a lift and recover, and I wonder how I could have been so morose and and paralyzed. Yesterday I cleaned and made a cake and got along happily with my guy. Now I feel like everything will be alright. If only I could make these positive intervals last.

Thanks (((Mopey))) for the encouragement. I was kinda giving up on everything. But I am back to trying now.

Calla lily12 · May 21, 2019, 11:25 AM

Rose, I think of you often. I'm not on PC much any more but I do care greatly.

Mopey · May 21, 2019, 01:17 PM

Rose, did I understand you at one point to say you had been diagnosed bipolar? That you had medication for that? Do you suppose it might make sense for you to do another (more current) psychological workup to see if there's something new that might help with the unexplained mood swings?

Rose76 · May 22, 2019, 12:02 AM

One pdoc came up with that diagnosis. Another said that was too heavy duty a diagnosis for me. Sooner or later, pdocs will try any depressed patient on "mood stabilizers" to see what happens. That's called reaching a diagnosis empirically. "If she improves on a medication, then she may well have what that medication treats. A number of providers tried me on drugs used to treat bipolar disorder. These drugs were not the least bit helpful. Tricyclic antidepressants help me a real lot. I have a new pdoc. He doesn't know me well. My psychy has been worked up to death. What helps me is cultivating better habits. I have a severe sleep disorder all my life. That makes keeping to a daily routine very hard. Also, I am under quite a bit of situational stress.

Mopey · May 22, 2019, 05:31 PM

Well, good. I'm glad the tricyclic antidepressants help at least. Obviously you're under situational stress. So good luck with those habits! ((((HUGS))))

Rose76 · May 25, 2019, 05:07 AM

Mon, Tue & Wed went pretty good. I was chipper and keeping up with things. Yesterday, I started going downhill. Friday I barely functioned.

This is not working out. But I look at the alternative. The care he received in 3 facilities (over the past 3 years) was extremely disappointing. That's putting it mildly.

I should, at least, go round and look at some other facilities. It's not likely any of them will be much different. When he was in those 3 facilities where he had short stays, I ended up going in and doing much of his care. Even that is not so bad. I was able to come home at night and be "off duty" till the next day. What is going on here in this apartment I can't sustain.

Nursing home work is becoming like fruit picking and meat processing. Americans won't do it. The licensed nurses are brought from Nigeria. Nothing wrong with Nigerians. The ones we met seemed nice. But my bf could not really understand anything they said. I thought their accent was very pretty. But for a person with dementia, they might as well be from Mars. Unless I was ready to translate and facilitate the interaction, there almost was no interaction . . . just robotic dispensing of pills. This is a nightmare.

What has happened to nursing homes is just awful. No wonder lawyers got those ads on TV all the time. Even immigrant labor is not expecting to work the way people used to work. They've grown up watching TV. Life isn't supposed to be hard. A contractor is doing major roof work over at where I live. The immigrant laborers (Americans don't do roof work.) drink from cans inside paper bags during their breaks. They've got to get half lit to tolerate going back up on that roof as the afternoon Sun gets hot. So it is with nurse's aids. They've got smart phones in their pockets. Changing stained sheets is not their idea of the America dream, which is supposed to kick in soon after they get here. So they leave the sheet to dry and just pull the spread over it. But they're pleasant enough. Nobody's going to fuss at them to try harder.

Have money, when you get old, or don't get old. These chain operated nursing homes are efficient at turning those Medicare dollars into profit. They get over $8000 a month. The aids don't get even $15 an hour. All of the help does, basically, just what they figure they can't get away with not doing. In a business where your customer has dementia, you can get away with a lot.

I didn't think he'ld take this long being this sick. Well, had he been in a nursing home on Medicaid, he wouldn't have been at it this long. So many medical interventions he's gotten, he wouldn't have gotten . . . unless I was there everyday pushing the issue. It's like dropping a kid off in an orphanage.

But the past 24 hours, I barely functioned. I've got to change something. I don't like my options. That's just too bad for me.

Mopey · May 25, 2019, 04:02 PM

When he was in those 3 facilities where he had short stays, I ended up going in and doing much of his care. Even that is not so bad. I was able to come home at night and be "off duty" till the next day.

Do you think that might be a better option for you overall, Rose? As you say, at least you can go home at night and get a little rest. And out of your concern you are at the facility during the day, improving the quality of his care. And you are able to get some rest and recuperation instead of absolutely continuous slogging drudgery.

As to the nursing homes, it is pretty shocking when you find out what really goes on there. I guess, as a licensed nurse yourself, you just know a little too much.

Rose76 · May 25, 2019, 04:46 PM

Yes, having him there, with me showing up to augment his care is an option. I will be looking hard at that option. It worked pretty well 3 years ago, when we did it for 3 full months - to qualify for institutional Medicaid (which qualification he never loses.) I lived in my place that I got all nicely organized. I brought him there every Sunday for dinner and a movie.

His dementia was much less advanced, and he could advocate for himself . . . which, BTW, he did very effectively, when he got sick of an obnoxious roommate and spotted an empty bed down another hall. He now has worsening aphasia and often can't say what he wants. Tie that together with staff who are speaking English as a second language, and they just talk past each other. The isolation it produces for the nursing home resident is just so sad. The resident gives up trying.

Yes, I know too much . . . way too much. And - here's what really kills me - I remember when and where it was better. I spent 9 years in 2 not-for-profit nursing homes (1 run by religious and located nearby . . . . . . gone now.) Were it there still, my boyfriend would be in it. It wasn't swanky. Most residents were there on Medicaid. But it was quite alright. The day I went to see if I might like to apply for a position, I found the Director of Nurses, a nun in white, kneeling in front of a man with his bare feet in her hands. That's gone . . . . . . vanished. We have more regulations. But things are worse. And we pay so much more for it, we tax payers.

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