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Default Apr 05, 2019 at 12:48 PM
  #41
And Rose, I have to tell you how wonderfully inspiring it is to see you taking these steps for yourself. So often people get stuck in a hopeless downward vortex and believe they absolutely cannot do anything for themselves, when that is just what is required.

I love that people are encouraging you, strengthening you. Please hang in there. Take it one day at a time.
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Default Apr 05, 2019 at 12:50 PM
  #42
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Me too, Una. Me too. To me, Rose is, like, a SuperBeing...
I agree with the both of you . She is doing the work of many with little appreciation.

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Default Apr 05, 2019 at 08:54 PM
  #43
Thanks to all of you, and hugs to everyone. I just have to get through to Monday morning, when I take him to the nursing home. I just woke up from a mini-nap. I'm tired and drained.
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Default Apr 06, 2019 at 01:25 AM
  #44
I felt like I couldn't make it to Monday morning. I fell asleep in a chair and woke up to find that my bf had gotten out of bed and made his way to a chair without help. This is dangerous. Normally he uses a walker, but mostly a wheelchair. I got angry.

Slowly it dawned on me that I'm blaming him for behavior that probably is not under his control, as he has significant dementia that worsens when be is ill. Then it dawned on me that I am angry because I am trying to manage a situation that has become beyond what I can manage, singlehandedly at home. I called his adult daughter, who was supportive and told him to listen to me. I thanked her, but knew anyone admonishing this man was going to get nowhere.

Then it occurred to me that, by Monday morning, the 2 infections he has would probably get worse. Then I asked myself why I do so have to wait for the nursing home to help. So I called 911 and said I have a sick man who cannot cooperate with getting the care he needs at home.

I told the paramedics about his skin sores getting worse day-by-day and his behavioral problems getting dangerous. I even got my bf to agree he needed medical attention.

So now he's in the ER sound asleep in a bed. I am here waiting to talk to whatever doctors come by. I feel relieved that what was becoming a crisis may be about to get reasonably sorted out.

I'm hoping they will keep him here till Monday, during which time they can treat his two infections. He was not wanting me to care for his two wound areas. Here they can give him stronger pain medication and even sedation, if that's what it takes for him to tolerate care for his back. This started with a reaction to a toxic cancer drug that caused this awful rash that became 2 open sores. He can't stand me touching them. Well, why should he? I was making up my own treatment, which the oncologist encouraged me to do. But these areas appear infected and are becoming ulcerated. It should be a doctor familiar with this reaction to prescribe the treatment and dressing. And I'm not taking him out of here till they do exactly that.

Certain things just did not occur to me, until I became totally exasperated. I needed to realize that I am not the only party responsible to address all this. The hospital that treats his cancer has a duty to evaluate and treat a serious adverse reaction he is having to his cancer medication.

The staff here have been very nice. The feeling I had of total exasperation has lifted. My bf and I just needed more help - now - of the right kind. I think we've found it.

I'm grateful for all the encouraging posts. Sometimes I try for too long by myself to fix a problem that others, besides me, should be working on.
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Default Apr 06, 2019 at 04:56 AM
  #45
My bf will be admitted. What a load off my mind and shoulders. Everyone at this big hospital has been so nice and eager to help us. I thought I'ld have to fight, threaten or plead. None of that was needed. They seem to pretty much see the situation as I see it. It's amazing how reasonable people can be, if you bring a problem to them in a way that makes them responsible to help solve it.

What through me off was that one cancer doctor and the nurses who come to the home encouraging me to just do what I thought best and seeming to have great faith that I could singlehandedly care for this man's maladies, which were worsening. I was allowing some healthcare professionals to get away with not having to take much responsibility, so they didn't. The healthcare system will happily ignore deterioration in an elderly person. You have to toss that problem right into their lap and say, "Don't you think something is really wrong here, and what do you think should be done about it?" Then let them figure it out. Amazingly, they may do exactly that.

Days of being alone with my bf's deteriorating condition were getting me into an awful state of mind. The posts that I read Friday were very uplifting and, I think, helped me to believe that there were alternatives to how I was approaching things. I just had to let go of what was getting me nowhere and expect to discover a better option.
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Default Apr 06, 2019 at 05:14 AM
  #46
All of the above is not to say that I haven't also been plagued by my bf expecting me to meet his each and every need 24/7. I am making more allowances now for him being very sick. That doesn't mean I should go back to allowing him to have ridiculous expectations. But the real problem was me having ridiculous expectations of myself.
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Default Apr 06, 2019 at 10:18 PM
  #47
Yes, and that may be the hardest part for you. Maybe you have to learn to be a little selfish. Dirty word, yes?

Awhile back I listened to some lectures by a psychiatrist who was talking about the Lou Gehrig syndrome; that those people whose self-abnegation was complete, who gave everything they had to help others, were destined to succumb to sickness themselves.

I realize this is a little at odds with some philosophies, which advocate laying yourself down completely for other people and letting them walk all over you.
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Thumbs down Apr 06, 2019 at 10:47 PM
  #48
I came home, slept a few hours and then just have kind of vegetated. What horrifies me the most is that the apartment is so messy. It's just a bunch of stuff out of place, piles of laundry, dishes from the last 2 or 3 meals piled up, unopened mail, unmade beds, clean laundry that never got put away and boxes of supplies for care needs piled here and there, unemptied waste baskets, sticky kitchen counters, clothes not hung up.

I wonder how many other people, prone to depression, find that they become very disorganized after a prolonged episode of feeling demoralized . . . or even after a not so long interval of that. When I'm in a positive frame of mind, I can demonstrate perfectly adequate homemaking/housekeeping skills. I'm actually good at cleaning and organizing. But it astounds me what a disorderly, chaotic environment I can create in less than a week of being in the throes of an emotional downturn. I don't know where to start!

But it can all be sorted out, starting anywhere, just putting things where they belong. It's not like the place got flooded or hit by a tornado. Still, I look around, and I feel intimidated by the size of the task at hand. I think, "Will I ever straighten all this out and get things back to normal? Haven't I just let too much "go by the boards," so that I will never catch up?"

At least he's not here bemoaning how bad the place looks and pointing out what an eyesore every corner of the house is. I won't have that pressure for awhile. I can relax and make a steady effort, without hearing, "When are you going to start this, and when are you going to finish that?" Lately, I've felt under constant pressure: "I need some water. What are you making for dinner? Isn't there a decent movie on TV? I'm cold; can't you turn up the heat? When you gonna vacuum this rug? I thought you were going to write checks today? Do we need all these lights on? Can't you straighten out those throw pillows? Would you mind closing the blinds? You better gas that car up! Do we have anything sweet in the fridge? What are you doing now? How long you gonna be on that computer? I could go for some coffee. Here, take this plate away. Aren't you going to bed soon?" He is not a tyrant, but more like a relentless noodge. It's almost comical. I know he wishes that he could get up and do things, but give me a chance.

I feel kind of at peace now in the apartment alone. I'm telling myself that even a small accomplishment, like getting the dishes done, will make me feel better. I could listen to the radio, and it wouldn't seem so tedious. Once I get the ball rolling, momentum will take over. No one is timing me. I can take breaks. No one will criticise how far I get tonight. Best if all, I have a good two weeks of all that pressure being off me. I can do one thing at a time. When I wake up in the morning, I can sit quietly with a cup of tea. I won't be immediately "on duty."

I think I'm going to be okay. He called from the hospital and he was okay. He told me to take it easy tonight . . . that I didn't have to run back there. That was unselfish of him. I'm very glad I called 911 last night. Now everything isn't on me.
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Default Apr 07, 2019 at 02:42 AM
  #49
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Rose, I can't imagine what you're feeling. The anticipatory grieving is wearing you out. It's obvious you aren't taking care of yourself but that's hard when you're running on empty.
Can you look into hospice care for him? Maybe then you could focus on you . I wish I had more to offer.
I very much appreciate you mentioning anticipatory grieving. We all know that those we love will not live forever. By a certain age, most people have been through loss preceded by anticipatory grieving. It is part of life.

In the case of my guy, doctors started telling me a few years ago that his demise was around the corner. I don't fault them for giving him that prognosis. It certainly seemed justified. His family have visited multiple times, each time thinking they were seeing him for the last time. I've spent two Christmases with him, where each time I thought that was our last Christmas together. Last Spring I tended the garden he started, wanting him to fully enjoy the last time he would see his flowers bloom. Now Spring comes again, and the plants want tending. But I haven't had time for them.

How many times do I have to put my heart into another "last time" only to have to do it again? How long does the Grim Reaper get to show up at the door, only to hang around and hang around, and his shadow never leaves? He threatens, but then holds back. Not so my guy can recover, because my bf doesn't recover. He just lives on with worse and worse afflictions and debilities. Not so I can mourn and pass through the mourning, because the ordeal isn't over. We're both trapped in this waiting place. He's a positive thinker. But I forget how many hospital admissions ago it was when he said, "I keep coming to the hospital, but I don't think I'm going to get better." What stunned me was I had known that for many months, and he was just realizing it.
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Default Apr 07, 2019 at 04:36 AM
  #50
I spent all of Saturday in my head. I accomplished nothing.

I hope tomorrow I will use my new situation (of not having to do caregiving around the clock) to start to improve my life. It feels like there is still something very wrong with me.

I have to make some small goals and meet them. Any encouragement will be appreciated.

Now I might sleep. Too spent to do anything now.
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Default Apr 07, 2019 at 12:40 PM
  #51
[I have to make some small goals and meet them. Any encouragement will be appreciated.]

Don't worry, Rose, you will. You will. When you've come to, so to speak, you'll start cleaning and organizing. You won't be able to help yourself!

And any change of this magnitude, as much as it had to be made, is bound to bring some uncomfortable feelings along with it.
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Default Apr 07, 2019 at 08:21 PM
  #52
Rose how are you doing today? Is there a little weight lifted off of you ? I've been thinking of you and am in awe of your strength. Now is the time to take care of Rose.

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Default Apr 07, 2019 at 09:22 PM
  #53
I'm a bit better. I did do the dishes and just a bit of picking up and made my bed and took a shower. Soon as I dry my hair, I'm going to the hospital. Also I ate something good.

But my stomach is doing somersaults. That's rare for me. He must wonder if I stopped caring, as it's so late. But I hardly could pull together today. But I'll get going now.

Thank you for thinking of me.
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Default Apr 07, 2019 at 10:17 PM
  #54
Good luck at the hospital, sweetheart.
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Default Apr 08, 2019 at 03:07 AM
  #55
I'm staying overnight at the hospital. He is in a private room. There is a chair that opens up into a bed. They say I am welcome to stay. A nurse supervisor even made up the bed for me. It's comfortable. (Hospitals today are very into good public relations. I've lived long enough to have seen a dramatic evolution in how hospital staff talk to patients and families.) I feel comforted. A specialist will see my guy tomorrow and recommend how to treat what's going on with him - a reaction to a drug that started as a rash and then became like areas of 2nd degree burns.

This morning, while trying to talk myself into not vegetating, I got a call from a friend that I'ld not spoken with in a couple years. It was such a warm, caring call and so unexpected. I can't adequately express what a nice surprise this was. Once in a while life tosses a lovely bouquet of the sweetest blossoms right into your lap, on a day when it's the last thing you could have anticipated.

After the call, I was kind of in a state of emotional overload. But I'm settling down. The phrase "change of this magnitude" resonated deeply with me. What I've gone through internally over the days since starting this thread has felt like an internal earthquake. I am very satisfied that I've made sound decisions and have a good plan, though the process of doing that felt wrenching.

I am so grateful for all these encouraging posts. At times I've felt a wreck. Now I see the light. I was flying through a storm. Now I think I can land safely.
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Default Apr 08, 2019 at 01:33 PM
  #56
You can. You have the strength and intestinal fortitude to make the adjustment. I'm certain of it.

And what a blessing, the call from your friend. There is good stuff out there. It's not all storm und drang, even tho the news says it is.
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Default Apr 08, 2019 at 01:45 PM
  #57
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Once in a while life tosses a lovely bouquet of the sweetest blossoms right into your lap, on a day when it's the last thing you could have anticipated.
As true as it is that "[blank] happens," good things also just happen.
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But my stomach is doing somersaults. That's rare for me.
Rare... Do please keep an eye on this for your own health.

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Default Apr 08, 2019 at 02:08 PM
  #58
(((((((((((( hugs ))))))))))))

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Default Apr 09, 2019 at 02:04 AM
  #59
Hugs to all above. When I think of our recent irritations with each other, especially my own episodes of agitated hostility towards him, it seems so petty now. I'm still at the hospital, staying the night, wishing wishing we could stay here as we are for a good while longer. I brought him treats from the gift shop and cafeteria - sweets that he eagerly relished like a child. I have to stay in the moment; if I think forward in time to when I can't do that, I dread him being gone.

Nurses here are kind to me. I can be kinder and more patient with him because I feel supported. He in turn is sweeter to me, kissing my hand earlier. The two of us were overly alone together and mutually depleted. We needed help. Once in a while, life gives you what you need.

Man's humanity toward man makes hardship and sorrow bearable. I have to remember that, when he is gone, that doesn't have to be the end of my being needed by someone. The world around me is in no danger of running out of need. And people are not so awful that no one will care that I am in need.

We each need others to care for and and we need to be cared for by others. In the intensity of the great mutual need he and I have for each other during this time, it seems like he is my whole world and that, with him gone, nothing important will be left to me. But that's false. I'm focused intently on him right now because that focus is needed. It makes the rest of the world seem to disappear. When my caregiving of him stops being needed, I can notice all that is around me that I've become blind to. This world will not be barren of things that merit my attention . . . of persons worth knowing. In life there is always something to do worth doing, if you are willing to keep trying. Life will keep being interesting, if I just take an interest in it. I have to remember that.

I should make a "To Do" list of some things I'ld like to do tomorrow - either because they need to be done, or because I'ld just like to do them - so that I move along and my mind doesn't stagnate just perseverating at what happens to be in front of me. I've got clean laundry at the laundromat that's been sitting there for days. I have a week's worth of mail not yet opened. I've been wanting to visit a church and to call a friend I haven't talked to in a while. There's a lot I could get done, if I budgeted my time and followed a little schedule. That would leave less time for morbid thinking. Accomplishing a variety of little goals in a short span of time can be very satisfying and refreshing.

Once in a while I come up with some good advice for myself. Writing helps that.
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Default Apr 09, 2019 at 07:52 AM
  #60
Thank you.
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I can be kinder and more patient with him because I feel supported.
This is one of the many things in your post worth focus.

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