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    • CommentAuthorbhv*
    • CommentTimeOct 27th 2018
    Doesnt sound picky. Sounds scary. People are in bed at 6:45???
    Jim would have had fits. I put different sheets on the bed one time and, at first he didnt think it was our bedroom. Then he took the whole thing apart and threw things all around the room. Then he helped me put the old sheets on the bed.

    Paulc, I've been so concerned for you and Leannah. I'm praying they find something that works well.for her.

    I keep feeling like perhaps I should have placed Jim earlier because the activities might have kept him happier, but I was really worried about liability if he lashed out at other residents or staff. This disease is such a Catch 22 situation.

    Hugs to you both.
    • CommentAuthorCharlotte
    • CommentTimeOct 28th 2018
    Wow - just took the dog out. Walking up the road behind us was a coyote. Jas was barking at it but didn't seem interested in her. I have heard them before and others have seen them in the park - first time I have. Weird it just kept walking not even interested in the dog or me.

    Paul - how are the changes in meds working?

    Bonnie - stop second guessing yourself. It won't change anything.
    Charlotte, Don't let the coyote fool you. He was paying very close attention to you and the dog. Wile E. Coyote was named that for a reason!
    • CommentAuthorxox
    • CommentTimeOct 29th 2018
    We should know if the Zyprexa is working this week and there is lots of room to increase it. She was agitated on Saturday but Leannah's sister noted that this is normal in the first few days of taking Zyprexa. Her sister visited yesterday and thought she was mellow. Things seemed to go fine with her Sunday aide.

    Leannah is getting rigid about time. Her sister arrived earlier than normal and Leannah kept thinking it was time for church earlier than normal in response. On Saturday she thought it was Sunday for a while (I visit on Saturdays) and kept worrying that the trick or treaters will be coming at church time. The ALF invited children/grandchildren of staff and residents to trick and treat last Saturday.

    If she enjoys having an aide but later doesn't need one once the meds kick in I will need to hire an aide for a limited number of hours a week to provide better companionship for Leannah.
    • CommentAuthorxox
    • CommentTimeOct 29th 2018
    Some good news today. A nurse called, another resident Ed grabbed Leannah’s arm and Leannah followed staff instructions to walk away. Staff has been praising Leannah.

    At dinner a woman took her top off and Leannah told her to put it on. The woman then told Leannah’s aide to help her and Leannah said “No, she is my aide” (no surprise that Leannah is possessive of her aide). This other woman then grabbed Leannah’s arm. At this time staff arrived and asked Leannah to move away.

    Leannah has had 3 aides, likes some of them, or at least one.
    • CommentAuthorCharlotte
    • CommentTimeOct 29th 2018
    Good news.
    • CommentAuthorCharlotte
    • CommentTimeOct 30th 2018 edited
    See we got hit with spam again.

    Went to see Art today. The last two weeks, ever since I brought him home that one day, he cries most of the visit no matter how much I try to distract him. He cries he doesn't want to stay there, doesn't like it there, wants to be home with me. So hard to go visit when that is happening. I would think after 6 weeks he would be more accepting, not less. He seems to be going into a depression even though his sertaline is double what he was getting at home. Maybe I have rested enough and regained myself enough to bring him home. Now that I am letting the cat go loose during the day, the stress of him letting her out is gone.

    When I got there, he was sitting in a chair sleeping. He had had a shower but his hair had dried uncombed and he was unshaven. Checked his butt crack - they are not making sure it gets clean and it was red so should have put more desitin on it. In his room his CPAP machine was on the floor, drawer was out of the nightstand, etc. They said he does it and they don't interfere with them. I replied, yes, but when it comes to an expensive machine like his CPAP there needs to be some exceptions. He also had one of his roommates shoes on. They are both black but his has two velcro closures and his roommates has three.

    I just received an email back from the social worker I can bring him home and stay on the program by sending him to day care and having someone come in a few hours a week. I think that would work - they could take him to the big showers.

    I thought because of the resentment, anger and hatred I felt toward him would allow me to not care what type of care or how he is dealing with placement. Boy, did I fool myself. Once all that left, I care more than I thought I ever would.

    I know, I know - probably making a mistake, but I can't deal with the crying. It stays with me all the time. I will start crying unexpectedly. I want to see him smile and laugh again, not be sad and looking miserable. Need to read the paperwork to see how much notice they need to be given.

    Added: I think I will bring him home this weekend - pick him up Friday and take him back Sunday to get a better picture of how much he has changed since placement. And see if his spirits pick up or maybe nothing will bring back the smile when around me.
    Charlotte, I'm crying with you. This is all so sad for everyone. I don't know what the answer is, but you have a big heart.
    • CommentAuthorNicky
    • CommentTimeOct 30th 2018
    Charlotte - I'm so sorry for what you're going through. It must be very draining to see him cry & wanting to come home. I can't even imagine what I would do if my husband cried every time I visit him. Your heart will tell you what is best for both of you. You're in my prayers ((( hugs))).
    Charlotte, I too am sorry for what you are going through. That is why I never placed Ron in a facility. I couldn't imagine that he would ever accept the change in his environment. After he was confined to a hospital bed at least he couldn't be too aggressive, but I never said "never". I figured at some point I might not be able to handle it. But with Hospice aides 5 days a week and paid aides 2 days a week, we got through to the end. As I look back now I think he might have benefited from the extra activites and stimulation.
    Charlotte, your experience with the poor care is pretty much what I had with my DH when he was in facilities for Rehab. I am very happy that so many on this forum found good care for their spouses in facilities...but I did not. And for the month or six weeks when I tried placing him in a really good assisted living, he was just like Art--cried and cried to come home. You or I would have loved to be in that Assisted Living. It was like a country club, and staff and other patients were so nice. And it was right in our neighborhood, and around the corner from my office. I don't know why he hated it so much. A nurse friend and one of our doctors went to see him just to see if he was just manipulating me and "pulling my chain." And he cried and begged them to let him go home. The nurse said he was breaking their hearts. Needless to say, I brought him home. He did not even remember that home was home...said, "Oh, is this our house? It doesn't look like it." Sigh. But he wanted to be home, and I was capable of doing, just like MaryinPA...I kept him home with home care in place. And you all know the rest of the story. There is no right answer for everybody, but for us what worked was to keep him home.
    • CommentAuthorCharlotte
    • CommentTimeOct 31st 2018
    You gave me an idea. I texted Paula and asked if she would go visit him to see if he appears to be as unhappy/depressed as he appears to me and day care. The fact he is not his happy self at day care since going into memory care gives me the clue it is not just with me. Also, that is why I will bring him home this weekend to see how it goes. I think I will keep him until Monday, take him to day care (unless the bus will pick him up), then have them deliver him to memory care afterwards. That way I won't have to deal with him crying. It sounds good to me anyway.

    Had my followup doctor appointment yesterday. I like him. He is a resident. The hospital here started a residency program, even built a building just for them. When I saw him in September we talked about the Wellbutrin possibly being what is causing the horrible hot flashes. Thinking back I started it a month before my hysterectomy. We were going to change but I started crying when he asked me how it was going. He said now would not be a good time to change it or we could. He suggested Cymbalta - anyone taking it? Will probably wait until January then work on getting off or changing.
    • CommentAuthorCharlotte
    • CommentTimeOct 31st 2018
    So Paula went to visit. He smiled when she got there but soon started crying that he wants to go home to be with Charlotte. When asked if he felt safe and secure there he answered no (which I put about 50% faith in that reply). She did get a picture of him smiling. I noticed it the other day but even more so in the picture how in 6 weeks his hair has gone from blond and gray mixed with blond mostly showing to mostly gray. When she arrived he was in a chair in TV room unshaven, hair not combed which is becoming the norm. Probably did not brush his teeth either.

    I made the decision I will bring him home and learn to deal with him without anger and resentment building up inside me. Pray that an opening comes up at Guardian Angels or a long shot - the Vet Home sooner rather than later. In the meantime I will send him to day care and have in-home help weekly. I will use that person to walk him down to the showers and shower there where he has plenty of water.

    I know, I know - probably foolish to do it. Eat my words of I would not bring him home.
    • CommentAuthorWolf
    • CommentTimeOct 31st 2018
    Maybe. But it's your life and you're living it. That's all there is.

    Personally it sounds to me like you learned (once you got a break) that you want him in your life even though the disease has reduced what he can be and once Paula told you how he really felt, you made that decision.

    I believe you learned things doing this that are going to help you going down this road. In the meantime, I know someone who's going to be very happy to hear this. No one knows what will happen and we're all going to have our time and find out anyway. I know one thing. 'Foolish' doesn't enter into this.
    Charlotte, back in the day, DH was put on Cymbalta for a congenital neuropathy in his lower legs. We weren't really looking for anything to elevate his mood--it was for the neuropathy. But it made a noticeable difference in that he seemed more pleasant and cheerful on the Cymbalta. His nephew was living with us at the time (about six years before DH died), and the nephew even said, "Don't ever take him off that stuff--it's great." So I'd definitely give the Cymbalta a try.
    • CommentAuthorRona
    • CommentTimeNov 1st 2018
    Good luck Charlotte as said before there is no right or wrong here. You do what you feel you need to do.
    • CommentAuthormyrtle*
    • CommentTimeNov 1st 2018
    Hi Charlotte, I'm so sorry this is not working out. You really needed this break.
    • CommentAuthorCharlotte
    • CommentTimeNov 1st 2018
    I called to ask for a copy of his medical and care records which I don't think they will do. Their story now is the pharmacy must have given 28 not 21 pills, which they didn't count when i dropped off the Rx. They checked and even the days he went to day care he was given that dose when he returned. I am wondering since the give out meds at 10 after he is gone on day care days, if they were giving him his sertraline before he left. I will count how many pills are left when I pick him and his stuff up today since it was a new bottle I left three days after he was placed. I told them all I wanted was good basic care but they could not seem to be able to do that considering in 5 weeks 3 times I checked and his butt crack was raw and bleeding. As normal, they have an excuse for everything.
    • CommentAuthorRona
    • CommentTimeNov 1st 2018
    Certainly sounds like this is not the place for him actually sounds like it is not the place for anybody how can they continue like this? Poor care not acceptable you would think there have been numerous complaints. Once again good luck Charlotte and so sorry you have to go through this.
    • CommentAuthorlindyloo*
    • CommentTimeNov 1st 2018 edited
    Charlotte, Ask to speak to the ombudsman. If this kind of thing is happening to your husband you can be darn sure it is happening to others as well. The ombudsman does not work for the nursing home, but for your state's Department of Aging. The nursing home will have to give you the ombudsman's name if you ask for it.
    • CommentAuthorJan K
    • CommentTimeNov 1st 2018
    Charlotte, I'm sorry you both are having to go through this. DH has been in four different nursing homes for respite, and poor care is why he is still at home. The things that happened to DH were bad enough, but the other things I saw and heard really curled my hair.

    I think it's strange that a poor exhausted and overworked caregiver is subject to being turned in to adult protective services for just about anything, but nursing homes can provide terrible care, and nothing happens. Why is that?
    • CommentAuthormyrtle*
    • CommentTimeNov 1st 2018
    Good question, Jan K.
    • CommentAuthorCharlotte
    • CommentTimeNov 1st 2018
    He is home. He acts like he doesn't even remember being away or the memory care place. I guess that is good. I am tired and he appears to be. I did count his antidepressant and from my count, they missed 4 dosages.

    Now to settle in. He doesn't understand why I am letting the cat run loose outside. He still remembers trying to keep her in. Oh well.
    Thinking about you this morning, Charlotte. Fingers crossed. As I said, I had similar experiences to yours when he was in the NY nursing home for six weeks for Rehab--the "best" in the area. Yeah, right. And then in the Ohio nursing home for Rehab.--same kinds of experiences. Unkempt, dirty clothes, belongings missing, not fed, untoward health symptoms completely ignored, no sense that anybody cared or was making any effort to know him as a person--very little kindness or caring--basically just in a warehouse for the staff to get their basic tasks done (not) and get out of there as soon as possible. And then of course the week in the other Ohio nursing home for Respite--I needed it desperately--but he came home in such noticeably worse condition that I was horrified and reported them to the skies. I've always been glad to hear about so many here who have had good luck with placement and with the care their loved ones received. I certainly did not have those good experiences. And it isn't because I'm a nit-picker or complainy-pants. Charlotte, I hope that in time you can get him into one of those better places you've mentioned, but it sounds like the one he was in was just a no-go. Boy, have you brought back memories.
    • CommentAuthormyrtle*
    • CommentTimeNov 2nd 2018 edited
    From what Charlotte described, there were 2 different problems. One was poor care and the other washer husband's unhappiness about not being at home. Sometimes these problems are related but it does not sound like they were in his case - even if he were in the best NH in the country, he might still have been miserable.

    Charlotte, I think that my husband adapted so well to LTC because he was so far gone that he did not have a good sense of his surroundings. Another benefit was that he was in a veteran's home (though it was run by the state, not the VA), which meant that it was mostly men and they had tons of volunteers groups doing good deeds - service dog visits, musical performances, ice cream socials, etc., in addition the the daily activity schedule.
    • CommentAuthorCharlotte
    • CommentTimeNov 2nd 2018
    Myrtle, that is a reason I have always wanted to place him in a Vet home. Yes, they are run by the state but you have VA presence there. The one my FIL was in in Bedford,MA was an 'institutional' type but the staff were great, there was entertainment on weekends that the families came to and if the weather was nice they were outside on the grounds. His floor was all men. Since Art seems to like being with the women, always was better friends with female workers than men, he is not bothered by women there. Guardian Angels won't have all the interaction the Vet Home would but it is closer.

    Last night was different. It was hard to tell if he had memories of where he spent the last 6 weeks. He is confused some, forgotten where things are, but he has remembered to fill the toilet bowl up after using it which I don't like - it fills the tank too fast. With him gone I could go 3 weeks, with him here it is weekly. We will see how it goes now. He did start crying last night when I told him coming home was only temporary until a bed opens up somewhere else.