Old 11-21-2004, 10:30 PM #1 (permalink)
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Default Going it alone

My father, who lives alone, has just been diagnosed with ALS. 18 months ago, my mother died from colon cancer. It was an unbearably stressful time, and within weeks of the funeral he developed walking and hand problems. He also cut his finger off accidentally around this time - and sure enough, his hand was the first to weaken.

He has spent this last 18 months dealing with grief, and now this diagnosis. Is it a possibility that emotional trauma combined with physical trauma triggered ALS?
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So now, he lives alone on an acreage in the West Kootenays in B.C, a relatively remote area famous for it's cutback in medical services. For example, he had to travel all the way to another province (Alberta) to get a proper diagnosis. Hard, when you can barely walk.

It seems so overwhelming. How do we help him get through this? He wants to stay in his area, in his house, as he is most comfortable there. But there are stairs and a long walk (snow in winter) to the carport. How is he to manage day-to-day, alone? Is it realistic to stay at home for the winter (he falls a lot and has very little function left in his arms). I, his daughter, live 11 hours away, and have a baby. I am considering moving there to be his caregiver…I cannot bear the thought of him dealing with this on his own day to day. But I wonder about doing this with a baby. What are the options? I don't think he wants to come to my town, and leave his community behind.

However you look at it, it is heartbreaking. The other option is a full care facility…but where, and when? At what point to you make that decision?

I have so many questions, but i will leave them for further discussions. I just wanted to introduce myself and the situation, as it seems like this forum offers a lot of great support.

Marcia
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Old 11-22-2004, 04:10 PM #2 (permalink)
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Default Tough Call...

Marcia...

I have limited use of my arms/hands also (I am able to type left handed with my mouse and the On Screen Keyboard software that comes with XP).
I need help dressing, showering, eating, etc.
When my wife works, we have Homecare in (3 to 4 times a week) to help prepare meals and do physio-therapy. We also have an amazing group of friends and family who help out here in Calgary.

Your father should be where he is most comfortable. In light of your families' loss and his recent diagnosis...putting him in a care facility might not be the best thing for him (in my opinion). He'll get the physical care he needs...but what about the emotional care of having his family near.
Being 11 hours away, it (obviously) must be a tough decision. I do believe that if you do move in with him...you won't have any regrets.

For me...having family/friends around is most important.
I've said this before...
Miracles happen everyday...maybe you and your baby are the piece(s) that will make your father's miracle happen.
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Old 11-23-2004, 07:10 AM #3 (permalink)
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My husband and I are going through a similar situation. I also have a baby and will be my father in-laws main caregiver. I know that my son is a wonderful distraction for him and is the only one that can bring a smile to his face. I think it would be great for your father to live out his days being with the people he loves. It will be very difficult and you may want to seek out some outside help if possible. Get all the information you can and try to create a support system. Good luck with all of this! I'll keep you in my prayers.
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Old 11-23-2004, 09:09 AM #4 (permalink)
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oh marcia, i really feel for you and your family.
have you contacted the als society in your area? here is there website: http://www.alsbc.ca/ i'm sure that they could put you in touch with the proper gov't services to help your dad.
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Old 11-23-2004, 11:08 AM #5 (permalink)
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Thank-you for the replies. It really helps. We have made some strides today..getting a medicare system, contacting als BC, and homecare. I have decided to go out there, with baby, for January. Mikes comments about being around family and in particular (only) grandson really struck home. My husband is not too happy about having us leave for an extended time.

One of the problems is that this area is so hard to get to - the options are driving 11 hours through mountain passes or flying to Castlegar, where planes never seem to land! I was just out to see dad, and because of snow, they landed the plane six hours away and we had to take a bus the rest of the way. The bus dropped us off late at night, at closed airport, with no taxi to a hotel - Dads place still being two hours away. An hour flight turned into a two day adventure. A nightmare with a baby! Now you can see how difficult it is for him, or anyone in that area, to get proper medical care.
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Old 11-23-2004, 11:35 AM #6 (permalink)
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Hi Marcia

I am in agreement with everyone as far as keeping your dad t home as long as possible but I think while you are up there you should be trying to convince him to come to stay with you. It sounds like a no win situation way up there in the woods. You are away from your husband(hard on him and marriage) You are isolated in case baby or you or dad gets sick (hard on everyone) It doesn't sound like there are medical care facilities anywhere near that would be able to help him if he got pneumonia (a very real possibility) or any other complications from the disease. If you have the room at your place I think it would be better and less stressful on the whole family. Try to explain to him that it is better for him and you and your family. Just another opinion and idea. Hope it works out for you.
Take care. Al.
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Old 11-23-2004, 05:26 PM #7 (permalink)
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Hi Marcia:

Gladly, Al put in his 2 cents before me... so all I have to do is agree with him. I cared for my wife at home for 4 years and it is believed that home care can account for considerable longevity with ALS. (The nurses told me!) While I agree that it is important for your dad to be with you, and Castelgar is beautiful, it is probably safer all around for him to be with you and your family if you can swing it... wherever you are. Especially if it is in an area that is close to a major medical support facility and ALS clinic. It's a big commitment for everybody, you, your family and your dad.
I wish it was easier for you... Good luck!

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Old 11-23-2004, 08:39 PM #8 (permalink)
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Hi, to all the group.
I will add my two cents worth in and agree with the majority. Everyone has made good points and what Al said also was if anything was to happen in such a remote region to any one of you, especially with a baby is risky.
If you can, bring him home with you and set up as much in house care the government will supply.
Good luck.
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Old 11-23-2004, 08:52 PM #9 (permalink)
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Hi Marcia,

I just wanted to say that I'm sorry you're going through this.

Ultimately you will make the decision that works best for both your dad and your family. I do agree with Al and the rest that in such a remote place it might be hard for you, the baby and your dad...perhaps having him come live with you might be a better arrangement. If you have the extra room bringing things that are familiar to him from his house might help as well...

it's such a hard decision...

My prayers are with you.


Gisèle
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Old 11-23-2004, 09:54 PM #10 (permalink)
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Aahhh, so much to think about! There is the ALS, and the obstacles that confront him (us) in dealing with it. The place where dad lives is not entirely remote, he lives near a village that has a small hospital (that only sometimes has a locum doctor!) but in that hospital is a few extended-care beds. Most people there have alzheimers. So there is at least that, if he does not want to move out of the area and he gets to a point where living at home is too difficult. But I will also push for him coming here...as gently as possible.

I have discovered that there is an ALS support group in Nelson, an hour away. This is very encouraging, except Nelson is an hour away, on a very windy mountain road. But it is something! We will take our positives where we can find them.

In spite of the physical difficulites associated with the disease, it is the mental aspect that troubles me most about his welfare. How does one keep positive? The answer apparently lies within the family link, as you have all stated clearly. He can't do it alone. So one way or another, we will figure it out.

One question - What alterations should we expect to make in our house in order to make it workable for dad? I anticipate he will be in a wheelchair in the next few months. Unfortunately our house is quite small, but I think it will be ok, should he decide to come here.

Thank-you all very much for your thoughtful replies. I will keep you posted.

Marcia
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Old 11-23-2004, 10:55 PM #11 (permalink)
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Hi Marcia,

The living with als website had a lot of CALS and PALS discussing modifications to their living space/homes reading their posts might give you an idea.

http://health.groups.yahoo.com/group/living-with-als/

I'm sure you'll find some answers as well here. My brother has ALS and so far we haven't had to modify his place so much, but soon he will need a commode as his wheelchair will not fit in the bathroom...

Take care.

Gisèle
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