Decisions...

[Nikki J]

Earlier is better. Aside from the being where you need to be before it is an emergency it is better to move and forge new connections while you still can.

I did not. I should have.

 

[JimInVA]

Darcey continued to drive until it was becoming more of a challenge to lift the foot off the gas pedal and then move it to the brake. One day, a car in front of her stopped unexpectedly. Darcey moved her foot to the brake pedal but wasn't finding the strength to get it to stop as quickly as she felt it should. Fortunately, she'd been keeping extra distance behind cars that she'd follow. That experience was enough to encourage her to face up to the fact that she should no longer continue to drive. She described it as truly bitter sweet. On one hand she knew it was past time to give up driving... she'd become a danger to herself and to others. But it was disheartening to give up that one independence that she'd earned in her youth... and to recognize that all future travels would depend upon someone else. She found her balance in that choice with the knowledge that no one was hurt due to a stubbornness to continue driving. And I've certainly not minded being her chauffeur, at all.


My best...


Jim

 

[KimT]

Some of us are in a position that decisions are impossible to make because there are different options and none of them are great. Eventually, I'll have to decide how long I can afford to live. It sounds horrible, but it's true. I wish we had a local group home for PALS without CALS so the cost could be split. Another PALS, an attorney, who lives alone and I thought about this when we met at a support meeting and were both just diagnosed. She didn't want to leave her home but now she wants to get into the Gleason Home in New Orleans. I had called them to find out cost, etc.

 

[Narrowminded]

Brian was trached and vented 8 years ago in Aug. 2 years after that we gave up a home we loved. It was a two story colonial in a hill side, so everything was steps. We had used a stair chair and made a bedroom on the first floor and a handicap bathroom in the basement. However, it was not longer enough. We moved to a townhome with a first floor master, level entry and doorways that were 36” and easily accommodated the power chair. However, it was hard leaving the memories and the neighbors. We too were there 18 years. I could call any of the neighbors and they would be there for me, even in the middle of the night.

This new home is new. We’ve been here 6 years next month. However, I am just now getting to know a few neighbors. When you can’t be outside or join the social events, you don’t meet people. Most are older than we are at 56. It’s a beautiful home, but I miss my old neighborhood.

However, we probably should have moved sooner, before the vent. Brian wanted our daughter to graduate HS first. That’s the year we moved. Not sure I will stay here when this is over.

Hugs

 

[Clearwater AL]

Not for boast… just the rest of the story. Maybe more so for the guys.

We have three vehicles, the car we are going to keep. There’s “My Baby”…
a 2002 heavy duty SUV with a 5 ton trailer hitch in mint condition with
a big trailer to go with it. Hooking up that trailer is over.

We have a Jeep we were going to restore… that ain’t gonna happen.

I have a small tractor with implements, climbing up on that now is
about over. For some strange reason the clutch is nearly impossible
to push down.

(Ten years ago, after many years, I was getting the thoughts to get a
Harley. Now I’m glad I got ZERO support from Ann on that urge.)

I can’t be here when all that goes. When it’s over and the auctioneer tries
to hand me the report… I’m not going to read it. Just give me the check.

This isn’t going to be some big windfall. Ann and I got a late start,
2001. I’m 69 years old with a four digit monthly mortgage payment and
a chunk of it to pay off. Most people at my age have their homes
paid for. We do have some built up equity.

Anyway… IIWII (it is what it is), NSTS (nothing stays the same)
DWYGD (do what ya gotta do) DLB (don’t look back) and WBF
(we’ll be fine) :-

PS. The one thing that doesn’t go… is my big charcoal/gas outdoor
grill. I told the realtor the next place must allow outdoor grills.
It’s something I still can do. For now.

 

[affected]

The last time Chris drove the tractor it took two men to put him on and two to get him off, and a lot of effort at that!

 

[Narrowminded]

Al,

Brian bought a Honda (the model escapes me now) but it was a 1750cc engine, bought 2 months before DX. He really wanted a Harley, but didn’t want to pay the price. This one was close. He still had his Shadow 750. He ended up selling the big bike to one friend and the smaller one to another. The guy that bought the big bike, made an MP3 of the engine revving for him.

Hugs

 

[Lkaibel]

So true with no rhyme or reason sometimes. My husband looked in the very beginning to be a fast progression. His drop foot, then the hand weakness so close together. He was Dx'd fast...
Two years later he breathes and talks normally and just recently became a pivot transfer. He stayed pretty still with only the smallest progressions for about 16 months. Now, we are going faster almost two years exactly out from diagnosis. Not a straight line for sure.

Choices. So many, too many. From the cane to the walker to the chair and bed. From feeding himself to not to conserve energy. Driving stopped about a year ago. We tend to leave off doing things before they leave us.

 

[Clearwater AL]

A new decision. We spoke to someone who had parents in a situation
similar to ours.

We now have to consider the decision of an assisted living community.
So much for the outdoor grill. I'm trying to keep a sense of humor
through this.

As I have written previously, Ann has been diagnosed with Alzheimers.
She is in the early stages but it’s there. I deal with it everyday.
Everyday I pray for patience and wisdom. Some here may think it
isn’t working. (See last paragraph.) So, in a way now I’m also a
caregiver too.


Our future is going to get real interesting. My family lives in the
Central West Coast of Florida. Most of her family lives in a very
small town an hour and 45 minutes from here. Ann and I are not
small town people.

Anyway, often at the end of the day I read DIHALS threads where
some 19 year old or 25 year old writes a numerous paragraphed rambling
and whining about the after effects of working out jerking some 40
pound weight, or after running 5 miles and later they twitch, or posts
pictures of a beautiful leg or foot, some self centered overly
self focused anxiety patient who’s thread is rambling on to two pages
and possibly three… my “You gotta be kidding me... enough.”...
My BLUNT kicks in. Like Greg's sometimes licks in.

They have no idea. No idea.

 

[Atsugi]

They have no idea. No idea.

Thank God.

I stopped explaining Krissy's ALS to people: the men just say wow and the women cry. Worse, they try to hug me.

 

[KimT]

Al,

I'm so sorry both you and Ann are going through this. Some assisted living communities do have outdoor facilities, including grills. Florida would probably have more choices because of the number of old people here. The real challenge, I'm sure, will be finding one suited to both ALS and Alzheimer's.

My brother is beginning to exhibit dementia and is also getting feeble with walking and doing things with his hands. He's 82.

Every week I buy a power ball ticket and imagine all the things I could do for people with the money.

Sometimes the DIHALS folks need your blunt.

 

[KarenNWendyn]

Keep the outdoor grill and bring it with you wherever you go. You just never know — you may end up being the grill sergeant for an assisted living community! Grills are easy enough to pass on when you no longer can use them.

Best of luck to you and Anne.

 

[wishmobbing]

Al, so sorry to read about Ann's Alzheimer's here! That is scary. You'll need all the help you can get.

By mere luck we moved to an accessible apartment in an assisted living complex last fall and I love it, I don't even miss my old apartment anymore. I'm 37 and by far the youngest here, we still listen to very loud rock music and the neighbors are super nice and a bunch came to our birthday party and brought lots of wine. It's mostly old ladies who lost their husbands since they moved here five years ago and ask about my PALS and seem to get what this is about much quicker than many random folks. All of them have been through some hard times and can relate. But what's best is that they enjoy living here and are open and welcoming.

 

[affected]

Al just to be weird - I have two friends that are PALS here locally in rural Australia. One has PLS and one has very slow progression ALS and both have wives with Alzheimers. The one with ALS has just moved into an assisted living facility.

I hope you find something that really appeals enough to you both, with the practical sides taken in account, to ease the selling of your home.

 

[Nikki J]

There are in many place communities that run the continuum from independent to nursing facilities. They often have memory care. A place life that might be able to allow you to stay in same setting even if you had to move from your initial choice.

It also might be a safety net in a situation where a place works for the two of you but would fall apart if one partner becomes suddenly completely incapacitated or dies unexpectedly

None of this is easy. My parents had the situation of one being physically disabled when the other was mentally impaired