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 "I Want to Go Home" 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "I Want to Go Home"
I don't want to bring bad tidings at New Years, Jeanne, but that behavior will probably return again and again.... in spades. When Dale was diagnosed in 2009, I was blissfully convinced we had this thing knocked. We had the proper medicine, etc. Dale and I traveled, etc.

Now, he is again back to square one. 'Going home' and 'going upstairs' are a regular part of his conversation. He also thinks I am at least two people. We are never at home and we have guests at the dinner table every night. That behavior plus the need to wear a diaper, have a wheelchair, and cope with falling out of bed (as we did this morning) are all a part of Lewy. Welcome to my world! I hope it doesn't happen for a long time but it will. I'm sending ((((hugs)))))

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


Fri Dec 31, 2010 9:30 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: "I Want to Go Home"
This was a constant plea of my mother's when we were in rehab for 4 months. We promised her that we would take her home as soon as the staff said she was ready. Well, she's been home now for 2 months and still daily (starting in the afternoon) wants us to take her home. In the beginning we determined that she was speaking of her childhood home just a few blocks away. She did not believe that it belongs to someone else now and thinks her mother who has been dead for 45 years is waiting for her and worrying about her.

She hasn't mentioned that home in a while, and says that the home she is in now (for the last 55 years) is most certainly not her "home." It looks like her home, has her furniture and pictures and clothes, but "it is not my home!" Sometimes she is on a train, trying to find the conductor to let her off, for a week it was my dad's boat, during the World Series we were in a stadium, if she sees a church service she is in a church and we have to get out before the people arrive and see her in a bed. For a week, she was furious with us because we left her on a street corner in her gerry chair and everyone in town saw her there. Since starting seroquel and ativan she is not as agitated and angry, but she is relentless in her insistence that she wants to go home!!

Good luck as you navigate the rough waters of LBD; maybe you'll see my mom in her boat!

Debbie :mrgreen:

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Fri Dec 31, 2010 10:05 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: "I Want to Go Home"
for me and hubby ,when he has has his delusions and he want to go home, its so sad.. i try and convince him we are at home and then if i do convince him, he wonders why all these folks are i the room with us.. since im in my jammies, i always look to make sure, then say we are alone, its ok.. but somehow he still doesnt believe me... it must be scary being them..

i hate when he looks at me with distrust.. i tell him its ok, please just trust me. i tell him the day after it happens ,i tell him when hes good and thinking clearly.. but it doesnt seem to help much when we are in a hallucination.. he says ok.. but i can see that look of" why are you doing this to me, in his eyes" and it breaks my heart!!
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Fri Dec 31, 2010 10:28 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "I Want to Go Home"
Yes, Lynn, we have been very, very lucky (except in getting the dreaded disease in the first place.) The "going home" episode was 7 years ago and it hasn't come back. I know that it could, and worse, but I'm enjoying this while it lasts.

Leone, thanks for the hugs. We seem to have done this in reverse. Coy started out with hallucinations, paranoia, no short term memory, spatial orientation so bad he couldn't figure out how to get into bed and got lost on his way to the bathroom, constant falling down, and inability to sleep for more than an hour or so at a time. How much worse could it get? But it got better. I know that it won't necessarily stay better. On the other hand, he has already outlived the life expectancy in his family, and maybe he'll get his wish -- to die like his father and two brothers, quickly of a heart attack and not slowly of dementia. Whatever is ahead, I'm just trying to make the most of what we have now.

Debbie, if I see your mom I'll be sure to wave. :P

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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 10:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: "I Want to Go Home"
It's interesting, isn't it, how many of our LOs want to go home, and how many of them think they are in something other than their bed or chair. My dad sometimes thought he was in his car with a flat tire and that's why he was leaning sideways out of his chair and couldn't get upright. He kept telling his CGs that if they'd just change the tire he'd be fine! Now I can laugh about it but I cried when they'd call me and tell me things like this at the time. Trying to deal with their delusions and hallucinations is very, very hard. If I'd known anything about this at the time from others perhaps I would have not gotten so sad and distressed about it. Those of you in earlier stages are very lucky to have gotten on this forum now. It really would have been beneficial to me a while ago. Glad there is such a wonderful community of support here. Feels like a home away from home! Happy New Year to all you CGs out there! 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.


Fri Dec 31, 2010 10:45 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "I Want to Go Home"
JeanneG wrote:
We seem to have done this in reverse. Coy started out with hallucinations, paranoia, no short term memory, spatial orientation so bad he couldn't figure out how to get into bed and got lost on his way to the bathroom, constant falling down, and inability to sleep for more than an hour or so at a time. How much worse could it get? :P

No, I think what you describe is typical Lewy. Dale began 2009 with the whole list of behaviors you mentioned. However, by the end of 2009, we took a trip to Italy. Early this year, we were with a tour in the Canadian Maritimes. We went to California twice and to Boston as well.

After his initial deulusional behavior and hallucinations, Dale went for a long time with minimal symptoms. It has only been in the last 5-6 weeks that all that disturbing behavior has returned. The only reason he isn't falling down is that I am with him constantly. I just hired a caregiver. Sadly, it's not only the end of his mobility, but of the campanionship which we enjoyed.

Please enjoy this period to the fullest! We did. I have no regrets.

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


Fri Dec 31, 2010 11:11 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: "I Want to Go Home"
Leonne and Jeanne,
I read your posts and said to myself "That is exactly what happened to mom." My mom got lost going to the bathroom at my brother's and it was less than 4 feet from door to door. This past week I kept thinking I had to go to the neurologist and have another conversation. I'll try Leone to enjoy these moments to the fullest. Thanks and here's to the new year!

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Katie (36) daughter of Marcia (70)


Fri Dec 31, 2010 11:46 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"
We have had all it, and visiting the formun I know this is "normal" :twisted:

Every so often I read of a CG saying that her husband is a sweet, gentle man, I'd like that. Yesterday Frank was so bad, at dinner I asked if he knew who I was, he said no, so I explained I was his wife, he said I wasn't the person he married, she was nice. I told him the man I married was kind, caring and gentle, so neither was he the man I married because he was mean and nasty. I seldom give negative comments but this has been a very LOOOOng month. After that comment he refused to eat dinner, our daugher was here and can usually humor him into doing anything, but he was not going to eat. Although he did have enough oatmeal cookies to fill his tummy.

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


Sat Jan 01, 2011 8:25 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: "I Want to Go Home"
I'm so sorry Gerry and everyone dealing with this. Can you get out some every day so you can get away from the stress of cg'ing and the negativity? My dad could get very mean and nasty too, but at least I could leave his room and walk away for a little bit, or leave the ALF and go back the next day. I don't know how you live with this 24/7. You really need to take care of you! 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.


Sat Jan 01, 2011 11:16 am
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: "I Want to Go Home"
My mother can also be quite mean and nasty, definitely uncharacteristically. She has always been feisty, but not hateful. It's like a light switch is flipped and you can see it in her eyes. She turns on a dime and glares with such hate that it is hard not to react. My brother handles it the least because she usually unleashes on him. He looks like my dad and she thinks that my dad is having an affair and she is going to get her gold pistol from the bedroom and shoot him!!We are so lucky that the 3 children share the caregiving, so we can escape for a few days at a time. However, when she is in one of those extreme episodes and it lasts all day and sometimes all night, it is hard to be there 24/7 even for a few days at a time. My hat and heart is goes out to all cgs who are in this struggle 24/7-7. God bless you all!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Sat Jan 01, 2011 1:49 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: "I Want to Go Home"
Jeanne,

When my mother was first admitted to the SNF in February, she wanted to go home all the time. It was so hard to watch. Then I read somewhere (probably on this forum) that wanting to "go home" can be not the literal wish to go home, but a wish to feel safe and comfortable (i.e. "at home") where one is. I believe that was the case with my mother. It took several months, but the homesickness passed as her adjustment to the SNF improved. I suppose it could return but it has been gone for six months now. You never know how Lewy is going to affect someone.

I am glad you found the forum. It can be a tremendous help and comfort!

Happy New Year to all!

Julianne


Sat Jan 01, 2011 2:05 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "I Want to Go Home"
I don't think the wish "to go home" would seem so surprising from someone who was not at home. When I've been hospitalized I've wanted to go home, even though I also knew I was at the best place for me at the time. What I find very interesting is that so many LDB sufferers want to go home when they are, in fact, in their homes. Or that they want to go upstairs, in houses without upper stories.

I wonder if this is common in other forms of dementia? Does anyone know?

It fascinates me that RBD sleepers all have similar dreams. I think the mysteries of the mind are wonderous -- I just wish I didn't have to observe them so up close and personal. :lol:

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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


Sat Jan 01, 2011 11:18 pm
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Joined: Mon Sep 06, 2010 9:28 am
Posts: 5
Post Re: "I Want to Go Home"
I have been away from the forums and internet discussions for about 9 months. My husband was doing SO well, and everything was going great. His medications were working, he was sleeping, and I was 'enjoying' things being somewhat "normal"....at least comfortable, with few concessions having to be made for his LBDA.
Right before Christmas he started having a flare up of his COPD, and ended up in the ER needing steroid IV meds. He is still taking the steroids, and all "hell" has broke loose.
He is not sleeping, and is SO confused. He keeps insisting that this is not our house, I am not his wife, and he keeps trying to reach me on the phone to come get him. When that doesn't work out, he insists on getting in the car and driving to "his house". We are going in circles and he is devistated that he thinks I have "left him", and he can't find his house. He is so lost.
We do drive around when he insists....mostly in the middle of the night.
Today the whole thing just got so overwhelming I burst into tears and had my own melt down. I feel so bad that he feels lost and abandoned.
I would relish any words of encouragement.
THANKS


Sun Jan 09, 2011 11:18 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: "I Want to Go Home"
Please know that there are many of us who are on your side. These downturns can happen extremely fast. My mother in law used to be almost normal, then get dehydrated or a UTI and become agitated, incoherent and delusional. Then after a few weeks she would level out to almost "normal." Hang in there and be strong. Now she is just a shell of her former self and we can't see the ups and downs as clearly. It's all pretty much downs.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Jan 09, 2011 11:58 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "I Want to Go Home"
Ah, that is so sad, shalomichs. I am glad that you had a good 9 months.

Has the doctor who is managing his LBD treatment re-evaluated him since the COPD flare up? Is he back/still on the same medications?

When my husband returned home after a hosptial stay various health care providers (ot, pt, nurse, etc.) visited him at home for a few weeks. He was weak, confused, and functioning at a much lower level than before the hospitilization. One of the visiting professionals shook her head wisely and said that I should expect this as the new baseline -- dementia patients rarely bounced back from these experiences. When Coy recovered from his health problem and recovered from being in the hospital and regained some strength, he also returned to his former higher-functioning baseline. This has happened more than once. Of course, the visiting therapists aren't seeing him when he is better so they continue in their belief that dementia patients don't recover from setbacks.

Whenever Coy suffers any physical problem, Lewy seems to take advantage of his vulnerability. :x The decline in cognitive ability often is the first sign of the other problem. He had been having bad days last week and I began being alert to possible problems. Sore throat? Ear ache? UTI? What's going on? It turned out to be constipation. That taken care of, he is already improving cognitively.

LBD is a progressive disease. It may be that the COPD flare up set off a new round of progression. But it is also possible that it is temporary, and that when he is fully recovered from that problem the worst lbd symptoms will subside, too. I don't want to hold out false hope, and you are entitled to a melt down or two. Try to hang in there, and hope for improvement as his other condition improves. Be sure to stay in touch with his LBD doctor.

Hugs to you!

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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


Mon Jan 10, 2011 12:00 am
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