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 "I Want to Go Home" 
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Joined: Fri May 22, 2009 1:04 pm
Posts: 46
Location: Chapel Hill, NC
Post "I Want to Go Home"
This is my husband's sundowner theme many days. Fortunately (though I hate to put it that way), he is so completely disabled (his initial diagnosis was "possible MSA") that he can't wander. If he were able-bodied, he'd be unrestrainable and possibly violent at times.

The other night was the worst episode we'd had. He seems to be living in a particular era of the past when it happens (I think of his brain as a computer running cached pages because it is no longer connected and online), and the craziness seems to be triggered by reality's and my "refusal" to fall in with what his brain is telling him. He becomes fidgety and agitated, he wants me to wheel him outside repeatedly, once outside he starts shouting for people, and he cannot believe that we're not in New York (where he lived for 50 years, and where we could no longer stay because he could no longer manage the stairs in our Greenwich Village skylight walk-up).

I thought the "I want to go home" was due to the fact that we actually did leave the place he regarded his home, plus, he was taken from his first home in Eastern Europe by the Red Army at age 16, was a slave laborer in the Soviet Union for two years, escaped, and chose to go to the west instead of to his parents in the Soviet shadow. So he's particularly unsure where "home" is. But reading this forum has made me realize that he might be saying the same thing even if he had lived in the same home all his life. What he really wants to go "home" to is a time when he was himself and oriented.

The first symptoms of his illness began a decade ago. I can't even imagine what lies ahead. He's 81, I'm 63 and I sometimes wonder if he might not outlive me.


Fri Jul 03, 2009 3:18 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother is daily into the I want to go home. I keep telling her not to pack and reassure her we're here together. She also has the Parkinsons so she can't get far on her own. It is very frustrating to deal with this everyday. It does seem to help to get her into the car and drive around. There are days I think she could outlive me
Sharon

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syt


Fri Jul 03, 2009 9:42 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Yes I always found a short drive int he car was always helpful! Glad it works for you too!

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Irene Selak


Fri Jul 03, 2009 10:01 am
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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My mother asked me a couple months ago to just drive her around the block. I complied, and it did wonders for her spirits.

Although my mother is in assisted living, I hire caregivers to give her supplemental experiences such as outings.

Still she is bored and frustrated.

She complains that she has been sitting around for days, and wants to 'work' or 'go to work'.

She also wants to get up out of her chair and walk, although she can barely take a few steps with assistance. While she was home for Christmas I heard a thud and ran to her to find that she had tried to get up. She assured me that she was fine. I don't think that she remembers, sometimes, that she can't walk.


Mon Dec 28, 2009 2:49 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
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My wife has been saying that she wants to go home as well. I explain that this is our home but she insists that we are in someone else's home and we need to pack her bags and go home. Thin morning she told me at 0130 she wanted to get dressed. So I did get her dressed. Then around 0330 she wanted to go to Krispy Kreme. (She hates doughnuts) So, I got her into the car and got gas, money out of the ATM and we started driving. She told me she had a stomach ache and wanted to know where we were going. When I told her she wanted to come home. So we came home. Seems to be a little better. Maybe the rides help.


Sat Mar 27, 2010 3:55 pm
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Joined: Sun Dec 20, 2009 7:43 pm
Posts: 54
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What surprises me are the suddenness of urges to go somewhere...and then the suddenness of the fatigue that makes the outing impossible.

One minute she'll be adamant that she wants go go shopping... the next she's completely conked out. She has no idea that she doesn't have the stamina to go anywhere after dinner... getting her jammies on and going to bed is about it for her. Still sometimes she'll ask about going somewhere.

I know she has about 15 more minutes of alert time left so I shift the conversation to something else...


Sat Mar 27, 2010 8:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
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Same here. Every afternoon and evening, I don't have a car. I need a ride home. It doesn't seem to help to explain to him that he's already home. :(


Sat Mar 27, 2010 8:41 pm
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Joined: Tue Dec 01, 2009 5:04 am
Posts: 14
Location: New Zealand
Post I want to go home....
Scientist and Mockturtle........
Yet another similarity amongst the LB's. My husband now doesn't drive but when the frustrations and boredom get too much a drive seems to help, at least briefly. Difficult though to squeeze in a quick trip to the supermarket before its "I'm so tired, when are we going home??" I do not have any other outside help and so find i can leave him at home for short periods only. If he knows I am going to be away for some hours and friends are coming he gets very anxious and tries to be so unwell I feel I'm being put on a real guilt trip! Why are they so manipulative? Is this part of the journey too? Then the lack of ability to do the smallest task, when previously he was very skilled, adds to the frustration for a perfectionist and sure makes my life tricky........However there is more to come I know...........


Fri Apr 16, 2010 5:06 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Barb,
I don't think it is true manipulation I think it is more that he can't see the needs for other things because in his mind his needs come first, they don't have a lot of thought process about how the food gets to the house or anything along thoses lines, one of the things I always did when the moods became dark in the course of a day as my husband couldn't walk much I would pile him in the car and take him to a fast food place and do the drive thru and get a ice cream come or a soda , it always seemed to help some!

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Irene Selak


Fri Apr 16, 2010 10:34 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Rides
My wife wants to go for a ride whenever she seems stressed. Then she wants me to drop her off somewhere but she never knows where. Lately, she wants to see all her old friends and family in Northern Michigan. But, the doctor has said no travel. She may have a ever lasting hallucination. Shame because I would like to take her. We have seen very little of any of her family since her Dad passed away in 2004.


Mon May 17, 2010 2:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
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Mac: I'm not sure why your doctor advised against travel. I drove my husband [and the dog] from Yuma, AZ to WA in a motorhome a year ago. I would not have taken him in the car, but that's because he's not comfortable and he also freaks out when he thinks I'm driving too fast. He sat comfortably belted into the dining area swivel seat. I stopped frequently and pulled out for the night by two or three in the afternoon. People had urged me to fly him home instead but I knew that would be a big mistake [picture the headlines: plane forced to make emergency landing due to unruly passenger]. He was none the worse for the trip.

My worst fears didn't happen:
1. That he would try to get out while we were on the freeway.
2. That he wouldn't sleep, and therefore I couldn't sleep. [He woke at 4:00 AM but that was OK].

I think you should taker her if she wants to go and if she is able to safely ride in the car. Some probably could even fly without problems. There isn't much left for her, is there? Life is short and getting shorter all the time.


Mon May 17, 2010 3:06 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Thanks Mockturtle
I hate to admit hat the time may be short but I certainly do see changes that I don't like.Her mind seems to be getting worse. She knows it and cries at least once a day. That may be an idea, rent a RV and go that way. She hates RV's but is great to ride with. We have ridden 14 hours on trips to Florida. Which was her idea to keep going. So I will make every effort to take her to see what she wants. Thanks


Mon May 17, 2010 3:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
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I was wondering, too, why the dr. said not to travel. If she is mobile and can get in and out of an RV, renting one and taking a road trip would probably be a great way to go. I'd thought about moving my dad up here last fall in our RV because they are so comfortable to travel in. (I missed the opportunity to do so because he is too disabled now for us to move him.) I say "go for it" and have a good time! Lynn


Mon May 17, 2010 9:35 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Thanks everyone
Well, I have checked into the possibility of a RV. She hates RV's but thinks it would be a good idea as well. Now my sister and Niece have volunteered to go with me and even help with driving. So, thanks everyone. I will definitely try this approach.


Tue May 18, 2010 6:31 am
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: "I Want to Go Home"
Whenever I have visit dad lately in the nursing home he always says that when he "gets better and if I keep improving then I should be able to go home" I have been pretty straight with him saying that mum can't cope with him at home, and even though at the moment he seems to be going really well on his current medication his condition will go in peaks and valleys and at the moment we are riding a peak. If he would to go home and suffer a downtown then we would not be able to get him such a nice place where people can care for him and his needs.
I am struggling with this myself as I read about all the great carers taking care of their loved ones in their own homes yet dad (at the moment) seems to be operating well. His speech is good and even though he always has a new dream to tell me about when I visit he is happy to tell me about it and even today he talked for about an hour in the "mood room" at the nursing home and he said it did make him feel more relaxed and calm. (We asked about this room nobody seems to utilise it but I remembered my neighbour telling me how benificial they can be so today we sat in there and pulled the curtains and chatted) He said to me as I said I was heading off "Well we covered a lot of things today didn't we? And I said yes we did and you should sit in here anytime you want for quietness when you need it> I hope he does. Getting back to the "going home" I was hesitant for my sister to take dad for a drive when he was only in his second week at the home and pressed the matter with mum but now I feel he may be able to cope with a brief 1/2 hour drive. I feel if I ask mum about this I am making a double standard for me and my sister but dad has truly settled I feel. ( I see him three times a week most weeks). Do I take the plunge or not I don't want to be the cause of any degression that it may cause. Am I being over cautious.


Tue Oct 26, 2010 12:54 am
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