Burned out and depressed.

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.

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.

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.

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.

I’m sending gentle hugs and kind thoughts

I feel so frustrated that my efforts seem to be getting defeated. Outcomes can't be controlled. They have to be accepted and adjusted to.

He has been sleeping all through the evening news, which is very unusual. I could really have used the company of him being awake. He is not well today.

I don't know what I'll make him for dinner. There is enough food on hand. I really want to run away from everything. I'm just a bad wreck at the moment.

I tell myself a spell like this blows over. The trouble is this one is way worse than the last few. I come out of them and do well for a couple days, but not long enough to really get on my feet. It is not worth living being like this.

So I woke him up and now he's cursing at me. We are 2 people in trouble.

At least he's a presence in the apartment. In the back of my mind, I contrast this with being really alone. Taking him to be admitted to a nursing home seems kind of like a rehearsal for going to the cemetery for his interment. I will return from that to a condition of aloneness that I haven't been in for a long time. Solitude has its merits and I probably do better than a lot of people at enjoying solitude. But involuntary aloneness can be pretty awful. There's no shortage of testament to that across these forums. I really did have more than my share of experience at being alone . . . really alone. It's not just the lack of other human beings in close proximity. It's that, plus the lack of there being anyone to be aware that I even exist. That as a young adult, on top of a childhood full of experiences of being remote from normal peer contact, is a past history that led to me tolerating involvement with a man who had serious problems that made him a troubling influence on my life. From soon after meeting, though, he seemed to have me on his mind an awful lot. To know that you're thought about by someone just about all the time is a powerful antidote to the mental misery of feeling that your existance matters not to anyone. I could see that I was alive and taking up space on the planet, but I might as well not have been born, so far as there being anyone who was aware of me. My parents were okay people, but they could be emotionally aloof to the existence of their progeny to a bizarre degree . . . products, I suppose, of some deficits in the rearing that they were afforded. It was really an odd style of parenting that turned out offspring with so much obvious unmet need. Everyone has unmet need, but I'm talking outside the norm. One of my sibs could be a contender for a gold medal in being screwed up via the lack of having been nurtured. I managed to adapt better and learn to self-nurture, but like the song says, "Everybody needs somebody sometime." Some things are hard to teach yourself, if parental role modeling isn't there.

So along came this guy and someone was present in my world. He had problems, but he could be good company. And he was just as in need of connecting with another person. So we coupled up and it felt like a relief for both of us. So I wanted to make the most of that for what time was going to be left, now that he obviously hasn't got much time to go. Then dementia kicks in and the space between us widens no matter how close together we sit. It's like he's drifting away in a little boat, while I stand on the shore straining to see him through a thickening fog. But, at least, being in this apartment together creates some semblance of home and family.

So that's on its way out. I'll be kind of back to where I was before I met him. At least, what we seemed to have got me through a lot of years. I never expected to live this long.

Maybe, if I go eat something, I won't feel so bad. Plus I have to feed him. Tomorrow's another day. Maybe my bad episode is winding down. They always do eventually. Taking a hydrocodone earlier helped. I'm going to run out before the end of the month, which I usually don't let happen. They help me mentally and past few weeks were trying. I should go buy some wine. I don't think being alone at this stage of my life will be as bad as when I was young. Sometimes you just have to keep yourself company. That's what I'm doing on this thread right now. Some can relate to that. Some can't. Some just ought to move on and spare me their inane commentary. Solitude isn't the worst thing.

(((((Rose))))) So sorry..... Again, know at your deepest level that you are doing the best you can.

Sometimes the best I can do is a way lot better than it was today. This up and down is bad. I don't hold together long enough to get on top of things.

It's OK. So you're up and down. You're not ever on an even keel. Well, I guess that means you're still here with the rest of us humans. You haven't flatlined yet!

From Luvurself: please consider doing a blog that would help even more caregivers.

I just read this post from Luvurself. It sounds like a GREAT idea if you could somehow find the time. There are so many other folks out there going around bearing the world on their shoulders, trying to take care of somebody and themselves at the same time.

When I have time to focus, I'ld like to know how to blog. I like writing as an outlet. I believe I think clearer when I try to shape my thoughts into sentences. And things occur to me that otherwise wouldn't.

I have to get a bunch of housework done. My bf is telling me to get going. He thinks I create my own misery by wasting time vegetating and not just tackling things. There is truth in that . . . a lot of truth.

His cough sounds awful. I almost want to take him to the ER. But they're so sick of us coming there. The pressure to go the hospice route is strong when you have a loved one whose life is winding down. What's wrong is the dishonesty of how this is pushed. Doctors see themselves as stewards of society's resources, and they get to thinking it would be best all around to engage in benign neglect and facilitate passive euthanasia.

Amazing how things can turn around. I'm having a good day and feel quite well. If I could only be less of a slave to my immediate reactions to things. Right now I'm fine.

Took my guy to the oncologist today and got some issues addressed. I feel very recovered from my meltdown of the past few days.

Now if I could just keep this going.

Up at 6:30 a.m. to get bf ready for appointment with oncologist. Busy day. Didn't have the help we had because attendant has quit for health reasons. But I did fine and it was a busy day. I was so glad to have gotten out of my funk and did well today.

Then at 10 p.m. bf gave me a hard time not cooperating with care needs. I'm so disappointed. Now his care is all on me . . . and he's going to give me an argument about things. Us doing good working together never lasts.

Still awake and having restless leg syndrome. Usually I've only gotten that from certain drugs taken in too high quantity or from anemia. I don't know what started this. Maybe it's withdrawal from hydrocodone that I've run out of.

I might try milk and cake.

Having a bad day.

Hate bad days. And you were doing so well for a couple there till your bf decided to be a ————- . Sounds like he needs an attitude adjustment ☹️

Possible you can hire more help?

Dementia sufferers can't really be given attitude adjustments. Oh, I've tried. That's a sign of something wrong with me.

He doesn't even know, now, what upset me.

The help we had was through Medicaid. His income is small. If I had any hope of finding someone who could do what needs doing, I could probably squeeze out from his income enough for a few hours of help. I tried a number of people. They were just one problem after another.

I knew someone who had a great caregiver for her husband. The person couldn't speak English. I don't know if she even had papers, but she was fabulous.

I guess I gotta think outside the box.

He just needed an emergency shower, and there was no hot water. Pilot went out. Of all times for that to happen. I was forced to set depression aside for a while. Now he's all cleaned up and tucked in for the night. I have a sense of accomplishment, but I still feel pretty down.

I let dishes pile up, and now I dread tackling the kitchen. If I'ld just do it, I'ld feel better.

Maybe by tomorrow I'll feel better. Sometime just the passage of time gets rid of the demoralization.

You can do it, Rose. If there is anything that I know from reading your posts is that you persevere despite all odds. Hopefully you will get a quiet moment tonight too.

I'm doing much better. I think tomorrow will be a pretty good day.

The past few days I've felt t like I didn't want to live, but that passed.

Awfully depressed all day Saturday. Friday went okay. Made a nice dinner. Saturday I didn't even cook. We had a spat. I got consumed by resentment. I'm having frequent, severe mood swings. My life is becoming unmanageable, literally.

I'm barely functioning. I'm neglecting the care my bf needs. Just doing very bare essentials. I have no interest. He mostly sleeps for 19 hours a day. Doesn't really wake up till 5 pm. I don't think the way I'm feeling is just a temporary funk that will pass. I guess I'm going to have to find him a bed somewhere in a nursing home - maybe I could call it a temporary placement, giving me time to decide if I really want it to be permanent.

I could use some help with this. I could pressure his family and get one of his kids to fly out. I don't really want to do that even.

He's had some very brief lapses of contact with reality. Maybe they could be called fleeting hallucinations. He calls for me saying that he's fallen on floor - when he hasn't.

I have to take him to the bathroom now.

I could turn the placement over to the VA social worker. He'ld then get put in the first place to have a bed. If I do the placement myself, I can shop around. Not that there's a whole lot to distinguish one place from another. The better nursing homes require "private pay." He has no assets and only a small income. He is already approved for institutional Medicaid. So I have to pick from among the homes that accept Medicaid. (The better places brag that they accept Medicaid. There's a twist to that. Some of their residents outlive their wealth, even when they have considerable assets and income. So, after a few or more years of paying the big bucks drain them of their financial resources, then and only then, the nursing home will allow them to stay on as patients "on institutional Medicaid." I had one wealthy relative who went into a swanky nursing home. What I heard was that, to be accepted as a resident, she had to let the facility have some sort of a "lien" on all her wealth, so that she could not "gift" it to her family, while she was alive and in this facility. It had to be used to pay for her care. It's a "quid pro quo" deal, with an element of "gamble" in it for the n. home. In exchange for you paying the big bucks for as long as your wealth lasts, the home will accept the smaller Medicaid payments, when your assets are exhausted. Some of these homes even had a less swanky section of the facility that you would be moved to when you could no longer pay privately. I worked for 5 years in a place like that. Some of these high-end facilities are operated by religious organizations. (Examples I know of, firsthand, have affiliations that are Catholic and Lutheran. They hold themselves to higher standards AND have the revenue stream that makes that possible.)

Facilities run for profit, that are not marketing to the very affluent, simply are not oriented toward high quality care, just like McDonald's is not oriented toward the best nutritional standards. They can't be. I happen to have worked in 3 facilities that did derive most of their revenue from Medicaid and did have above average standards. All 3 were non-profit. One was operated by a Franciscan order of sisters. Another was publicly owned and operated by a large city. Another was owned by one of this country's most affluent Indian tribes. That's what it takes to get proper incentivization. There has to be a board of directors who are answerable to something other than maximizing the bottom line. For-profit chains do care about not getting sued. That doesn't fix everything. They accept losing some lawsuits as just a cost of doing business. Increasing regulation has not had the desired effect either. Facilities do worry constantly about running afoul of "regs." All procedures are structured to avoid triggering a "reg violation." That actually drains effort away from designing care to best meet patient needs. Nurses aren't encouraged to rely on their own discretion to make decisions about how to allocate the attention of staff when need outstrips the man-hours available to meet need, as will happen whenever we don't have a private caregiver assigned to each patient. (Filling water pitchers will take precedence over getting residents to the bathroom because "state surveyors" can more easily check the temperature of the water pitchers than whether or not incontinent patients are left unchanged all day.)

There are federal standards and state standards. Poor states don't seem to have the same standards as richer states. For instance, in poor states, nurses' aids are allowed to pass medications. That results in nurses not having much interaction with patients. After decades of working in long-term care, I am able to see how conditions are actually deteriorating in some respects.

Anyway, my job isn't to write a treatise on what's wrong with this multi-billion dollar industry. I have to decide what to do about one particular elder whom I care about.

I thought that the Medicaid Waiver program, which provides in-home help with caregiving, as an alternative to institutional placement costing the government upwards from $8000/month, would make this doable for me. It's a crappy program that is nothing like what I envisioned 3 years ago when I helped my bf qualify for it.

I keep putting off giving up on doing the care myself. I tell myself to just try harder to keep this arrangement afloat. The result is I'm just getting worse and worse depressed. I'm starting to not care about him. It was never a great relationship . . . but it was what I had. It had lasted a long time. I always seemed to give an awful lot for what I got in return. Now I feel depleted . . . like my soul is bankrupt. I believe depression comes from having an approach to life that doesn't work very well. That's my story for sure. I'm a mess now.

I'm so down it's awful. Not even sad. Just devoid of motivation. I'm barely coping. I feel like I'm never going to be alright again.

I feel like I should tell someone - his daughter . . . my PCP. I don't think I can will myself out of this.

I've decided to set up the respite option, whereby he goes to a nursing home for two weeks and I get off the treadmill to try and recover. I'm becoming a mess. The apartment is a topsy-turvy mess of stuff strewn everywhere. I don't even keep up with doing the dishes. Kitchen's messy right now. He sleeps 19 hours a day. Maybe he can't help that. But he's got a history of letting me make most of the effort. I'm depleted.