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Clearwater AL

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PALS
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12/2018
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Get Real
(I questioned whether to post this or not. Some may take it wrong but it may
bring some conversation to this sub-forum. And… I’m not sure what
sub-forum it belongs. Mods… move it if need be.)

This is about decisions many of us face. First, I no seek of sympathy, Ann and
I have been very blessed, we have excellent health coverage, some financial
means and so much more. For those who may remember my posts where I have
several times remembered those who don’t have good insurance or little financial
means dealing with this. I think of them often.

This past Friday we made a decision that was hard to make… we called a
realtor who sold us this house 18 years ago. At the time, 18 years ago, it was
our dream house come true. Three acres, on the side of a hill, cut into a notch
of 100’ oak trees, two car garage in the basement and two floors above that
have stairs. Now it’s time to sell, down size and find something on one level.
She came last Friday.

The upkeep now is more than I can handle. The leaves in the fall, walking
to mail box is uphill, there is nothing level on our yard, it’s either uphill or
downhill, Now it galls me to no end to pay someone to clean the gutters, cut up
trees and tree limbs that fall and even put up the Christmas lights. All things
I used to do.

I’m sure many before me had hard decisions to make. New members joining
today and in the future will face them too.

My Neuro really pushed for this, something I kept trying to put off but I gave
in and had my appointment with Palliative Care at the VA with PalCare Neuro
Dr. Brian Talbott. I learned it is good to get things in place early. The Palliative
Care Neuro helped me with the decision concerning the house.

Making decisions… to give into a walker, the drivers license thing, giving
into a power wheel chair and quality of life decisions later. I wrote all this to suggest
it’s never too early to make decisions. Maybe not the drivers license thing though. :)

Maybe some will share hard decisions they have made and yet to make.
I’d bet CALS know this topic well.
 
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Yep.

I gave up on the driver's license the day I almost hit a telephone pole because my arms were weakening.
 
Important issues Al. And I am sorry about the house. Moving vs remodeling, driving, working are all big things that involve heavy losses. We talk about them less than the issues around equipment- wheelchair/ mobility, gtube and respiratory support but they are a big deal and really more complicated to manage.

I talked to my neuro palliative doctor about them too. I think you are right that earlier is better for a lot of reasons

Thanks for bringing this up.
 
One of the most important threads I've ever seen.

Yes, discuss these matters early. Document your decisions in a lawyer's office. Re-think your decisions as needed, but start very early.

My Advanced Directives and my health surrogate decisions are the very first pages of my Electronic Health Record.
 
i am sorry that we are forced to give up what we work our lives for. in essence though isnt that what theses ilnessws do? they remove all that we spent our lives working for. in the end it will leave us with nothing. i hope that the decisions you make are the ones that best serve you and your family.
 
Really hard decisions Al and bringing it out in the open is a good thing.

It came far earlier than one would hope, but you have those 18 years of memories.

I hope you find your new home holds a great many things that will make it a wonderful place to live.

Thanks for bringing this up - huge stuff.
 
Al,

Thank you so much for starting this topic. Losses are hard.

I had just finished remodeling my "retirement" home when I was diagnosed. I had several contractors evaluate it and it was just too small for another person to live there or for caregivers. I probably could have remodeled the remodel but I had to decide if this was really a long-term solution. It was not.

I ended up selling and buying a much larger condo in what I consider a better location for me. I still look at pictures of my other place and remember all the happy memories I had with my brother (now 82) and many friends during the dinners and events I hosted. It was hard.

Fast forward a couple of years and I'm so glad I did it when I did it. Beach side prices are going up and, had I waited, I think I would have been priced out of this place by now. In my case, finances came into play and still do.

I know there is more to do and more decisions to make. But there are also more memories to make and more love to give.
 
Rewind 9 years-- Larry and I were very happy where we were when he was diagnosed, but switched coasts a year later to be with our son. I remember crying when I gave notice at our apartment building. Admittedly, my fondness for the place eroded somewhat when they tried to hold us up for the full lease term rent, which was against the state law allowing medical terminations. Having to argue that ALS was a good medical reason (multiple times, in writing, finally appealing to the millionaire developers) was a fairly bizarre exercise.

In retrospect, it was the right thing, of course. But I would never have believed it then. It was the move from hell.

Al, I'm sorry about your beloved home but glad you and Ann got a fair amount of time in it. Knowing you a tiny bit, you will find great happiness in a new home, because the ability to be happy is something you carry with you.

Best,
Laurie
 
Yes AL, it is a tough decision. I'm dealing (procrastinating) with the same decision.
Good luck!
 
Again, not want of sympathy. I’ve been looking at one level town
houses with a garage online. Funny, I’m kinda getting with it.

Except for one thing. When Ann and I met we had something that
not many have in common as young as we were 25 years ago…
I was a widower and she was a widow. The things we shared
talking brought us together. We have so much stuff from our
previous lives… it’s here. A big storage building out
back that is packed solid. I have a full shop downstairs, tools,
power tools, carpentry tools, yard tools and chain saws.
Power tools that are now too dangerous for me to operate.

Back to the “except for one thing.”

We are going to have an auction. We have to.

We can not be here when it happens. It would be too much, too
hard for both of us to watch. There is so much we will be giving
a lot to the Salvation Army.

Maybe making decisions isn’t so bad… letting go is the hard part.

I’m sure others have gone through the same.

PS. I have to correct something from my secret source in my
opening thread... Dr.Talbott is not a Neurologist. He is an MD
who handles PalCare for the VA at Durham. Sorry.
 
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Not being there for the auction is a really wise move, that would be awful to watch people pawing through your lives and bickering.

Once all that is dealt with you may well find something you both really like, even though it will be so different to what you had in this place.
 
Happy to hear that you're getting with the new idea. Giving away stuff you loved to buy and use is hard. But it can be relieving, too. A weight off your shoulders maybe.
 
It's interesting how things we own can have a place in our hearts. I had a hard time parting with my 10-seat dining room table because of all the memories. I'm not usually at all sentimental with things but the table had a particular significance since my sister-in-law and I drove to Orlando to pick it out and that day is full of good memories. I brought it when I moved but it was just in the way only to be used occasionally. Sometimes I imagine a large, happy family gathered around it.
 
After being diagnosed by three neurological consults and a full-on evaluation by the ALS Clinic, I still think that I have a "long time" before I need to make some tough decisions. I think this because I can still walk (using a rollator and AFO), and my breathing is good (using the cough assist and trilogy), and my overall weakness doesn't really kick in until about noon each day. Yet in the dark recesses of my brain, I know the beast is lurking.

We had downsized to our retirement home and had things "in order" when this happened. We've lived on the same street for forty years. And we know this house will not accommodate this beast. We know that family and support friends live too far away now. So how much "time" to prepare is "enough time?"

We've met with the ALS Organization. We've listened to the medical people. We are (in my opinion), reasonably intelligent people. We know that early preparation is essential if possible.

We know this. Yet we cannot, for some reason, at this point, make a decision to find another home, in another part of the state, and make the move. We keep thinking that there is a lot of time before this will be necessary. I hope we will not be too late in doing so.
 
We keep thinking that there is a lot of time before this will be necessary. I hope we will not be too late in doing so.

I'm sorry, Outlander. I know how hard this disease is.

I had planned to build a house to fit my PALS needs. I had the money and the plan.

But my PALS died 9 months after her first symptom.

You just can't tell.

We need to prepare early.

Here's a little computer programming to illustrate:

IF Today = head IN sand
THEN Tomorrow = problems FOR everyone

Wishing you much love and comfort in this very trying time.
 
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