Burned out and depressed.

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.

Sending major hugs your way.

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.

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.

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.

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.

Just personal musings...
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?

Just checking in Rose to see how you are doing.

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.

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.

I woke up after having a nightmare about my s.o. and I being exposed to COVID. I think the virus represented all that I feel threatened by. I feel so threatened. It's a horrible feeling. It's not even really me that's so threatened, but my s.o. who is. I'm just trying to protect him. I feel inadequate to protect him.

(((Rose))) I honestly wish there was something I could do to help other than just listen and offer sympathy. You have so much on your plate that you juggle. I wish you just had someone to lend you a hand even once in awhile so you could just relax and take a breath.

Raindrop - your post above is of more help and consolation than you realize. I am alone here in the apartment. I woke up here in the wee hour full of apprehension about how I'm going to proceed. To see some hugs and your post gives me hope that I don't have to be alone . . . that I have to have some faith in the humanity of others . . . that possibly I'm trying to do too much alone . . . and maybe it doesn't have to be that way. In short: kind responses here inspire me that I'm not alone in an empty universe.

I do need a hand. This apartment is a mess. I had been unable to keep up with the 24 hr caregiving, housekeeping, cooking and shopping. I became badly disorganized. Later today someone is coming to help me with some chores. I need to embrace getting that help, which means looking at possibilities in a new way. I try to do too much singlehandedly. I'm floundering on the rocks here.

Sometimes mercy breaks through the clouds. Before COVID the VA offered to pay for an agency to send some real nurse's aids to help me care for my friend. Unlike the "home attendants" that we've had (who don't have much caregiving skill) these persons was able to do a lot. Then when COVID hit, we stopped having this new better help. I tried to do everything myself and got overwhelmed. Then my s.o. lost his ability to stand, so I had to have help to get him in my car to go to see his oncologist. I let one of the aids come back. She was only supposed to show up on a very limited basis, controlled by her agency. But she and I got a bright idea. She was largely unemployed, or underemployed. I could pay her privately to be here when I need her, for what I need her for. (We're not supposed to do this, but I had to think outside the box.) My s.o. is still in the hospital. In a few hours this nurse's aid is coming to help me with household chores and errands. I have bad tendonitis in a few places that limits what I can do physically. This person is young, healthy, strong and good at "heavy lifting." She can help me clean the patio, so as to be in compliance with the demands of the apartment complex manager, so my s.o. doesn't get an eviction notice. When he was more well, he started a small garden of rose bushes that have become overgrown and messy looking. I tried to incorporate gardening into my schedule, but I couldn't keeo up. Management here got stricter about the appearances of patios, so now my s.o. is one notice away from being in trouble for having bushes grown to over 5 ft in height and a patio strewn with pots and implements. I have to clear all that up. Today I will have a helper who can lighten my load. She can earn some needed cash in return. My s.o. can readily afford to pay for me to have this help. I just didn't know how to recruit it. Then this capable person apoeared at the door. I need to make the most of finding her.

Delegating doesn't come naturally to me. I better learn quickly how to do it. My new helper said something smart: "While your s.o. is in the hospital, I could help you with laundry, cleaning and grocery shopping. We could get so much done during this time that he's not here needing constant attention." That's the plan for today. I've got to sort out the confusion that surrounds me. I'm scared I'll fail . . . that it's too overwhelming. I guess one breaks a big job down into smaller jobs and knocks them out of the way, one hour at a time. A lot can be done in an hour. I have to get passed the paralysis of depression.

Stuff piled up because I couldn't keep up all on my own. COVID came to town and I tried to do that. Like the rest of the country, I've got to "open up." I need hired help. My new helper is careful about COVID precautions. I have to trust her a bit. That requires a changed mindset, on my part. I've gotten so overtaken by fear and dread. I hope I can change.

I had help today - 2 people. They got some heavy lifting done. The patio is now compliant with the apt complex manager's nit-pickin demands. No reason now to fear an eviction notice getting slapped on the door.

Got through another day. Eliminated a pressing problem. Tomorrow he comes home. I will have a helper tomorrow who is a big help. I'll get through tomorrow. I just have to keep going.

My sweetheart died in my arms this morning here at home. Despite the turmoil in our togetherness, we loved each other very much. I am already missing him terribly.

I'm sorry. No words can suffice.

Oh, Rose. Its like he waited for the last real Memorial Day. And you were able to be with him, as you had hoped. At least there is that comfort.

I hope the next few days, dealing with his children and the VA, etc, are not too difficult.

Thank you both above for keeping an eye on my thread. His family and mine are all 2000 miles away. So I don't have the natural supports of having family close by. But I knew I would be quite alone when this day came. I think I can handle that. Then COVID makes everything so different and abnormal. His family have been caring toward me. I guess I will fly back there. I guess there will be some kind of getting together and some kind of a wake. His daughter in NY just told me there would not be a normal funeral service . . . no funeral Mass. That will seem strange. I've always liked going to funerals. I've always liked the quiet conversations I would have with family members at the funeral parlor and then afterward at a reception after the burial. His daughter had very nice plans all laid out. Then COVID changed everythjng. I think protecting the health of the living is paramount.

I have to try and sleep now. One way or another, everything will work out. I have a sister who will look after me wben I get back there. It will be good to see my family that I haven't seen in 6 years.

Grief is tough, but I've never found grief as bad as depression. Both of my parents passed away, and I went through normal grief with those losses. I'm in pain now, but I'm not depressed. As long as I don't get into a trough of depression, I'll be able to cope. I truly believe life still holds possibilities for me.

Right now I need to sleep.

My condolences on your loss.

Thank you.

Finally, the phone calls stopped long enough for me to sleep.

Now I am awake and surrounded by his absence. I have to fight off depression or I will be in trouble. I need to take a shower. I need to make a list of things to do tomorrow.

Never made it to the shower. Fell asleep. Been awake for a little while. Need more sleep.

Today my boyfriend's family put a bunch of stress on me. A year ago, I had his suits dry cleaned. I laundered and ironed his best shirts. I wanted to carefully box these things and send them to his daughter. She told me not to. She planned to buy a navy blue suit that she wanted to pick out. Fine. Now today I hear the family wants me to send clothes for the funeral. So I gathered up a bunch of stuff, including shoes, sox, ties, underwear suits blazer jacket and dress pants. It cost me over $400 to pay FedEx to box and ship this stuff to arrive the next day. - tomorrow.
I even put an enveope with a thousand dollars in it that tucked in a breat pocket of a jacket. I said if you don't like these clothes, buy a new suit.

I felt they kept putting things on me.

I missed going to my PCP to get my prescription for Vicodin. So i have to rush to get that in the morning. I was hoping to fly on the plane transporting my boyfriend's body. That could be anytime tomorrow. Could be early.

Calls and texts went back and forth. I said the were inconsiderate for asking me now to box up clothes. Finally I called my bf's daughter at 10 pm. our conversation got to be a crying competition. one of us hung up. Next I got a call from her husband telling me to never call his wife again. So I'm now a Piece of crud in there book.

So I don't see me going to this funeral, or whatever they do in NY.

I've had blowups with this daughter before. She offen calls months later apologizing.

So now this daughter is disgusted with me
Her husband called me to tell me never bother her again. Well I sure wont.

Do I guess i'm not wanted at this funeral.

now i'm going to sleep. II've never beem able to feel very welcomed by this famly.

After gettkng yelled at last night, I think I am better stsying sway from tbem.

i am so sorry for your loss. you did so much for your boyfriend. my deepest condolences

His family should appreciate you more because of all the things you did for him. They will not change between now and the funeral. Perhaps you will all go your separate ways after the funeral. Some of the funerals I have experienced were crazy. Given how his daughter acted during the phone call, she is likely to be a piece of work during the funeral.

Do you want to go to the funeral? Usually there are some people at every funeral who act respectfully to all that you can mix with. I tended to quickly express my sympathy to everyone related or connected to the person who was lost and then find a quiet group to mix with. If you decide not to go--my POV is that funerals are for the living, not the dead. You honored him by the way you treated him when he was alive. He will always be a part of you. When you are with someone for 35 years, they were the most influential person in your life. It is terrible if his family is not acknowledging that. If they aren't, I hope they see the error in their ways; however, emotions run very high during funerals.