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Default Apr 22, 2020 at 07:51 AM
  #341
I improved a lot yesterday . . . after my PCP allowed me to refill my Vicodin ahead of schedule. Plus my pdoc ordered me a refill on Ritalin - which I'ld been out of. Taking them made quite a difference.

Thanks, Raindrop. Yes, I have hung in here for quite a good while. He would have gone to a facility by 2014, if not sooner (2012), were it not for me. That's a big hunk of my life. His daughter who's way far from us, told me yesterday to seriously consider the n. home option.

Today I feel so good. But I have to see if I can sustain that. My right arm is bad this a.m. He's been demanding since 2:30 a.m. to be gotten out of bed. I did just get him up @ 6:30 a.m. Now I go back to bed.
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Default May 02, 2020 at 02:30 AM
  #342
My bf is in the hospital with pneumonia since last evening. His oxygen level went too low and he was going into delirium. Because of COVID, I can't go visit him. They tested him and he was negative for that. At the VA he gets good care. They even have a sitter with him because of his confusion.

I feel strange here alone. I'm glad of a rest though.
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Default May 02, 2020 at 10:57 PM
  #343
Since you can't visit can you use this time to take some me time? Just focus on relaxing and unwinding if you can. Maybe this break will let you recharge your batteries Please let us know how you are doing without him being there.

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Default May 03, 2020 at 12:47 AM
  #344
Thanks, Rain. After he was taken away late Thurs eve, I started catching up on rest. Today (Sat) was the beginning of me not feeling awful tired. I went to Home Depot to pick up a new shower chair I had ordered. At "curbside pick-up" a young guy put it in the back seat of my car for me. I pulled away and started crying, wondering if I'll ever get to use it.

I an awfully glad he's at the VA getting what I believe is very good care. They have a sitter constantly with him because he's confused. I did talk to him on tbe phone today. He sounded pretty good. Still kind of confused.

It feels empty in the apartment now alone. But it is soooo good to get off the hampster wheel for a break. My right arm is still very sore. But I want to get the kitchen cleaned.

Me time is a good idea. After the kitchen, I want to shower and then get cozy. I'll have some soup. I'll put a warm heating pad on my arm and look for a movie. I'll tell mysekf to just relax.

It means a lot that someone posted this advice above. I had been sitting here crying. But now I'll try to be nice to myself. One of my sisters has been phoning and being a very good friend. I live far from family.

I hope the hospital doesn't call me to come get him tomorrow. I'm not ready. I can't handle it tomorrow. The newest thing is that he can't stand. We have a "lift," but we've not used it yet.

Well . . . kitchen . . . then, take care of me and my arm.

Thank you, friends, for checking in. I've been close to a breakdown. COVID has messed up my options very badly. Like the rest if the world, I just have to do the best I can. Good night all.
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Default May 03, 2020 at 05:45 PM
  #345
My bf is still in the hospital. No doctor has talked to me recently. I expect they will tomorrow.

My arm is too sore to allow me to clean the apartment. Sink is full of dishes. I feel useless. Like I've given up trying to take care of any thing.
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Default May 04, 2020 at 12:09 AM
  #346
Wow. I started this thread in March of last year - over 13 months ago. Well, I did make it thru another year. So did my guy, with me caring for him.

Ritalin is still proving helpful. I went off it for months. I guess for part of the past year I didn't feel too bad. But now I need it. I'm finding that 40 mg works better than 20 mg. I want to ask pdoc to up my supply. But I'm scared I'll get labeled as drug seeking. About 8 yrs ago a pdoc offered me 60 mg a day. But the older I get, the more I figure they won't want me on these drugs. But stimulants are even used for elderly, dying patients. I need help to function. I need drug help. Once I get up and functioning, I'll improve. Maybe I will call for a phone appt tomorrow.

Hydrocodone and Ritalin combined helps me a lot. My arm hurts less and I get up doing the housework. Then I feel way better. Today I did nothing.

And I need more hydrocodone for my arm. Afraid to ask for too much.
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Default May 04, 2020 at 12:21 AM
  #347
Sometimes you just have to let the dishes soak and try again later. I'm sorry your arm is so sore. Is it a strain or could you have done something more significant to it? You may have to have it looked a to make sure it's not something serious like the rotator cuff.

I know it's not a permanent solution and not environmentally conscious but sometimes ya gotta do what's best for you so have you thought about paper plates, cups and disposable silverware? Cut down on dishes as much as possible so you have less to do and more time for your arm to heal. Maybe look at meals that are just a one pot meal like soups and things so you have less cleanup from cooking.

Also remember little steps can equal a long journey. Even if you just manage to tidy a little as you walk around it all adds up sooner or later. My mom has trashed my car(I'm sharing with her) so every time I'm going to walk past a trashcan I grab SOMETHING out of the car even if it's just one little old napkin. Slowly the crap pile in the car is going down but I've accepted that it's a fight I'm not going to win overnight because she will continually add to it day after day. But as long as I'm making my "tiny steps" every time I walk past a trashcan I'm putting a dent in it

Remember above all else be gentle with yourself. YOU deserve just as good care as you give everyone else.

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Default May 04, 2020 at 01:14 AM
  #348
Thanks Rain. We think a lot alike. I have every size and shape of paper and plastic disposable u can imagine. I kind of did that for the home attendants. Then for me. I buy in bulk at Sam's. Disposable plates, drinking cups. I buy plastic forks in a box containing 600. But you have to dirty a pot once in a while. Truth is that I get real lazy when I'm depressed. I will start buying more TV dinners.

I do have to get rid of the all or nothing mentality. Like you say - incremental progress.

The arm is from just too much repetitive stress. I'm no muscular, but I've been doing a lot of lifting, with moving my guy around. Kitchen work stresses my upper arm. This has gone on for months. I never rested it properly because I couldn't stop doing the stuff that was aggravating it. I went to my PCP.

Pain tells you to stop using a body part. I take pain pills to blunt the pain, so I can keep doing the very thing I should stop doing. I'm prone to inflammation where muscle attaches to bones, tendonitis. Indocin is wonderful for me, but it has side effects.

Now I'm home alone. I can finally rest my sore parts. That's what I did today. Maybe that wasn't such a bad way to spend the day.
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Default May 04, 2020 at 01:46 AM
  #349
I think tomorrow I'll buy a radio for the kitchen. Then it won't seem so bad being in there.

I'm depressed. Depression isn't a character flaw, but character affects how well one manages depression. Right now my character weaknesses are running the show. I just don't care.

My love is in the hospital. I can't even be there with him. He's doing better. Tomorrow they will probably want me to take him home. I can't. It has be one too much for me. I can't keep up what I've been doing. It's even gotten to where the care I give him is becoming negligent. So I'll tell some doctor on the phone that I can't come get him. Then a social worker will call. She'll offer to find him a bed in a nursing home. I'll tell her to go ahead.

So I'll send my love to a crappy dump with Corona running wild through the nursing homes. How can I do this. I'll do it because I'm tired and burned out. I'ld rather be dead than do this to him. But I can't find the wherewithal to bring him home. Why did he have to outlive my strength?

If I find some help, I risk bringing the virus into the apt. I'm very afraid of getting COVID. So is he. And he hasn't been too nice to me lately.

It's this epidemic. It took away the bit of help I had. It makes the nursing homes like leper islands. He's dying. The little time we had left has to be ruined. How rotten does life have to get? This is all so mean and cruel.
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Default May 06, 2020 at 12:01 AM
  #350
How are you holding up today? Did they try to send him home?

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Default May 06, 2020 at 10:56 AM
  #351
Rose76, your commitment to your partner expressed in multidimensional efforts, which have carried you to extremities, is inspirational and praiseworthy. Strength and insight to you.

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Default May 07, 2020 at 12:45 AM
  #352
Sending major hugs your way.
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Default May 08, 2020 at 06:29 AM
  #353
Quote:
Originally Posted by Raindropvampire View Post
How are you holding up today? Did they try to send him home?
I just now saw this post. They sent him home Tues eve by ambulance. He was much improved. The delirium was gone. Now he just has the baseline dementia. (A lot of his mind is intact.)

It turned out he was having an adverse reaction to the antibiotic that the hospice doctor had ordered. It caused neurotoxicity, which manifested as delirium.

The VAMC doctors figured it out because the same thing had happened there once when they gave him that particular drug - moxifloxacin.

The hospice MD wanted me to start giving him morphine. This is why I say hospice is not to be overly trusted.
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Default May 08, 2020 at 09:13 AM
  #354
Quote:
Originally Posted by Rohag View Post
Rose76, your commitment to your partner expressed in multidimensional efforts, which have carried you to extremities, is inspirational and praiseworthy. Strength and insight to you.

I wrote a long response to this and it evaporated. How I hate this new phone.

I'll write again. My arm hurts.

Basically, thank you Rohag.
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Default May 08, 2020 at 09:35 AM
  #355
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Sending major hugs your way.
Nice to get virtual hugs, since we have to avoid the real, physical ones.

My guy was always a good hugger. He was warm. He was a snuggler. He was affectionate. He still is . . . part of the time.

But he depends on me for e v e r y t h i n g. He can't get out of bed without my help. And he gets impatient always having to wait for me. He'll awaken at 4 a.m. and want out of bed. I say "No - not until the sun comes up." Then he'll keep asking. I'll keep saying no. Then he'll call me a beyitch. Then he'll start hollaring my name to come get him up. He'll make it so I can't go back to sleep. Then I'll be so mad. Then we both are mad . . . and close to hating each other.

Now I'm crying. I don't know which is stronger - my weariness and wanting this to be over or my grief and dread at losing him. He was - and still is - a good hugger. I never want to feel a last and final embrace. I still need him.

I need somebody. Thanks for the hug.
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Default May 12, 2020 at 02:54 AM
  #356
Last night, for the 4rth time, just since 2020 began, my s.o. was admitted into the hospital. I liken this to Russian roulette. Each time, he might die. Then he doesn't. I wait for the chamber with the live bullet and wonder how many empty chambers are left. The threat of loss. The threat. Over and over and over.

When I was 11, I got a new baby sister. But she kept having to go back to the hospital . . . over and over and over . . . because of life-threatening seizures. Then, just before her 1rst birthday, my parents came home from visiting her and said she was gone. I would dream she was in her jumping chair in the kitchen and wake up happy for one moment. Then I would remember that she wouldn't be.

I'm sick of feeling threatened. And now we're all living inside this state of threat from that bat-germ. I'm sick of threat.

I'm sick of bracing for loss. I'm sick almost to the core of my soul. I see no end to it now.

Today I had zero interest in taking care of anything that needs attending to. Like piles of unopened mail . . . sink full of dirty dishes. Just left.

I don't like being here alone. I don't have him here to care for. But I'm not really free to go start doing something else.

I'm making things worse by wasting hour after hour, mulling over how sick of everything I am.

People in worse situations make the best of things. I better stop this wallowing.
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Default May 12, 2020 at 10:52 AM
  #357
Just personal musings...
Quote:
Originally Posted by Rose76 View Post
People in worse situations make the best of things.
Some people in worse situations make the best of things. How big is that some in reality?

How do I know I am or am not making the best of a situation? Can I know?


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Default May 20, 2020 at 02:00 AM
  #358
Just checking in Rose to see how you are doing.

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Default May 20, 2020 at 03:16 AM
  #359
Since my last post, I got those dishes done, and my s.o. came home. I did pull things together and felt better about my situation and how I handled it.

Now he is back admitted to the hospital. I can't go into the hospital. I talk with hospital staff on the phone. I'm back to not keeping things up in this apartment. After talking with a doctor yesterday afternoon, I felt agitated and couldn't seem to slow my mind down. All day my feet and hands are cold. I feel so bad for him going through so much toward the end of his life. I feel I have to strenuously advocate for him that the hospitals and doctors really try their best to relieve his distress, and I have to keep a certain pressure on them. In healthcare, squeaky wheels get the grease.

Thank you, Rohag. I agree that it's hard to fairly judge even myself. But I do get very disorganized and that does come at least partly from a lack of self-discipline. I also recognize that this has been a long, tough struggle. I am weakening and tiring.

Thank you Rain. I feel overwrought and weary. I just hope what strength I have lasts as long as he does.

The manager of my bf's apartment complex wants his patio cleaned up. Things he has had on his patio for years are suddenly cited as things that should be removed. I recently spent hours tidying his small garden and patio. This manager recognized the improvement, but said more needs to be done. This complex continually changes the rules on what is allowable. I fear him getting an eviction notice.
Another threat to worry about. This is over the pickiest stuff. The patio actually looks quite nice.

After his last trip to the hospital, the hospice agency wouldn't take him back as a client. Hospice clients aren't supposed to go to the hospital. They say you have that right, but they punish you for using it.

One hospital doctor tried to push me into putting my s.o. into a nursing home. Nursing homes have been in the news lately - not for anything good going on in them.

I fear the future - whether a day from now, or years from now. So much threat barking at my heels.

Last edited by Rose76; May 20, 2020 at 03:35 AM..
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Default May 20, 2020 at 04:45 AM
  #360
It's rare for any mental stress I feel to make me feel physically ill. In the past half-hour, I have gotten to feeling physically unwell, and I think it's largely from psychologic unwellness spilling over into the physical realm.

It's awful. I feel nauseated and just bad from head to toe. I feel sick. This is accumulated stress, and I feel physically miserable. And I can't sleep.

I need some of this stress to ease off, or I fear I won't be able to cope.
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