[Rose76]

I've put up threads on my role as caretaker before. The issue right now is me being uncaring and possibly depressed. I'm in bed around the clock, sleeping and sleeping like I had the flu. I barely go out to see what my s.o. needs. He just sits in front of the TV hour after hour. I haven't properly fed him today. Yesterday I got angry and shouted at him about his refusal to keep his feet, which are swollen, up on on a ottoman. This is the worst I've been, since I've been caring for him over the past 3 plus years. I feel like I don't care anymore. I have to pull it together, or give up. Giving up isn't the easy solution some think it is, either. If I wasn't doing this, I could be just as depressed, if not worst.

I've never had children. This is kind of like being cooped up with a 2&1/2 year old who needs me for every, single, blessed thing. I fel like I know what postpartum depression feels like.

Of course, you can't as easily ignore a small child. They fuss and cry. My boyfriend just contentedly sits watching a baseball game on TV, forgetting he didn't get lunch.

[Rose76]

I'm better now. Got him showered and fed supper. Watching the special on TV to raise money for Puerto Rico. Things seem much better.

I have to keep remembering that, often, it's just getting started that's so hard.

You're so right. Setting things in motion, and initiating what needs to be done is at least half the battle, if not more. It's so, so hard to remember that when it seems like there's no point in getting out of bed whatsoever.

[divine1966]

Care giving on the clock is brutal. Anyone would feel burn out. I think staying busy is important yet you do need rest. Yeah easy to say. Hang in there

[Sunflower123]

I’m glad you are feeling better. You sound like you’re getting caregiver burn out. Please take good care of yourself and investigate whether you can get somebody to give you a break every now and then. Sending big hugs.

[Rose76]

We do have an attendant who comes in 3 days a week. It sounds like a lot of help, but here's what it means. On the days that she is here for 7 hours, I only have to work the other 17 hours of the 24 hr day. That may sound like a whine, but it's just the reality. He's up a lot in the dead of night and needing care. That itself wouldn't be hard, but he argues a lot. He decides he wants to sit up in the living room all night long. I try to repeatedly coax him back to bed, but he'll keep getting up. Last night I left him and I woke up to a bang. He slumped sideways on his chair and somehow knocked over a side table. I blew up. I said I was tired of all this craziness every night. I'm getting to where I could be described as verbally abusive. Still, it seems he'ld vastly prefer being home with his crazy, bipolar girlfriend, than be in a facility, which he's already tried a few times, so he knows exactly what the alternative is. And so do I. He's cleaner and doesn't have skin breakdown. And he's happier. And he's not winding up on the floor 3 times a month. And he eats better.

For the most part, I think I've done a pretty good job. It could be better, if he were more cooperative. He hates getting showered, or doing his exercises, or anything else, other than watching TV and eating. And he would like to just eat deserts.

Neither of us has any family for thousands of miles around, so not much of a support network. We had actually separated years ago, and I resolved back then that I would never take on this role. It started with just picking up groceries for him. Then it just gradually evolved to complete, total care - a case a "mission creep." I don't actually live with him, but now I actually do. My own apartment is down the road unoccupied.

I go into these details here because there is no one for me to talk to about what I do. His adult kids don't even talk to me on the phone. It's not like they're going to be there for me when I get old. After he passes on, I'll probably never hear from them again. Because I'm afraid to leave him alone, I don't travel to see my family anymore. So my connections to them are becoming fainter. I'm in this shrinking world. I wonder did I plan my life so terribly that this is what it was destined to become.

I would like to find a caregiver support group- either IRL, or online. Only those who've done this really know what it's like. Some people sure make it look easy.

I wonder how much longer has he got? And I feel so close to him that I dread losing him. (He can be lovable, and we shared so many years together.) But I think of all the normal interests I could pursue that have to just wait until I'm free of this role. I could be doing more for myself. I've just gotten into this rut of being glued to him. But we've had a stream of paid caregivers pass through here, and they end up needing almost as much tending to as he does. They never seem to get to where I can leave them on auto pilot.

I guess it helped a little to collect my thoughts here. I could improve my life vastly, if I could rally from the inertia of depression long enough to undertake starting something for myself.

[MickeyCheeky]

I admire you for being so strong and kind even in these difficutl times. Not many people would be able to do that you're doing. I hope things will improve for you and him, sooner or later..

Hang in there.

[divine1966]

Are you paying rent on your apartment yet don't stay there? Could you give up that apartment and stay with him? Could you be put on the lease at his? It would free ton of rent money that you can save for travelling or pursuing hobbies in the future. I'd hate wasting money like that.

[Rose76]

I really like my apartment. I want it to be there for me, after he is gone. To put all my furniture and stuff in storage would be a lot of trouble. And then he might have a fatal illness a month after I do all that.

Plus, I like it being plain that I don't depend on him for a place to live. I don't have to be here. He might be less nice, if he thought I had nowhere else to go. And I woukd feel totally responsibke for him, if I technically lived with him.

[Shazerac]

The fact that he prefers to stay with "a crazy biploar girlfriend" than in a home concerns me greatly. Maybe you could try staying at your place at night and leaving him on his own. It sounds mean, but it's not. Caretaking is a brutal job at best. The fact that he's verbally abusing you while you are taking care of him is not good at all.

I know that you love him, but you are not obligated to work yourself to death taking care of him, especially when he has other options but instead chooses you to bend over backwards for him.

I would like to find a caregiver support group- either IRL, or online. Only those who've done this really know what it's like.

I think this would be very helpful for you Rose, do you have any idea where to find these things in your area?

I am in the UK so not au fait with the networks within the area of the US you are in. From my experience here I would say carer support networks are incredibly valuable in themselves (and would likely dispell the myth that some people make it look easy once you get to know more people in similar situations) and also can lead to other avenues of support and information via others.

I did google around and found this as a starter:

https://www.caregiver.org/caregiver-connect

Dementia & Alzheimer's Caregiver Center

[Rose76]

Originally Posted by Shazerac

The fact that he prefers to stay with "a crazy biploar girlfriend" than in a home concerns me greatly. Maybe you could try staying at your place at night and leaving him on his own. It sounds mean, but it's not. Caretaking is a brutal job at best. The fact that he's verbally abusing you while you are taking care of him is not good at all.

I know that you love him, but you are not obligated to work yourself to death taking care of him, especially when he has other options but instead chooses you to bend over backwards for him.

He could not be left alone at night. If I didn't want to stay with him, I woukd have to notify his family or the VA, so he could be placed in a nursing home. He cannot be safely left alone. He has mobility impairment and dementia.

What I wrote above was that I get impatient and have shouted at him. I am not being abused by him in any way.

[BeyondtheRainbow]

Originally Posted by Rose76

other than watching TV and eating. And he would like to just eat deserts. .

Taking one tiny point, despite having a lot of empathy and respect for you for the entire situation...

People with dementia lose their sense of taste until all they can really taste is sweet stuff. Sprinkling regular foods with a little artificial sweetener can increase intake of healthy foods. It sounds gross but it is less gross that eating a lot of stuff that tastes like paste at every meal, no matter how good the food really is.

[Erebos]

Any chance you have compassion fatigue Rose hun, it's a recognised condition, especially amongst aid workers.
You have been at it so long without getting anything back, it wouldn't surprise me.
Where's your support, who do you lean on?
It sounds like you need to offload, perhaps accept some assistance for a little while?

[Erebos]

I agree with previous posts also, what little experience I do have with dementia (helping care for my grandmother,) I found tremendously hard.
I had so much baggage connected to her awful treatment of my mother, that I found it almost impossible to remove my bias from the situations where she was being rude and utterly vile, and remain impartial.

As much as she wanted to be home, she was bed ridden, the simple fact was that we all needed a break from time to time to ensure we did the best for her in the end.
My mum often ended her day in tears and I would be full of anger and venom.
I will admit it was a relief when she finally passed, and you have my up most admiration as I know that it is not a job I could do.
You can't take care of someone until out take care of yourself, that much I do know.
Take care.

[Rose76]

Thanks for all comments above.

I just googled "compassion fatigue," which I hadn't heard of before. Some of what I read reflected my own experience.

This is like over 3 years without a real break, except a few hours here and there. And lately he had two acute medical crises within a two month period. Worrisome things keep popping up, like in a game of whack-a-mole. Like last night he seemed to be having a TIA, as he was having trouble speaking. He took hold of my hand, like he was trying to convey with his hand what he couldn't say. By this morning, that was resolved. Then this evening he has had a disturbing cough with odd copious mucus production that he couldn't seem to clear, like he might have a mucus plug blocking part of his lung. It gets to where I don't even feel my own knowledge base is adequate to sufficiently assess what is going on. And we're both burned out on going in to the emergency room.

Tired now and going to bed.

[Erebos]

The other crushing thing about caring for someone with dementia, is how it utterly destroys your memories of them.
If you, like me, are prone to rumination, I would think carefully about just how much care it's good to take on.
Listening to their crass and hurtful comments once is bad enough, but replaying them over and over looking for a meaning or reason, when the truth us there is NONE, is enough to make the best of us utterly miserable.

Take care of yourself hun, just take it one day at a time.

[seesaw]

Originally Posted by Rose76

He could not be left alone at night. If I didn't want to stay with him, I woukd have to notify his family or the VA, so he could be placed in a nursing home. He cannot be safely left alone. He has mobility impairment and dementia.

What I wrote above was that I get impatient and have shouted at him. I am not being abused by him in any way.

Brutal honesty, he should be thanking his stars that you are there for him, bipolar or not, so that he can stay in his home and not have to go to a nursing facility.

But realistically, maybe a nursing facility is the best place for him so you aren't devoting your whole life to bathing him, feeding him, and spending every waking second caring for him? I know we want to devote ourselves to our loved ones, but it's not always the healthiest thing for us, especially when you're struggling with bipolar yourself.

He is very blessed to have you, at any rate.

Seesaw