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 "I Want to Go Home" 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: "I Want to Go Home"
Pat, I am so sorry. You give your all and it is not enough. What did you do wrong? NOTHING! We've all been there in one form or another, different script but same none the less. Thankful someone came. You are loved by us who you do not even know.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Oct 28, 2010 8:41 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: "I Want to Go Home"
Pat, I'm sure Derek's comment upset you, but I did get a good laugh. Last night when I got tired of calling Frank for supper I went in to the den and said supper was ready, he said "eat it yourself". I wrapped it and it was tonights supper. My friend, 89 yrs old, asked if I get hurt when he's gets vocal and mean. I don't, I get frustrated and feel sad for him, I find myself feeling more like a caregiver than a wife. I hope I can keep him home but physically he's very healthy so as he declines over the years I will be getting older so I guess we'll cross that bridge when we get to it. We've also had the police here but they are very good, it was obvious that Frank was mentally challenged.

Hope you have a quiet evening, tomorrow is another day. :-)

Take Care, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Oct 28, 2010 8:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "I Want to Go Home"
Thank you, Dorthea and Gerry! Your support means a lot to me. :-)

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Oct 28, 2010 9:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: "I Want to Go Home"
Pat - Sorry for today's issue - you have so much to deal with! I hope Derek is in the house and goes to bed early so you can have a peaceful evening. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Oct 28, 2010 9:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: "I Want to Go Home"
Pat,
Sounds if you have had a day from Hell, I am sorry and I guess the best we can hope for is he sleeps well tonight and you get some rest and start all over again tomorrow on a better note!

I remember those kind of days all to well and they are so hard and draining!

Your doing everything you can and you know it is the illness that causes him to behave like this !

Take care !

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Irene Selak


Thu Oct 28, 2010 9:55 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: "I Want to Go Home"
Pat, I hope you weren't offended with my finding a bit of humor with Derek's comment. I think a few of us live this life with our LO's seldom showing appreciation for all we do for them. Frank was always kind and mild mannered, Lewy has changed that. On occasions he will make a fist, put his teeth on my arm, and frequently call me names that he never used in his good days. He always thinks I'm lying and playing mind games with him, but that's our life and I deal with "whatever", as it comes along. I do appreciate and understand what you are going through. My sister is my sounding board, things that would or should upset me don't, most of the time I can find a bit of humor in our daily life, and hopefully that will help me to continue with this thankless journey.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Oct 29, 2010 8:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "I Want to Go Home"
Gerry, I also try to find humor and often do. Yesterday he had been driving me crazy with his accusations and hostility and, being unable to scream because of the neighbors, I started singing opera. In retrospect, I thought perhaps it was my singing that pushed him over the edge. :mrgreen:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Oct 29, 2010 9:38 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: "I Want to Go Home"
So, Pat, how did it go? Sometimes I wonder about these things. If they are aware enough to moderate their behaviors for the police, then they have some level of control. It's like Del trying to go through the front door at night with no clothes on. As soon as I alarmed the doors, he never tried that again. And they say they cannot learn. ???

But I am concerned that you are okay. You didn't post after that message. Let us know you are okay.

Nan


Fri Oct 29, 2010 10:32 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: "I Want to Go Home"
Well..geeze...I clicked on "next unread message" and came to your post which was the last one on the page. I scrolled to the bottom and saw there were no further posts on the page (that page) and didn't look to see if it was continued.

Now I see all the posts after...Boy there's egg on my face.

Nan


Fri Oct 29, 2010 10:38 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: "I Want to Go Home"
[quote="nandel8"] And they say they cannot learn. ???

Nan,
I believe they can learn by some experiences, I had an ugy experience with my husband just as Pat did yesterday and by my actions , my husband never did it again! I did put the fear in him enough that when other issues came up I gave him a gentle reminder him and he would back off!

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Irene Selak


Fri Oct 29, 2010 10:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "I Want to Go Home"
We're OK. I just gave him his shower and got him dressed without incident. He's grouchy, but he's almost always grouchy. He was kind of a grouch even before Lewy. Of course, he can still be quite charming when he chooses. So, yes, they still have some level of control.

Here's an interesting observation: When he was in the dementia care facility summer 2009, he was sometimes angry and hostile toward his caregivers but was very nice to me when I visited daily. In fact, he lit up like a Christmas tree when I arrived! He even knew who I was!! But after a couple of hours he started in on me again and I would sometimes just have to leave. I guess his 'nice' is very time-limited. Or familiarity breeds contempt.

Thanks, all for your sweet concern. I feel the same care and concern for all of you. Gosh, I wish we could all get together! In fact, we should get all our Lewy Loves in one room together and we could meet in another. I wonder what would happen? :mrgreen:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Oct 29, 2010 10:54 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: "I Want to Go Home"
Pat, I can't tell you how often I have thought exactly that. Wouldn't it be wonderful to have some kind of a regional thing every few months where we would have a morning or afternoon to get together where our LO's were entertained or supervised in an activity program in another room. Maybe a speaker and lots of just social time for us. What a wonderfulsuport that would be.

We can dream.

Nan


Fri Oct 29, 2010 11:00 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "I Want to Go Home" Gerry
Gerry, you wrote, "He always thinks I'm lying and playing mind games with him, but that's our life and I deal with "whatever", as it comes along. ... My sister is my sounding board.... "

Your comment could have been made by me. I also use my sister as a 'sounding board.' This morning, Dale sat for about two hours with a bank statement. He wondered where the money came from and why the church (especially a particular lawyer on the board) thinks it belongs to them. We have to prove it is our money by sending a copy of the bank statement to one of the other members of the board.

Who knew?

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Oct 29, 2010 11:17 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "I Want to Go Home"
I realize that this is an old thread, but I'm new here and I find it fascinating. At first my husband frequently wanted to "go home." And another theme was to "go upstairs." He'd wander around the house looking for the staircase. (We don't have a second story.) Often he thought we were at a train station, or sometimes a hospital, or a school. One day he was on his hands and knees removing a new cord with a switch I got to make it easier for him to turn off his bedside lamp. "Honey," I said, "I thought you really liked that new switch. Why are you taking it off?" "Well," he replied reasonably, "you bought it, didn't you?" "Yes." "If we own it I really don't want to leave it in this motel when we leave." Hmmm ... that is a sensible action, given his premise of where he was! :P I gave up trying to convince him we were home and instead tried (not always successfully) to distract him. "It's not time for us to leave yet. Let's see if there are any cookies in the cupboard and have a cup of tea." I didn't realize how common this desire to "go home" is.

It didn't get worse. He is now completely oriented to time and place. I think that this "go home" phase lasted a month or so.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Dec 31, 2010 7:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: "I Want to Go Home"
You have been lucky, so far Jeanne, if it only lasted a month. My dad wanted to go home the entire 18 mo. he was in the hospital, rehab and ALF. Every time I saw him he asked me to take him home, and home sometimes varied as to where exactly it was. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Dec 31, 2010 9:28 pm
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