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Default May 19, 2019 at 01:52 PM
  #161
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.
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Default May 19, 2019 at 01:59 PM
  #162
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.
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Default May 19, 2019 at 03:49 PM
  #163
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.
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Default May 19, 2019 at 07:09 PM
  #164
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.
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Default May 19, 2019 at 08:06 PM
  #165
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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?!
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Default May 19, 2019 at 10:50 PM
  #166
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.
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Default May 20, 2019 at 10:41 PM
  #167
HUGS (((((((((Rose))))))))) You're trying your best, honey. You're trying your best.
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Default May 21, 2019 at 05:44 AM
  #168
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.
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Default May 21, 2019 at 11:25 AM
  #169
Rose, I think of you often. I'm not on PC much any more but I do care greatly.

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Default May 21, 2019 at 01:17 PM
  #170
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?
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Default May 22, 2019 at 12:02 AM
  #171
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.
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Default May 22, 2019 at 05:31 PM
  #172
Well, good. I'm glad the tricyclic antidepressants help at least. Obviously you're under situational stress. So good luck with those habits! ((((HUGS))))
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Default May 25, 2019 at 05:07 AM
  #173
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.
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Default May 25, 2019 at 04:02 PM
  #174
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.

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Default May 25, 2019 at 04:46 PM
  #175
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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Default May 29, 2019 at 01:00 PM
  #176
I want you to know how valuable your “thinking out loud” posts are for the rest of us. I had the morning depression today myself, then got up, got more information on classes I can take (short or long, pricey or not???), arranged to Have the carpet cleaned, etc. After a year during which my husband had 4 leg angioplasties which he leaves to me to research what’s causing the problems and disagree w the cardiologist for example, because he would rather follow his stocks (we’re not rich), I m really burned out and find it really easy to put off my own life.
Your narrative reminds me that you, and the rest of us are IN CHARGE. so thank you,and please consider doing a blog that would help even more caregivers.

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Default May 29, 2019 at 03:15 PM
  #177
Thanks, luvyrself. It is a lot of "thinking out loud" that I do here. It means a lot to me that you find value in my posts. I'm not trying to present a problem for others to help me solve. I don't think there's much advice anyone can give me. I know my options. It helps to feel less alone by getting comments from others, even when they don't have neat answers to the dilemma of trying to manage a loved one's care with limited resources.

Your husband's leg vascular problems sound like a very worrisome situation. After 4 invasive procedures in one year, it doesn't sound like this is something his doctors have a secure handle on. The survival and functionality of a limb are at stake. Then there's pain to deal with as well. Vascular problems in the leg impact the health of heart, lungs and brain - all of which you know from the research you've been doing.

And research needs to be done for sure. It's not like doctors will sit you down and explain a whole lot in depth. Doctors really don't put a ton of effort into educating patients and families. They've changed from hiring nurses to hiring medical assistants (MA's) who are not qualified to do much teaching. You have to be online reading a good deal, if you want to have half a clue to what's going on.

I would like to have a blog. I tried to start one once and got completely lost.

Today I'm low. Our attendant quit. The work is getting harder with more lifting. I don't blame her. I barely can move my guy around from one room to another. However. even on a low day when I-m doing a half-hearted job, it's way better than he'ld be treated in any of the nursing homes he's been to. I'm tired. I have a dental issue I'm not addressing properly. Burn out is real and self-neglect goes with it.
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Default May 29, 2019 at 03:40 PM
  #178
It looks like soon I may be about to lose my battle to keep my boyfriend from ending up in a nursing home. The grief I feel over that right now is just choking me. I wanted for him to pass away at home in his own surroundings with me soothing him. When I think about the possibility of that happening with us apart . . . of me getting a phone call in the middle of the night saying they found him expired, the grief of that has me choking back sobs. I've tried so hard and so long to avoid that. I put in so much effort. Life can be so unfair. That's what happened to my mother, but in a general hospital. Staff just found her gone. Family got the awful phone call.

He's had a number of years at home that he wouldn't have had without my efforts. I guess that's something. But I have wanted to keep him here. I'm real depressed today. Earlier today I heated up one of those bread loaves you take home and bake. It came out good. He and I enjoyed eating it warm with butter. These little things make up daily life that you lose in an "institutional" setting. Maybe, if I cave in to what doctors started pushing 3 years ago and make him a hospice client, that could give me more help to keep him at home. I'm so awfully depressed today. I'm just losing interest in everything.
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Default May 29, 2019 at 04:10 PM
  #179
The problem today is not my boyfriend's care needs. It's my being awful depressed.

He's here, safe and sound. What he needs today I can do. I only have to get through today. I don't really, absolutely have to worry about tomorrow today. Won't do much good. What's dogging me down is that I'm despondent. It's an episode of depression. It will wear off. I'm not getting needs of my own met. Caring for him brings some satisfaction. But I was promised some help. A parade of professional people and bureaucrats are making money off of his illness. Just the other day a registered dietitian wanted to come out for the umpteenth time to counsel us. What a waste of money. He should eat what he can eat that he's able to eat. I'm not a moron. I know what constitutes a nutritious meal. But there's professionals lined up wanting to interact with him and me for big fees. I need help that doesn't gave a degree after its name. Someone to stand by while I go to the store. Never enough money for that.
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Default May 29, 2019 at 05:55 PM
  #180
I’m sending gentle hugs and kind thoughts

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