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 How to make the best decision on placement. 
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Good luck, Gerry. Maybe something will click that makes this work. When my mother thought she was working at the center (she had been worried about not having a job), she accepted it.

Garnet


Wed Dec 23, 2009 5:50 pm
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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My mom has just moved 4 times in 2009. She didn't like the first place, liked the 2nd but had met a man in the first place and they both moved into the 3rd place. Then his health deteriorated and her dementia progressed.

Just before christmas she threw a tantrum in a public area of place 3, and the 3rd place declared her a danger to herself and others, forcing a hospital stay to work out her meds. I took her home with me for XMas and she moved back to place #2 which was always warm and caring.

Now place #3 tells me it's only a 30 day trial and if her behaiors aren't ironed out she can't stay. They don't have a bed in the memory care facility attached to place 2, or a female bed at their sister facility.

Meanwhile, her caregiver who was working with us in the home for a couple of years and continued to work with her for outings/shopping this past year completely crapped out on me (again) and didn't work the flanking holiday days she had promised. She is unreachable by phone and e-mail.

I wrote a note to my mother's doctors begging her to adjust her meds to eliminate anything that could be causing problems and to adjust her moods. She really can't walk now so the sinemet, which could be a problem, could probably go.

Sometimes my LO is a perfect lady and appropriate. She was difficult and refusing to take her pills with ME yesterday afternoon, so I see what they are talking about. She's a tiny little woman with absolutely no strength so I don't really get how she's less appropriate for this place then other patients. She lives across from a woman who constantly screams for help, and before she moved from this place the last time she was across the hall from a man who screamed constantly.

She's more intermittant.

With her hospitilization and forced exit from place 3 happening just before Christmas I am totally wrecked. With a busy full time job this is hard. What am I saying... this would be unbelievably hard if I were retired and had no other concerns.


Wed Dec 30, 2009 2:14 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Frank went to the Senior Care Program last Tues. & Thurs., he came out with some wild stories and said he had to figure a way to get out of there. On Wed. he kept asking if he had to go "today", and when he'd have to stay overnight. I think he's confusing it with a nursing home. I also think the locked doors bother him, but I reminded him unless I'm there with the car, he couldn't go anywhere, so just wait until I come in. I don't think he likes it but he just kept getting ready on Thurs. He was concerned that he didn't have any money for his lunch and was embarrassed that he couldn't tip the waitress. He took his wallet with $12. on Thurs, but was so concerned that someone was trying to steal his money that I suggested he leave his money at home because the ins. co paid for everything.

He never came back from his stay in rehab. He goes out to check the car and truck a dozen times a day because he says someone is trying to take them. I suggested we keep them locked all the time and he agreed, but still sees people sitting in them. Yesterday he went out, I thought to check, but was gone for 5-10mins so I went out to check. He wasn't there and came walking up the street 1/2 hour later. He walked up town without a jacket, 26 degrees, he said he saw his only chance to excape. I was washing the floor, so I think he was trying to excape from the person washing the floor. I'll have to watch a little more closely know.

Take Care,
Gerry


Sun Jan 10, 2010 8:41 am
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Joined: Thu Sep 10, 2009 2:29 pm
Posts: 68
Location: Marco Island, FL
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Gerry, I'm not sure enough of his condition, but would it work to tell him that they have lots of things there that need fixing there?

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JoAnn

"It's not what you look at that matters, it's what you see.".....Thoreau


Sun Jan 10, 2010 9:44 pm
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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to B Myers, I am about in the same position as you except that I am the only wife, so do not have that extra problem of other children--Just his sisters---. our 2 daughters live out of state, visit regularly, and do understand.
GW has been going to day care for 2 years Tues & Thurs PM. Day care informed me that he has progressed beyond their ability to keep in Dec. so I have gone back to researching facilities-large, medium, and small. I have found 3 that might be possible-each is different size. I also realize that where I place him will need to be a good fit for me too- as I know I will be there a large part of every day. My support group members will confirm how I have stressed over the decision, waffling between home care or facility care. During the week between the holidays, he was very alert, no signs of aggression, and able to walk & exercise. Even his hallucinations were milder and less frequent. Because of this, I'm not convinced that the time is right for the facility yet. But I know that I need help !!! So I have hired the carehelper that has worked for us over a year , 3 mornings a week-- to live in. We do have a guest room, so she will have off time, but will be responsible for giving medications that I prepared, showering, dressing, assisting meals, exercising and bathroom trips (He hasn't gone by himself for several months). Yesterday was the first day of our new arrangement - now I will always have her when I have meetings and appointments or choir practice. I hope it will be a good long term fix, but if not, my research on facilities will have already been done and other decisions can be made.
I will also need to figure out ways to make sure he gets enough social stimulation, and professional evaluations. The day care did a good job of those, I'll miss that help.
By the way, each of the facilities has suggested that I bring GW to lunch or dinner. I think I will accept their offer, telling him that we will go have lunch with a friend. I should be able to assess his reactions.
I think we are all learning as we go--like we did with our children only in reverse.

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Di


Tue Jan 12, 2010 3:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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You're on the right track looking for a place with male residents. My husband, who is now home, has been in two dementia care units, one in AZ and one in WA, while I was selling our house and buying another. Both had mostly female residents. He would have preferred to have had some male social interaction, although one female resident thought he was her husband and they would wander the halls at night looking for an escape route. :shock: I wasn't bothered by it, but rather amused. She was a very nice lady--just confused.

LOTS of men pee on the bathroom floor--not just those with dementia!
:lol:

There are several web sites that can help you find a suitable place but do beware of the cost estimates. Some will add on as much as $1K a month just because a resident spills food on the floor! Some really luxurious places seem more interested in impressing potential customers [families] than in making their residents comfortable.


Tue Jan 12, 2010 4:31 pm
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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To Lewy Spouse,

Yes it would be a very good idea to have him go over with you for lunch. This way you can also see how the staff interacts with the residents. When you find some places you like, my advise would be to put your name on several of the waiting list. If your name comes up sooner than you need, you can refuse and still remain top on the list. And when the day does come that you have to place him, be very vigilant on your visits over to see him. Go different times of the day if you can, keep eyes open for not only his care but how others are cared for. I am fortunate that I was able to place John 5 miles from the house, so I pop over their all different times and make sure that I feed him if I'm there and check him over. I was also fortunate that I made friends with one of the other care givers who's mother is there, so we look out for each other's family member and report to each other. Am I happy where he is, its alright, its a small Nursing home, but like any nursing home, the staff needs direction at times and I think management is tired of me complaining if I see some thing that is a health issue to any of the residents, not just John, and that is what I tell them, I am concerned for all the people that do not have family visiting them. I've learned to pick my battles about what I want to complain about.

B


Wed Jan 13, 2010 4:38 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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I took Frank to the senior day program, this is the 5th day, Tues & Thus. He voiced all weekend that he was not going back. This morning after breakfast I remined him it was Tues. He continued to get cleaned up and dressed and did get in the car. He said he told me he doesn't want to go anymore and he was not getting out of the car. He did get out and I said I'd pick him up 1/2 hr early. He doesn't like going, wild stories of why he doesn't like it and I've used every arguement I can think of. I was very troubled when I left him this morning. He, like others, has a lot of fluctuation but is with it enough that he feels he doesn't belong at this group. It is a very sad situation watching all the men and women being escorted into the building. They "look" much older and disabled and Frank doesn't look like he belongs there. He has an appointment with his Pysciatrist on Monday and I suggested he talk to him about going, or not. Whenever Frank has been asked if he's dispressed, he says no, but I have noticed he is more withdrawn in the last couple weeks. I'm thinking maybe I should forget the senior program for now and hope he will be more open to it later. His daily life is a mix of hallucinations, drilling me of the people in those hallucination, thinking I'm not here, that I left one of the others to take care of him, draining for me but very sad for him. When this is over, my life will continue so it doesn't seem right to make him miserable twice a week for a little me time.

I would welcome your thoughts. :?

Take Care
Gerry


Tue Jan 19, 2010 11:38 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Gerry,
My two cents...keep him going to the senior day care! Even if it buys you a couple of hours of sanity a few days a week, it's worth it!
Robin


Tue Jan 19, 2010 10:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post go with your gut
Hi - I am a firm believer in going with my gut reaction and my intuition almost always turns out to be right. I'm glad your suspicions were confirmed before you moved him.
I had to lie to my dad at first about taking him to asst'd living, so I just told him about 5 min. before we got there that we were going there to get info. for the future. After an hour he turned to me and said he thought this would be a good place for him to be and asked me to write a deposit check. Granted, this was 3 weeks before his MAJOR downhill slide physically and mentally.
Different states, it seems, have different criteria for levels of nursing care. In MD where my dad is, Level 2 assisted living means they do things like take him to the bathroom, change his Depends, give him a shower, dress him, transfer him from chair to chair, bed to wheelchair, whatever. He cannot do much other than feed himself. He cannot even clean himself at all or put any of his clothes on or do buttons or anything.
Level 3 means he would be in bed all the time, need to be fed, turned, etc.
Do you know what levels of care there are in your state? Are there choices in other towns nearby? I'd visit as many as I could.
Don't count on anyone else doing the things you are doing - it will just get you frustrated and resentful. Take it from one who has "been there, done that". I often feel like my family members (except my husband) do very little compared to what I do, and I just have to try to let that go because my health is now compromised from dad's declined health and all the responsibilities I have taken on. Luckily my dad still has wonderful friends who have helped out a lot. Do you have friends who can help you, or caregivers who can come in and give you a break?


Tue Jan 19, 2010 11:01 pm
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Joined: Thu Sep 10, 2009 2:29 pm
Posts: 68
Location: Marco Island, FL
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As long as you can get him there, even if he doesn't "love it", it's worth it for you to have a little time on your own, and he will benefit from having his own experiences and a little time away from you.

Hopefully they will keep him busy and occupied. Good luck with this! I know it's not easy. I feel bad every Friday, when I take Bob, but I know he's safe and he's cared for. Mostly I work when he's there, but it's with a much freer mind.

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JoAnn

"It's not what you look at that matters, it's what you see.".....Thoreau


Wed Jan 20, 2010 7:39 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Thank you, My girls and friends agree and say, "he's got to go". I'm going to continue to try and make Frank think that he has to go Tues & Thurs. When he got up this morning, he asked if he had to go today? I just told him it was Tues & Thurs that he goes. Soooo, keeping my fingers crossed for tomorrow. I know when I'm giving him his shower or trying to figure out what he's talking about, if I know I'm going to have a break, I can muster up some more patience.

Thanks again, Gerry


Wed Jan 20, 2010 9:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post support for you
I just went to a support group this morning, and if there is one very common theme, particularly for women, it is that we give until we have nothing left.
We put ourselves at risk for others' sakes. If something happens to you, what will his care be like? You need the time to yourself, even if it is only a few hours. People with dementia are not logical, yet we all have these arguments in our heads (and sometimes with them) based on logic. It just makes our lives harder.
My own health has declined because I have been stuck in the anger, guilt, resentfulness stages and putting way too many people ahead of me. I have to listen to my own logical advice and keep reminding myself.
Please, please, please, take care of yourself so you have something left to give!


Wed Jan 20, 2010 9:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Well said, LTCVT! And don't ever expect any appreciation from your Lewy Love for what you do. I don't think they are capable of appreciation. So, not only do we knock ourselves out, we don't get any credit for it.

I want all of you on this forum to know that I appreciate what you do! In fact, only we can appreciate just how demanding this role is and can truly appreciate each others' efforts.


Wed Jan 20, 2010 10:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post You said it MM!
Thanks to all of you who take the time to read and respond. We are each others' keepers, even if we never meet in person. I feel like a huge burden has been lifted off me since I joined this on Sun. There is so much still to read and learn.
So many postings led me to do something today that I've been needing to do for a while re: my dad's meds. I now have the energy to start doing some things for him I just haven't had the ability to do the past couple of months.
Thank you all for the kind of support only a person who's done this can do. I hope everyone has a restful night, or at least a better one that usual! Lynn


Wed Jan 20, 2010 10:38 pm
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