A Long, Slow Downhill Roll...

[Lkaibel]

My husband called me up today at work and said that he was not going to be able to let our housekeeper in because no matter how he tried he would not turn the doorknob.

He DID end up getting the door open. A Life Alert is coming our way, and that will have a key box on the front of the door and he will be able to just call out (not even have to push a button) for help if he needs it.

Today, he can still walk with a walker, feed himself, has a slowly diminishing use of his arms and hands. Plans are being made for more help. Someone to come in a few hours a day to start. We know it will be more than that soon. More equipment. A power chair. A chair lift for our few steps down from the first floor where he now lives his life.

We were blessed to get a portable shower and a hospital bed and a manual wheelchair all from the ALS Society.

Brian chooses not to leave the house any longer except for rare medical appointments. He does not like being "seen this way. I don't argue. I have told him I will always be happy to take him out. I would rent a van if he wanted to go out in a chair. He said going out makes him sad and reminds him of what he can't do.

I am not asking for solutions here, just making observations about his choices, just sharing what I see daily. Contrary to what this might sound like, he does not normally act morbid or sad. He watches TV with me, follows politics avidly for one thing. Still loves our animals. His mind is intact. No FTD is apparent. He can still eat and talk.

I do still have a wretched time knowing that the man who built our garage had to struggle with a doorknob today. I am glad that I still get to go home, make dinner, watch the Sopranos on Amazon Prime and Talk to my husband and hear him talk to me. I know many CALS would be overjoyed at that. I am very, very glad we still have all of that.

Realistically, though it's slipping through our fingers and I can't stop it. It's 2018, and we can't stop this.

That is so not okay, and I am not okay. I am growing to understand however that sometimes it's alright not to be okay.

 

[Narrowminded]

Lenore huge hugs. How I remember those days of, yikes I can’t do something I did just yesterday. He may, one day, decide to go out again. But I can sympathize with why he doesn’t want to. People are rude.

One day when Brian was still able to transfer from a wheel chair to the car, I was getting set to do just that. We had come out of Lowe’s and I had pulled the car up to the front entrance, but as a courtesy to others, I pulled up before the entrance, was not blocking it at all. It was starting to drizzle a bit, and the grills were where I was getting him loaded. I had the car door open and was getting ready to help him rise out of the wheelchair so he could then turn and sit down. A man came out of the store and I guess was parked the direction of where I was parked. Believe it or not instead of going around the front of my car, he walked between the wheelchair and the car. Thank God I hadn’t lifted Brian up yet. Talk about rude. No excuse me, nothing. We were not blocking the parking lot. So I get it.

I also get the feeling of life just slipping through your fingers. It does that a lot I’m afraid.

Many huge hugs,

Sue

 

[soonerwife]

So Sorry Lenore! HUGS! ALS sucks!

 

[Atsugi]

My PALS had a button nearby that activated the front door.

Just like in a store with automatic doors, this thing opens and closes the front door when you push a button.

I still have it, if you can get someone to connect to your door.

 

[scaredwifetx]

Hugs Lenore, it is alright to not be ok. It doesn't matter where you are in the journey with ALS, we all travel the road. Some have finished the journey and are here to help. Some are further down the road, some are just beginning and some are where you are. I remember when Steve was going through the loss of hands and feet and you were just diagnosed. It seems so long ago but not really.

We are 29 months in now and I can't remember the last time Steve went out and know he never will again.

So, no this is not ok, no you are not ok, no we aren't ok and yes it's ok...not to be ok. It's 2018, another year to come and go and we can't stop ALS. I wish we could Lenore.

 

[KarenNWendyn]

Lenore, I hear you. There’s nothing worse than feeling helpless and powerless that you can’t stop this thing that is advancing on you, and there’s not a darn thing you can do about it. “Sucks” is an understatement.

Hugs,

 

[Lscott71]

I understand about the doorknob. Every time something changes with my husband, it just breaks my heart all over again.

We’re 12 months in from when physical ALS symptoms started, but 2 years since FTD reared it’s ugly head.

I try to stay strong for him and my family, but I’m no okay either and would just like to wallow in and process these feelings without doing fake smiles and upbeat stories. I’m so tired of feeling like a big phony!

 

[vltsra]

Lenore the title of your post says it all. It's so hard to see this downhill roll...

Don't know if your Brian would try an antidepressant. Would that make him more apt to get out of the house? Fresh air helps a lot. My PALS has resisted the antidepressant so far. Of course, my PALS is one of the "lucky" ones...slow progression. Hard to tell him that when he sees his body becoming weaker every day.

Getting out helps both of us. We've sometimes gone to the movies during the day; last week we took our friend with MS who is wheelchair-bound. Not many people there on Thursday afternoons.

I don't think "OK" would describe any of us CALS.

V

 

[swalker]

I know you are not asking for solutions, but I will offer a suggestion anyway.

If you don't have lever door knobs, you might want to consider getting them.

We have lever knobs on every door in the house. I don't have to grip to door knob to be able to release the catch. All I have to do is put enough weight on the lever so that the door catch is released.

We also have single-lever faucets for almost all the sinks in the use. They too make a big difference.

Steve

 

[Lkaibel]

On the practical front, I am thinking about “smart homing” the entire house. I am hearing doors can lock and unlock and thermostats and nearly everything else you think of can be made to work with voice command at a reasonable cost.

Thank you so much everyone. I love how I can always come here and everyone just gets it.

 

[affected]

Lenore you always have a way of really cutting the heart of how all of this feels. I'm sure it's good for you vent it, but I always see how much it touches so many CALS and PALS here when you do.

Absolutely NOTHING about ALS is OK, that's an understatement!

Do keep talking here, it helps everyone. Tell us about how the smart homing choices work once you have them decided and running too please!

 

[Avocado]

I never realized how many things there were to lose until my PALS started losing them one by one. All those little things we take for granted become so enormous when you can't do them anymore. Just a little at a time, in the cruelest fashion. It's just so awful. I know where you are coming from.

I lost my brother to cancer not long before my PALS was diagnosed. I remember asking my sister in law how she was doing and she said "I'm okay, but I am not okay". That about sums up how I feel everyday. I'm never really okay. My whole reality has shifted- within the context of the fact that everything kind of sucks, now 'okay' just means I'm not at my most overwhelmed. I'm never really okay either, but sometimes I am more okay than other times. All we can do is do the best we can, and try to find little bits of happiness wherever we can find them. Hugs- Tara

 

[KarenNWendyn]

Re: Tillie’s comment “Nothing about ALS is ok”. I totally agree. However, I have found a few positive things (though they’re not worth living with ALS for):

1). You meet some really awesome, loving and caring people (like on this forum, eg).
2). You find out who your true friends really are.
3). You and your family (hopefully) become more tolerant and compassionate people.

 

[affected]

Spot on Karen - and as a CALS I would do it all again if I could have my Chris back.

Avocado another spot on - my Chris was rapid progression and he literally lost some functionality pretty much every single day. Each of those things were tiny losses, but for that they were enormous.

 

[Manhattanite]

Lenore in your writing I read the realization of how things are changing and the pain that comes with that, but also the ability to think on your feet and look for smart solutions. It shows how resilient you are!