Old 02-05-2011, 03:32 PM #1 (permalink)
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Default Losing Interest in Outside World

My pals has not yet started losing interest in the outside world. She still looks forward to getting out of the house. Although she does enjoy being inside way more than usual. She still loves watching her shows on TV and always has something to say about politics or some news story.

However, through a private network of caregivers I've met, often their patients could care less. They've lost interest in what's going on outside of their immediate family. And they often lose interest in going outside at all first. This makes me quite sad.

Any of you guys really care less? If you haven't been outside for years, why?

I am real curious about how caregivers of terminally ill patients and the patients themselves feel about these things.
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Old 02-05-2011, 03:40 PM #2 (permalink)
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Default Re: Losing Interest in Outside World

I am just starting to stay in more and it just wares me out going places so I can see how this slowly happens. I can still drive but getting down stairs and into the car is dangerous and hard so I have not been driving much at all. I used to go all the time but home is becomming much more comfortable.
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Old 02-05-2011, 03:57 PM #3 (permalink)
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Default Re: Losing Interest in Outside World

I miss going out.. My biggest hurdle is what if I have to go to the bathroom? Can I do it? I am going to learn how to use a transfer board for toilets. my back and hands are still strong so I can use it. Once that goes it will be more difficult to go out without having a cathader installed. I am also waiting for my power chair and van. One thing I've found is that our local city has buses that pick up people in wheelchairs and take them anywhere you want to go for a small price. I will start using that to go shopping.
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Old 02-05-2011, 07:37 PM #4 (permalink)
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Default Re: Losing Interest in Outside World

I am one who just would like to stay at home. It's been gradual; I find fatigue to be so powerful, the price to pay for going out is huge. Being alone has never been a problem, but when I was healthy, a big snow could keep me in for about three days, after which I felt stuck and wanted out. I loved being outside here, and all outside mowing and gardens were my projects.

I don't watch television at all--not saying I never will, but it would be an act of desperation.

Aside from the fatigue factor, I cannot use anything to transfer, since I need the hoyer lift at home. And, finally, my chair cannot handle our trails and paths, which go through woods and over roots on mostly sandy soil. Staying inside rather than zipping around between houses or back to visit the chickens has been very hard, but briefly so, as I'm finally learning to let go of what I can't do. Until two years ago I could get to the garden and chickens in a golf cart. Not being able to stand to transfer is probably what put an end to going outside in my particular case. However, others find going out in their yards very doable in their chairs.

Finally, I get lots of visitors. As much as I'm fine being alone, conversation with close friends is always delightful. Very tiring, and it needs to be spaced out, but delightful.
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Old 02-05-2011, 08:37 PM #5 (permalink)
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Default Re: Losing Interest in Outside World

I can still get out, and do when the reward is worth the effort. Shopping or eating out are not worth the effort. My grandkids live from two hours to three hours away. Daytrips to see them are long days. Overnights are pretty much not doable because of sleeping difficulty and bathroom access.

The places I really want to go won't happen...another ocean cruise...another camping trip to the Canadian-Minnesota border.

I don't know how others feel, but I don't particularly enjoy being in a wheelchair in public.

I like being on my back deck and around the campfire in the back yard. The red pines surrounding the lot remind me of northern Minnesota where I've had so many wonderful experiences. The back yard is a poor substitute, but worth the effort.
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Old 02-05-2011, 09:12 PM #6 (permalink)
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Default Re: Losing Interest in Outside World

I haven't been off of our acreage since November and although I would like to go out my serious throat clearing problems keep me home. I have a portable suction but need water to loosen up the goo before I can suction so its just too much work and worry. And then there is the getting dressed for outside in a Canadian winter...

I have always been a homebody so I don't mind and I always keep up on the news so I do keep up with what's going on, just too much bother to go out unless I have to.
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Old 02-05-2011, 10:18 PM #7 (permalink)
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Default Re: Losing Interest in Outside World

For those of you that love to go outside. This will inspire you... Augie keeps on going... he has given me hope and inspiration that anything is possible even with ALS.

Augie Nieto: Halfway to a Hundred
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Old 02-05-2011, 10:35 PM #8 (permalink)
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Default Re: Losing Interest in Outside World

I still like to get out and enjoy the sunshine. Go to Disneyland or the beach or just get out into the neighborhood. I use the powerchair now everywhere I go.

At first, I decided I didn't care about the news or politics or what was going on in the world. Not my problem and it will be for somebody else and for some other generation to deal with all the problems and issues. Now, while the troubles don't bother me so much (still somebody else's mess to clean up) I find it almost entertaining to listen to the troubles of the world. The troubles in Egypt and Iran and Afganistan, and at home with Obamacare will be dealt with long after I am gone. But it is still interesting in some darker sense.

-Tom
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Old 02-05-2011, 10:57 PM #9 (permalink)
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Default Re: Losing Interest in Outside World

My new blog post today dealt exactly with this subject

ALSucks! Observations From My Life With ALS: Walking On Sunshine
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Old 02-06-2011, 10:40 AM #10 (permalink)
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Default Re: Losing Interest in Outside World

My PALS rarely leaves the bedroom. or his bed. If I hoist him up it is only to be placed on the side of the bed where he perches a little precariously. Only way he can tolerate the mask off to eat and drink is sitting this way. I need another person to help me hoist him and Bipap and battery to the electric chair and we don't have the carers that often. So when we do have them I may take the chance to leave the house or we may need to do other care duties. He also does not find the chair that comfortable. Last time he went out the room up the hallway was before Christmas but he felt lightheaded and really not comfortable. So it was only for a few minutes.
We have replaced the bedroom window with glass doors and am having a deck built out from them. I have a hope that perhaps we can wheel him outside on to the deckin his bed. We live in semi rural area and would like to get him outside with the trees and sun and birds etc.
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Old 02-06-2011, 11:16 AM #11 (permalink)
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Default Re: Losing Interest in Outside World

Chris, the deck idea is wonderful. You have your hands full, but I hope he can get out on the deck. My husband did that for me last spring, and anytime I was able and the weather comfortable, I went out there to soak up Vit. D. Glorious.
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