[Rose76]

I've started threads before about being stressed by my role of caregiving to my terminally ill sig. other. Here's another one.

I don't feel sad. Mainly I've gotten apathetic. This has happened numerous times over the past 5 years, and it has passed. It's a form of depression. Like I just don't care anymore. Not about him . . . not about me . . . not about much. I just waste day after day doing as little as I can.

I'm a believer that a change in one's frame of mind is always set off by something. For 3 weeks my bf has had colitis. It's a side effect of the drug used to treat his cancer. This is a new development, after months of no really bad side effects. This morning I just got sick of dealing with it. Last 2 days, I thought he was better. But this morning, before dawn . . . it's not over at all.

I started thinking, "What has this guy ever done for me that I am here tending to him through all this misery?" We hadn't even been living together for some years because the relationship hadn't been too good. I just felt streaming resentment.

I'm not looking for praise. I don't need pats on the back. (Though a little expression of appreciation from him would be nice. He has always taken me for granted.) But I need to stop wallowing in resentment and demoralization - for my own sake.

I don't have to do this. Much of the time, I've felt that being here with him is what I've wanted. Much of the time I've been fairly content.

This morning, I thought, "I am throwing in the towel." Now I don't feel quite that bad. But I'm still in pajamas and have spent the day on the couch, both of us just staring at the TV. I've napped on and off. I'm just doing as little as possible and that feels fine to me.

Being this lazy can't be good though.

I wonder what others do when all interest goes out the window. Anyone who has recurrent issues with depression probably knows what it's like to feel this way.

[Mopey]

(((Rose))) ❤️ It’s so hard. I’m thinking of you. Sounds as if you’re on the horns of a dilemma. Loving thoughts and prayers...

[Rose76]

Those horns is a pretty apt metaphor. Life just seems to hand me these awful choices. Or I hand them to myself. Or I just have an unusually hard time dealing with "options." Shortly after meeting this man, many years ago, it was more than clear that he was a poor candidate for having as a life-partner. But we hit it off so extremely well, when I wasn't on the verge of killing him. Even when we stopped living together, we remained very close. When his health started to really deteriorate, about 8 years ago, I wanted to help him manage things that were getting difficult. I'ld pick up groceries and drop off laundry. He had such serious illnesses that it seemed he wasn't long for this world. That's what doctors thought and have been telling me. A few years ago, they advised me that "he should be a hospice client." (That's supposed to mean you have only 6 months to go.) If I knew - back in 2013 - that he had at least another 6 years to go, I probably would not have gotten so reinvolved. But I did, and it was a case of mission creep, thinking that I was making his last few months easier. Those few months have morphed into years.

Only Heaven above knows how long anyone has on this earth, but he keeps having one near-fatal illness after another. And he keeps recovering. Already he's been hospitalized 3 times this year. Each time, doctors tell me that the end is at hand and that he should get Paliative Care or Hospice. But they told me that over 2 years ago. Nobody wants to lose a friend as close as he's been to me . . . but, as a nurse, I have seen even parents get strung out keeping a "vigil" by the bed of a son or daughter, when the vigil becomes prolonged. Years of anticipatory grieving, combined with a relentless need for receiving near-total care, gets to be a drain. (He hasn't yet needed his meals spoonfed, but I do have to cut up his meat, like for a child. He no longer can walk.) This is not about "Look how much I do." I have gotten a ton of acknowledgement for that. This is about "Look how hard it is to step back, once you've stepped in." So I appreciate the "horns" metaphor. I know my options to pare down my commitment. I know all about nursing homes and how to get him into one. I was sort of picturing doing that after he, maybe, fell into a sort of a coma and wouldn't know the difference. Nothing like that is happening to make it easier for me. And I ask myself: "Why not?" Is there a Cosmic Force that just has to test us to the nth degree. I feel like a guinea pig in some sort of cosmic experiment: "Let's give her these very disagreeable options and see how long she squirms, before she caves in or goes nuts." My goal, presently, is to continue doing what I doing . . . without going nuts. But lately I've been acting "nuts." Way too irritable, impatient, burned out.

I wouldn't blame anyone for thinking: "What can we tell Rose that she hasn't already been told, repeatedly?" I guess I'm just venting.

The home attendant is here, so I better nap while I can. Last night I just didn't sleep. After getting used to taking Ritalin in the morning, I've run out a week ago. I can't seem to reach my pdoc to get a fresh script.

[Mopey]

Rose, anything I could say would be meaningless in the face of your situation.

It is possible, though, that by itself it is moving more or less interminably, to a crisis. Something may eventually happen that will make this decision for you, even if you have not by then made it for yourself. Meanwhile, it is totally understandable that you feel burnt-out, numb, half-dead yourself. It's like a mountain climber said about making the last few steps to the top of Everest: By then he no longer cared about what he was doing, he just had some unshakeable impulse within him to keep plodding to the top.

It does seem, though, as if someone ought to be able to substitute for your Pdoc in getting you some more Ritalin right away. You are under tremendous stress, after all.

[Fuzzybear]

[Rose76]

I did get my Ritalin refilled. It helps a bit. Thanks Mopey and Fuzzy. Sooner or later, something's gotta give. I hope it isn't my sanity. I tell myself it would be better to scale back my involvement gracefully, then just become a wreck who can't cope, and then others have to take the situation in hand.

My options seem to be all or nothing. Seeing this man through to the end is like trying to get to the mountain top and plant my flag, saying "I completed what I undertook." I'm just slogging forward now, one foot in front of the other.

[Mopey]

Hi Rose - glad you got your Ritalin refilled.

Do you see any way you could scale back your involvement, as you say?

Anything? No matter how little?

[Rose76]

Not really.

If I would just get up and clean the apartment, I would feel so much better. But I can't even make myself brush my teeth.

I make sure he is clean and fed. I make sure he gets all his meds and keeps all his doctor appointments. I make sure he is kept reasonably entertained. I find shows on TV to interest him. And I even make myself reasonably companionable to him.

But, when I'm not tending to a need of his, I sit and read online. I don't brush my teeth. I don't bother taking some of my meds. I just take pain pills and what I need to sleep at night. I don't open my mail. I don't bother paying my bills on time, even though I have enough in my checkbook to do so. I don't bother combing my hair. I get the dishes done, but the place is messy.

I am depressed. I don't even think having my bf go to a nursing home temporarily would help me.

In the morning is bad. I only get up from bed to give him breakfast. Then this evening was bad. I was weeping, silently, while doing dishes.

I drank some wine earlier than usual, and it made me feel lousy when it wire off. I have no real hope. I think I'm just going to go downhill.

I'm hungry. Sometimes I just eat brown sugar by the spoonful. I'm hungry now. I'll eat something. Hydrocodone is not helping like it usually does. I didn't take the Ritalin today. I forgot where I put it.

[Mopey]

Rose, darling, it sounds to me as if you’re in real trouble. The only suggestion I can think of to lighten your load is that your computer can probably be set up to handle your bills automatically, but that is essentially meaningless in the face of your situation. You’re just simply using up everything you’ve got in taking care of your friend.

I’m going to seek advice.

[Rose76]

I feel like, if I wasn't taking care of him, I'ld be doing nothing. I'ld probably just go to bed and stay there. I know you can't get more out of life than you put in. I know I'm not putting much in. I'm not interested. If I force myself, it doesn't last. Getting started in the morning is the hardest. I haven't gotten started yet today. It's almost noon.

Thank you for checking my thread.

[Mopey]

Yes you are putting something in. You're putting your whole self in and have nothing left. Maybe if you stopped caring for him for awhile it might feel like you have "nothing" in your life, but look at it this way: At least you'd have some time to recover. Then when you had finally got some of your energy back you might feel like doing "something" for yourself again.

[Rose76]

In the past, when I've been going down and down for too long, I've asked myself: "What can I change about my life?" I think I have to change something, even without knowing what the result will be. I've gone on long enough telling myself I have to change me . . . that's getting me nowhere. I have to get myself into different circumstances.

I don't know that putting my bf into a nursing home will help me. Maybe it will even backfire and make me worse off. But I can't keep doing what I'm doing.

I wish I could see around the corner to know beforehand what I'll find, if I turn off the path I'm on and go down a different path. There is no way to see around the corner. I may have to choose a different option with no way of knowing that it won't just make my life worse. That's the awful part. It seems so unfair to be in this position. I have to stop crying about fair verses unfair. Life just is.

Doing what I'm doing is not working out. It might be what is best for my bf, but it's not working out for me. Maybe doing something different won't even be better for me. I just don't know. I probably can't know. Maybe it has to be just a big experiment that might totally fail. But maybe I have to try it. I've done this kind of experiment before when I was desperate. I've gotten surprised that it sometimes landed me in better circumstances - where I got unstuck and was able to move foward in a way that dudn't feel like going down a dead end street. This is very painful to face risking everything getting even worse.

I wonder if the VA might help me, or if anyone would help me. It feels like it's all on me to make sure he is alright. It isn't a concern of anyone's that I'm alright.

[Mopey]

It's a concern to me - someone you don't even know - but more importantly it should be a concern to you. No one knows you, or your needs at any given time, better than you do, and no one can act in your place, FOR you.

And yes, life is &%$# unfair, and no, you can't know what's around the corner. But yes, I think you're right, sometimes you just have to do SOMETHING, to shake things loose, to get your life moving again. Even if it turns out crappy. Then you can do something else. And so forth.

I think your idea about trying the VA is a good one if your friend is a veteran. It's a place to start, anyway.

XOXOXO

[Rose76]

After silently sobbing through the making of my last post, I took some pills. I'm supposed to take Ritalin 20 mg once daily in the morning. After not bothering with it for a few days, I found the misplaced vial of Ritalin and took 1 and a half tablets (30 mg.) I was just desperate to experience a "mood alteration." I also threw down a tablet of hydrocodone 7.5 mg. for its mood-enhancing effect. I also started thinking that my idea about putting my bf in a facility for at least a temporary stay is something I'm finally going to give serious consideration. Then I made myself some French toast because I was hungry.

I improved dramatically in a short while. The pills seem to have hit me just right. Their effect can depend on what my mind is doing. 3 hours ago, my thought processes, the Ritalin and the plate of food interacted just right, so that I got a big lift out of the trough I was in. Suddenly, I felt the apathy giving way to me having some interest in straightening up the apartment (though I haven't started yet.) Also, I felt nicer toward my boyfriend. Ritalin makes me "chatty," and I've been talkative with him, in a friendly way. I'm not blaming him as much now, either.

Thanks, Mopey, for listening and sharing some thoughts with me. Sometimes, I think clearer and more productively while writing my thoughts than by just having them roll around in my head. By trying to explain a situation, or a dilemma, to someone else, I sometimes get a better, clearer understanding in my own mind. It helped that you seemed to appreciate that I have been in a dilemma without an obvious, easy solution.

My mind had been closed to doing anything different from how I've been doing, and I was just getting more and more deeply depressed . . . feeling like I'm in an unhappy situation that there is no getting out of, without just ending up more miserable. I feel differently now.

I'm slow to ever claim I've made a breakthrough, but I think I did 3 hours ago. I certainly feel a lessening of distress.

Now I mustn't just enjoy the current mental glow, only to relapse into despair a few hours from now. The glow is already waning (I think Ritalin wears off rather soon.) And I can't pop pills every few hours. As you say, sometimes any change is better than staying frozen in the status quo. If I try one change and don't like the result, I'm not married to it. I see this as a need to experiment. A failed experiment can help you imagine another experiment. An attempted solution that doesn't work can often yield insight that leads to other new ideas. The main thing is to get unfrozen. When we think we've considered all the options, often we haven't. Somethings can't be figured out mentally, in the abstract. Trying to do that is a tendency I have. When I got my first 2-wheel bicycle, I spent days and days sitting outside looking at it. My plan was to try and ride it just as soon as I mentally figured out how one keeps a bicycle from tipping over under the weight of a rider. I never could figure that out. Eventually, my arms and legs figured it out. I still can't mentally explain it.

It might help to talk to talk to my bf's VA support team about me using the "respite" benefit. The VA will pay for him to have a stay. Maybe I might mention it to his children. I know all these parties would encourage me to do whatever might feel right to me. I don't fear any criticism. There would be none. I can't be assured nothing unfortunate might result. But then, anytime I get in my car, I can't be assured some drunk won't T-bone me. That happened one night as I was driving to work. Oddly enough, the outcome improved my life. I wasn't hurt, and I got a much better car to replace the one that was totaled.

[Mopey]

((((()))))

[Rose76]

Thanks for your concern. My "glow" wore off. This may be a roller coaster ride for awhile. I will make supper now. I'm not hopeless.

[Mopey]

The glow may have at least partially been due to the meds. They can help. But their effect by nature is temporary. Please keep going forward, one step at a time. And please keep in touch.

By the way, if I had half your ability to organize my stuff, I'd be happy. Sadly, I'm a natural slob. But I keep trying!

Thanks for the input.

[Rose76]

Yes, I think a med high kicked in, but being physically inactive and accomplishing nothing meant I couldn't build on or sustain it.

I know there are no short cuts to progress. It takes sustained effort.

I am in trouble with how I've been doing things. I should set up my pill box for the week starting tomorrow and try taking all my meds consistently over the next week.

Yesterday showed me that drinking wine in the afternoon doesn't have a good outcome.

[Rose76]

This morning I took the hydrocodone and Ritalin. Just like yesterday, in a little while I felt pretty good. I cooked my bf a good breakfast.

Now the "lift" is wearing off. I want to go back to sleep, instead of getting stuff done. Maybe, I could use a timer and alternate being productive for just 30 minute intervals with intervals of not having to try. I just can't talk myself into spending a few hours, solid, doing what I need to get done.

[Mopey]

The idea of the timer sounds good. At least you’d be giving yourself mini- breaks which has got to br better than nothing.

And your idea for the meds, absolutely. It can be so hard to keep track of them even for someone not as stressed as you are, and it does sound as if they’re helping you to keep going.

When my husband was recovering from open heart surgery a couple of years ago at first I was expecting him to keep track of his own meds, but it soon became obvious that he couldnt do it. He was just simply too weak and woozy. So we ended up making a grid for the day with morning and evening and tick boxes for all the many different meds, and it really helped us keep up with the meds.

Come to think of it, I imagine your friend/patient must have a bunch of meds he’s taking, too....

[Rose76]

Yeah, he's got oodles of them. When he was independent and self-managing, I too thought he was on top of his meds. He had med boxes and pill cutters and crushers and seemed to have a nice little system. Boy was I deluded. I found him having spells of very low blood pressure. I watched him self-administer meds one day and discovered he was taking 4 times the prescribed dosage of BP medication. Then I further audited what he was doing. It was total chaos. Med bottles containing multiple different pills, various shapes and colors, mingled in together. Taking several dosages of the same med. Still using meds that had been discontinued, along with what replaced them. Using bottles past expiration date. Omitting some meds. He had become absolutely clueless about what to take when. But he was a busy beaver, moving pills from one bottle to another and filling up the compartments of his "pill-minder" boxes and consolidating half-empty containers of pills, pouring what was left in one container into another half-empty container, nevermind that they weren't the same med. I think he arranged the pill-minder boxes based on what colors looked good together. But, if you saw him deftly shuffling tablets around, he seemed to know what he was about . . . until one actually paid attention. By the time you realize that someone has dementia, they've had it for more than a little while.

So I now have all his meds sorted into those week's worth boxes with 28 compartments. He gets what I give him 4 times a day. It's a bunch. Even when I'm depressed, I feel I must not screw up his med regimen. But I've become indifferent to my own meds, except the ones that noticeably impact my mood right away. I can't seem to care.

Well, I texted his family today that I am likely going to take advantage of the respite program for family caregivers. I can call a few facilities tomorrow and maybe visit one or two. I'll notify his VA social worker tomorrow that I'm looking around. All these people have been telling me for a couple of years that I should take some time off. If I don't arrange this myself, I may wind up becoming unglued and, then, someone else will arrange it. I don't think becoming an unhinged, babbling idiot who just can't cope anymore is really what I want to reduce myself to.

I'm sleepy now. Tomorrow is another day.

[Mopey]

Attagirl, Rose.

[Rose76]

I know now that I've got to find my bf a bed in a nursing home, whether that be temporary or permanent. I can't sustain what I've been doing. I've unraveled.

The problem is that moving ahead with this plan takes energy and work. I'm depleted. The attendant is here now. Since she arrived, I've been in bed. First that was to get some needed rest. Now I'm just under the covers hiding. I know that's childish.

I need something to eat. Just like the other day. When very stressed, I don't eat. Being hungry has always made me much less able to cope.

So I'll eat. I think I'll also take those two meds that make me feel better. That will be temporary, but I need some help, even just chemical. Anything to not feel so overwhelmed and defeated.

If I traveled in circles where I ran into drug dealers, I'ld be looking to purchase substances-of-abuse. I see why people go in that direction. Life can get to seem impossible. Any way to feel better soon can seem like what a person wants. Alcohol is no good because it makes me tired. I have to find the Ritalin and take one. Plus I'm sore. I have to take a pain pill. And I have to eat.

[Mopey]

Yes, please do eat. And something nutritious. And please do take your pills. And please please go forward with your plans to get your bf care elsewhere. I’m really relived to hear that you’re going to get yourself some well deserved rest.

Do I hear a “Yes, Mother?”

[unaluna]

Omg Rose, that would be comical what he was doing with his pills, if it werent so dangerous!

Maybe this respite care can be set up as a recurring thing in the future? Im glad too to hear youre doing it.

I have a can of tunafish and a slice of mestermacher rye bread every morning. Its kind of a weird breakfast but i figure its nourishing.