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Default Apr 01, 2019 at 01:56 AM
  #21
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.
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Default Apr 01, 2019 at 10:08 AM
  #22
Attagirl, Rose.
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Default Apr 02, 2019 at 04:38 PM
  #23
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.
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Default Apr 02, 2019 at 06:37 PM
  #24
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?”
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Default Apr 02, 2019 at 07:32 PM
  #25
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.
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Default Apr 02, 2019 at 09:36 PM
  #26
I ate and took my pills. They provided that nice temporary lift that's fizzling out now.

He's in need of extra care tonight. I'll manage okay. He keeps developing more problems on top of his old ones. It's outpacing my ability to keep up. I'm not as young as I was when he first started needing care, which wasn't young either. He's lucky he got as much out of me as he did.

Aging is taking a toll on me too. Today I can just about walk on my left foot - Achilles tendinosis. Tomorrow I have to take him to the VA for some tests.

I better put some calls in tomorrow and make appointments to visit some facilities on Thurs. when I don't have a busy day. At least, I've made a decision. Something in me snapped, and I know I have to arrange other care for him. I'm resigned to that, and I'm resolved to proceed. There's risk involved. He's not going to get great care . . . not in the Medicaid-reliant dumps in the backward state where I live. I'll visit and do some hygiene and wound care. But I'm going to do some letting go. Till now I really never have. I'll have to. I'm just spent. More mentally than physically. Part of that is him not being the most cooperative or responsible person to care for. Some of the results of that are going to have to be on him.
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Default Apr 02, 2019 at 10:34 PM
  #27
Yes, I'm afraid that's true, Rose. It won't be 100% comfortable for you because you are a giver. But you are human and you can only take so much punishment. Hope you get some sleep.
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Default Apr 03, 2019 at 11:08 PM
  #28
I made salad and cooked fish. I served dinner. I offered companionship, as we ate watching evening television that we like. Soon as he eats last bite on plate, he likes dirty dish removed. I take away the dishes to kitchen. I start to scrape dishes and clean kitchen. He lets out a loud moan. I respond. He wants TV shut off and his bed prepared and various lights put out.

I'm hurt. Before I can even clean up after supper, he is ready to be attended to so he can get settled for the night. I tell him, "I'm not a servant to be dismissed after the meal . . . then summoned for your next need."

People eat together. Then they spend part of the evening together. One is allowed some time to clean up. Then one is encouraged to relax, before going on to the next caregiving task. I'm not someone he hired. He forgets who I am.

This is why I'm falling apart. It is not the work. It is being regarded as though I were a household appliance.

It feels awful.
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Default Apr 04, 2019 at 12:19 AM
  #29
Maybe he doesnt know whats going to happen next when you leave the room, he just knows that hes alone. And his cognition at this point is such that he cant initiate things very well for himself? Or maybe thats his new normal - after dinner, he needs to start moving towards bed. If he dilly dallys for an hour, he wont have the strength to get to bed?
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Default Apr 04, 2019 at 12:56 AM
  #30
There is some truth in all those things, Luna.

I ask myself am I being unfair. Maybe I grieve for when things were different.

But I've been around a lot of people with dementia, many worse than his. Lots of them could convey some appreciation.

To be fair, he does get confused when he can't see me. Sometimes he would call my cell phone when I was still in the house. He never, ever did have much understanding about helping another person's morale.
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Default Apr 04, 2019 at 01:12 PM
  #31
Rose, I think the way he treats you is awful and I'm glad you're able to speak up and say how you feel. It really doesn't take much for a person just to say, "Thank you for all you do," and/or give you a little hug. That really doesn't take all that much effort and it makes so much difference.

It's too bad there's no one attending to your needs with the meticulous devotion that you attend to his.

I hope you are continuing looking into giving yourself at least some time off from this demanding patient.

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Default Apr 05, 2019 at 02:56 AM
  #32
I visited some facilities today. The VA gave me a list. Some I'ld even worked in. Some I knew not to even consider. I picked out a small one that was very clean. The admissions coordinator there said they would have a bed Monday. I looked at the Medicare website that rates nursing homes. This one I liked was rated above average. I found an alternative facility that also had beds opening up next week. I let the VA social worker know my choices. I may hear tomorrow that we have a place reserved. He might get admitted to one or the other early next week. The VA will pay. It will be a two week stay. Now I'm so glad I started this process. I just have to manage a few more days, and then I won't be on this 24 hour a day treadmill.

During the two weeks, I can gain some perspective. His care needs have gotten much heavier. I may need to stop being his around the clock, 7 days a week, source of everything. Besides the strain on me physically, I keep feeling demoralized. He's never been good at giving credit or voicing appreciation. He takes me utterly for granted.
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Default Apr 05, 2019 at 08:31 AM
  #33
Rose, I really feel its time to reclaim at least parts of your life. You cant avoid your meds and you know you are depressed.. I know how hard. It is. My partner isn’t terminal or constantly hospitalized but he has life threatening illnesses and has throughout his life chosen to ignore them and it all falls on me. It sucks the life out of me and I neglect my own issues. He just does not get or chooses not to understand what it does to me tho I keep trying to explain that. I think you and I have serious issues with co-dependency, letting our instincts to take care of others push out taking care of ourselves. This phenomena is not confined to women, but traditionallly we have had the nurturing caretaking role and many women have lost themselves in nurturing others. When it is obvious that we are not taking care of ourselves, we have to break out of the rut. Kudos for getting the home aide. I urge you to go forward on your list of steps that can be taken to gradually or wholly reclaim your life. We’re with you, lady, as are the millions of caregivers across the country. I read that there is legislation in Congress to do a lot more for caregivers since this is such a common situation. Try to get out of the house when the home aide comes. You could sleep when he does. Oversleeping is often from depression as You know.

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Default Apr 05, 2019 at 09:55 AM
  #34
This morning I'm taking him to one hospital for imaging to check for shrinkage or spread of cancer. Then we go to a different hospital (VA) for bloodwork. I have no attendant today. Physically lifting him is getting tough. I hope a nursing home can accept him early next week. His adult kids are encouraging me to take advantage of this opportunity for a break.

He and I got irritated with each other last evening. Maybe I will find myself happier when he is in the nursing home. It's possible I may decide to request a permanent bed for him.
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Default Apr 05, 2019 at 11:23 AM
  #35
I dont know how you are doing this work. I can barely take care of myself. I admit, i am lazy and depressed and unmotivated!
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Default Apr 05, 2019 at 11:53 AM
  #36
Last night he was okay with going to the nursing home, so I can have this break (to get his apartment cleaned and straightened up.) There wasn't any argument over that. I thought it was going to be a good evening. I'ld brought in a rotisserie chicken, which he enjoyed. I tucked him in bed as comfortable as I could arrange, after showering him and changing dressings on him.

We were getting along well. I was telling him how I would try to get a better hospital bed ordered and delivered, during the respite period. I praised him for cooperating with the care I was doing and told him he was doing well, considering he had two sore skin problems. (Reaction to his treatment.)

When I thought I had him settled, I went to phone my sister. As usual, soon as I went into a different room, he was loudly calling me. Do this, do that. I told him I was going outside to sit in the car to make my phone call, so I could have a phone chat in peace. I returned 45 mins later. He was acting nicer. I told him my sister sent him a kiss, which I gave him.

This was midnight, but he suddenly wanted to get up and for me to fix him something to eat. I was okay with that and looked for what I could get for him. Then somehow we started fussing with each other. Next I put him to bed again. Every time he moves, I'm physically lifting him. Then at 2 a.m. he wanted to get up again. I couldn't talk him out of that, so I helped him up and to his chair. Earlier I had cried thinking I'ld be sad not having him at home for 2 weeks. Suddenly, @ 2:30 a.m. I started looking forward to his going away to the facility.

During all this fussing around after midnight, I told him this was getting to be too much for me and, also, that we just can't seem to be at peace with each other. He said the problem is me. Finally, we both were asleep.

Right now we are at an xray place where he is getting scanned. My heart feels cold toward him. After this, I take him to the VA to have blood drawn. Then a nurse is coming to see us to bring dressing supplies for the sores he has developed. Then I have to start cleaning and cooking.

Right now my heart is cool toward him. That usually blows over. But I am glad we'll have some time and space away from each other. (Though I'll probably be at the nursing home everyday, bringing him stuff and picking up his laundry.) Right now I feel like I can't go back to even just a few more months of what I've been doing.

Soon my heart will soften. If I get the apartment cleaned up nice, while he's gone, I will feel organized and less stressed. But we don't get along. There is all this turmoil. It's not going to change. Our arguments have gotten a bitterness to them. I've gotten resentful. He never can put himself in my shoes. It's going to get harder, as he gets sicker. Last night, before dinner, he said, "I appreciate you being here." That pleased me so much and warmed my heart. Yet, still, I thought: "Sure . . . I'm handy to have around."
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Default Apr 05, 2019 at 12:01 PM
  #37
Maybe you should talk to someone? Is there a group or something?
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Default Apr 05, 2019 at 12:17 PM
  #38
I'm so sorry you' and him are going through all of this, Rose76 You're doing the right thing by taking him to a nursing home and taking good care of yourself! I'm really happy that you're going to have a break from all of this soon! Please do consider finding a permanent bed for him there at the nursing home! You've been through so much! It's time for you to dedicate some time for yourself! Please don't feel guilty about taking good care of yourself! You're JUST AS IMPORTANT as he or everyone else is! You ARE IMPORTANT, you MATTER ands you're WORTH IT! Please keep repeating that to yourself until you believe it because IT IS TRUE! I hope things will get better soon for both of you! I'm so sorry you're struggling! I'm so sorry you have to deal with such a difficult situation! You don't deserve to get through all of this at all! You don't deserve to suffer at all! Nobody deserves to suffer at all, certainly not you! Take great care of yourself! Please don't give up hope! Try to hang on as much as you can! I completely agree with what all the wonderful people on this thread have already wisely said better than I ever could! You've been given lots of great, wonderful advice on this thread! I'd suggest to follow it if you can! I completely agree with unaluna! Try to talk to someone else that may be able to help you get through all of this if you can and want! Anyone or anything that may be able to help you get through all of this! Of course we're all here for you as well if you need support! Remember that we're here for you if you need ANY KIND OF SUPPORT! We all care about you here! We all love you here! Feel free to vent and write here as much as you need it and want to! You know we'll never judge you! You know we'll never abandon you! I promise you that! Sending many hugs to you, Rose76! Stay strong, stay safe and take great care of yourself because YOU DESERVE IT and YOU'RE WORTH IT! YOU ROCK! PLEASE REMEMBER THAT!
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Default Apr 05, 2019 at 12:38 PM
  #39
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.

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Default Apr 05, 2019 at 12:45 PM
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Originally Posted by unaluna View Post
I dont know how you are doing this work. I can barely take care of myself. I admit, i am lazy and depressed and unmotivated!
Me too, Una. Me too. To me, Rose is, like, a SuperBeing...
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