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 How to make the best decision on placement. 
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
Post How to make the best decision on placement.
I know the time is getting closer where as I will have to make a decision on placement for John. I notice that he is having more bad days than good days and is getting back to hallucinating a little again. I have talked to his doctors and they feel that the medication he is on should stay the same, only because of his past experiencing with meds. He is on Aricept 10 mg Namanda 20mg and Seriquil 25mg a day. I notice that he is more confused and is even having problems with his dept perceiption again. I have talked to a brand new assisted living facility and they would put him on the wait list, but my concern is of course putting him there but I'm just afraid that they could boot him out if he gets aggressive. Not that he has gotten aggressive in the past but with this terrible disease and what I have read in past posts it is possible. I wonder will they be able to tolerate his bathroom peeing on the floor at times, the constant obsession with his depends, I am just torn on what is the right thing to do at this point, I feel so alone and lost with this. The place is a locked unit, but I told him that he has Lewy Bodies but I wonder if they really are aware what Lewy Bodies involves. Like I said my main concern is placing him and then having them boot him out. I know this is a decision I have to make soon, I was just hoping much later than sooner. Any enlighting from anyone would help as to placement in assisted living or nursing homes.
:cry:
B Myers


Thu May 28, 2009 3:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I think you have to deal with the symptoms you know about -- urinating on the bathroom floor. Don't deal with what might happen -- aggressive behavior -- as there are millions of things that might happen.

It's a good idea to be upfront about these symptoms with the facility. I would also suggest summarizing your meetings in writing with the care director.

Can you take a friend or family member along with you on these visits?


Thu May 28, 2009 4:22 pm
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Joined: Tue Oct 16, 2007 11:27 pm
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Robin,

I have expressed concern with the Director but I do not have anything in writing. I would hope that one of his children would go up with me to see the place, but its a drive for them and I have just been too disappointed by them throughout this whole illness. They have been avoiding us like the plague because they know that one of them should be taking their father for a weekend as was originally commited to when this all started.

B Myers


Thu May 28, 2009 4:57 pm
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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B Myers,

I agree with Robin...stay focused on the things you know of...take a witness along and get it in writing. Nothing worse than empty promises and I think that is one thing most of us worry about in this type of situation. I too wonder how they handle the peeing on the floor episodes.
I sympathize with you on having to make this decision .. but you need to do, what you need to do.
Kids! Lets send them all to an island where they give reality classes...and let them stay there till they "get it." They should only walk a mile on our shoes.
Good positive thoughts to you.

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Dianne C.


Thu May 28, 2009 7:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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I agree with the other posts, just stay focused on the now issues and bring them educational materials on LBD and then see what they have to say, my husband was so aggressive earlier on and the latter yrs her was very mild and easy to care for. Good Luck!

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Irene Selak


Fri May 29, 2009 5:07 pm
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Joined: Thu Jul 03, 2008 11:05 am
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Location: Raleigh, NC
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Obviously, eliminating in inappropriate places is never a pleasant issue to deal with, but if this is a dementia facility, folks will know it happens. A lot. I'm not sure the response in a straightforward assisted living unit.

Garnet


Fri May 29, 2009 6:04 pm
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I know I am getting closer to having to place John in a care facility. I have paperwork filled out for a VA home that is about 1 hour from me. The only reason I am leaning towards this place is because there are a lot of men and they would have the service in common and it seems more active there. There is another place out by me that is an Assisted Living, locked unit, but I am just not sure about it, its beautifully decorated and all but that means nothing to a man, I just don't think it would be active enough for him. I can really see a deterioation in him over the past week, talking nonsence, real problem with using fork and spoon, problem dressing, it is just getting to hard for me to do alone anymore. My question to all is how do you get him to go into a facility, he is not one that is going to walk through the doors willingly. Do I enlist help from his Doctors, but bear in mind his doctors are VA doctors. I feel defeated to the fact that I just can't handle it anymore I have to watch him like a hawk because right now he is a danger to himself with walking and mulling around. :cry: :cry:

B Myers


Sat Jun 13, 2009 9:40 am
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Joined: Thu Jul 03, 2008 11:05 am
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Location: Raleigh, NC
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B,

There's no winning with LBD, which means there's also no defeat. All we can do is cope, and that at some point requires assistance beyond ourselves and our families. That's all you're doing, getting the help you and your husband require. As sad as it is, you should feel good that you recognize the problems and are taking the necessary steps to address them.

I don't think there's any foolproof way to get someone to walk into a facility. My mother to "try out" a place where she could get more help and maybe get better. She was at a stage, though, that she didn't recognize she was in my home -- or who I was, much of the time -- and the agreement meant nothing once she was actually in place. You may well need help to get him in -- doctors, friends, families -- to keep him distracted if nothing else. Of you do choose the VA facility, perhaps that veterans connection will mean something to him.

It won't be easy, but trust yourself. You know if it's the right decision, no matter how difficult.

Garnet


Sat Jun 13, 2009 10:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Garnet -
Yours is one of my favorite posts of all time!


B Myers -
Generally speaking I think you should try to find a facility as close to your home as possible but the VA facility does sound great from that male point of view. (How much will your husband be interacting with others?) Sounds like you've got two good options. I think a family meeting about why the move is necessary would work, or, if you can't get family (or friends or clergy) to come together for such a discussion, then having the MD explain it to your husband would work.
Robin


Sat Jun 13, 2009 11:43 am
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The only reason I lean toward the VA facility is because of the male population and the fact that he loves the fact that his son is a Major in the marines. Yes he always enjoyed being social and interacting with people he still does, but you know half the time they are talking alot of it doesn't make sense.
I just got a call from the Locked Assisted Living Facility I also have him on the list, she of course said the final decision would be up to their nursing head. I just don't feel good about placing him there, because of the pee problem. When discussing this with her she said yes it could cause them to after a while say he wasn't acceptable for the facility, I guess I was lucky to get that out of her. The last thing in the world I want to do is place him and then get him booted out. I also put him on a list of a locked nursing home unit closer to me, he would be next in line, but I feel bad about putting him there, only because 3 years ago I had my Dad there and that is where he died. I just sent an e-mail to all of his kids, telling them that I cannot do it anymore alone, and I'm upset that when this all started with their father coming back home, they all promised that they would give me a break, and I know they have lives of their own and kids, but he is their father and the last I heard they only had one father. I told them I was just tired of having to beg for them to take him for a weekend, and now I don't know if he would even be safe going with them. :cry:

B Myers


Sat Jun 13, 2009 12:36 pm
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Location: SF Bay Area (Northern CA)
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B Myers -
I know we've danced around this topic before. It seems you have no respect for your husband's children, and you probably made that clear in your email to them. I think you should simply inform them after you've moved your husband, let them know what approximately your visiting schedule will be, and suggest that they might visit their father at a time when you won't be there.
Robin


Sat Jun 13, 2009 12:44 pm
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I don't want to say I have no respect for his kids I am just disappointed in them. In my e-mails to them I am not nasty, I just tell them I need their help which was promised 18 months ago. Believe me when I say I realize they have a life, kids etc. but I wanted them to spend the time with their Dad when he was in better shape. I would give my right arm to spend one more day with my Dad. As far as not running into them wherever I place him, I don't think I have to worry about that, they are not going to beat down the doors to where he is. I just hate what I am turning into over this. :cry:

B Myers


Sat Jun 13, 2009 12:56 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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B Meyers,
I can't chime in much about his children, I didn't deal with that but I do want to comment about the possible placement, when the Assisted Living called you and mentioned that the peeing could be a problem that to me is a red flag, but again it is only assisted. Follow your instincts!

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Irene Selak


Sat Jun 13, 2009 8:23 pm
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Yes that did send up a red flag for me after talking with the Assisted Living director today. I loved the place but I just had a gut feeling about it being a problem there, so that confirmed it to me loud and clear. I will just look in an other direction. Hopefully the Solddiers home will consider placing him.
:(
B Myers


Sat Jun 13, 2009 8:31 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Frank and I went to the Senior Program, (day care), today to fill out paper work, about an hour interview. We asked him if he had any questions and he no, but did say, "I'm not coming". We tentatively signed up for Tues and Thurs starting the first of the year. The Dr said just take him and tell him you have a couple errands and will be back. He's very seldom with it, but with that he's very aware. I'm going to try to talk him into trying it, he usually dislikes me and I suggested it would give him a break from me but even that didn't convince him. We are getting to the point that I can't get much done in the house or in the yard because he'll get into trouble. Most say they do seem to adjust and like it after away, we'll see.

Take Care,
Gerry


Mon Dec 21, 2009 7:45 pm
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