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gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,501
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Having a moment tonight. Came home to a wheelchair/commode in the living room and a hospital bed in our bedroom. I am truly grateful for the help and I thought I was prepared...but I am not. It took my breath away.
Clinic was not great on Friday and tomorrow we have the end of life issues talk with decisions at the VA. Steve asked me why he was going to the VA...his memory is shot. Just venting but it is hitting me hard.
 
You can never be prepared all the way, Steph. Vent any time, any length. Any prep you need for the VA...

--Laurie
 
Oh Steph, it seems so fast when the time to change the home into a hospital-like setting comes. We are never prepared. I talk constantly of 'acceptance', and I reached that myself, and yet it is not a state you reach and just arrive at for good. It is a state you are constantly getting yourself to and then getting yourself back to.

I would imagine the worst after seeing the equipment was to have him ask why you are going to the VA. Seeing the person you knew wasting away inside as well as that outside wasting is so heart wrenching and I could feel it so strongly in your words.

I hope tomorrow goes as smoothly as this hard talk can go, and that you can get through it with Steve having some comprehension and acceptance of his own. I'll be holding your virtual hand hard all the way through.

Try and have your thoughts gathered by making a list if you can bear it tonight.
hugs


Tillie
 
The funny thing is we have talked about the end of life issues several times. But I think it was seeing the equipment without Steve comprehending what it means that has done me in. They don't want him walking since he has mostly lost his right foot...which is why he has had some falls, tho nothing serious. He has been choking with food but insists it is just getting caught an going down the wrong tube

Steve was announced intelligent man who caught nuance in conversation. It is all gone. It is heartwrenching.
 
Hi Steph, my heart goes out to you. Vent away, we've always got an ear to listen.
 
Oh Steph, my heart is breaking all over again and it's for you and your Steve. I remember the day the bed and Hoyer were delivered and how another piece of my heart broke off. Then the day the wheelchair arrived. It's so hard when we must face the truth while they can't. My house has equipment on the back porch, in the spare bedroom, in our bedroom and the only thing he will use is the cane. We take a chance of his falling each and every day as he has lost his left foot and the right is getting there. Steve also has choked on water and or food a couple of times. he insists it went down the wrong tube. Is is denial, loss of thinking or just them trying to avoid their losses as long as possible?

My Steve has refused to read or know anything about this disease and says he doesn't want to know. He thinks it will make him pay to much attention to his losses. I wonder at times if we as CALS do see every little change and have to deal with the heartbreak over and over again.
We are definitely taking different roles then our PALS and I don't think it should or can be avoided. ALS sucks for everyone and is so heartbreaking.

We also had to deal with the end of life paperwork and decisions. A horrible day for me. Steve went with the flow, signed the paperwork and has not spoken about it since.

I am so sorry that you are going through this. I will be thinking and praying for the both of you tomorrow. It is gut wrenching and so hard knowing that acceptance is not there with the PAL. Like Tillie said, we go in and out of acceptance and I am beginning to wonder if their denial is all that bad or wrong. I do know that Steve does not live with the dread of things to come like I do. I go to work and come home worrying about what is to come as he acts like nothing has changed. Sometimes I also wonder if is mind is trying to protect him or me.

I wish I could hug you right now. This is just so hard. Strength and love.
 
I'm so very sorry. We are all in this together. We know what you're feeling and I hope you can feel the love!
Michelle
 
I wish I could wrap my arms around you and cry with you for awhile, Steph. I'm so sorry. These moments when we are forced to face what we know but chose not to think about are gut wrenching, but seeing cognative loss is, to me, the worst by far. I keep telling myself that the short term memory loss is caused by all the drugs, and some of it may be, but searching for words or using the wrong ones-well, that's what's getting everyone's attention around here. Everyone's but his.

The equipment has never bothered me as I've been able to sees it as a way to mitigate losses. It's unspeakable that there is nothing to help with the cruelest loss of all (at least to us). On the other hand, perhaps that loss, if indeed it happens, will be a kindness to him.

Oh Geeze, this disease is enough to turn me into a bleeding heart liberal. OK, stiff upper lip and all that, right?

I love you, girl.

Becky
 
Becky said it perfectly. Feel lots of arms encasing you as this journey continues to the ultimate ccnclusion. My friend wrote "There are worse things than death" - and I think this reality is one of them. Thinking of you and Julien each day. Donna
 
One of the hard things is helping his parents understand where he is at and his capabilities. My son gets it although the commode chair was an eye opener. The two of them still think flying to the west coast in the summer is possible. How to make them all truly understand ? It is draining.
 
Steph - add me to the list of those with arms open wide. Equipment, for us, was obtained long before we needed it. When transferring started to become a "frightful proposition", that same equipment provided a sense of safety and security. The hospital bed got one night's use and then was ignored... until it later became the tool that provided the means to alleviate the pain that began to accompany not being able to move in our regular bed. And becoming familiar with the hoyer and the commode provided us the ability to go places and do things. We had some wonderful trips to other cities so that we could attend performances (Joe Bonamassa & Beth Hart) that would otherwise have been impossible to do. I do hope, that in time, you'll both be able to find good in these currently intrusive items.

My best...

Jim
 
Thinking about you and sending hugs. Really get what you're saying. Sometimes wonder if the cognitive changes end up a saving grace for our PALS. There are lots of things about ALS I hope all of us CALS can forget some day. My heart is with you and your son.
 
Gooseberry,

Aching with you. The changes are so frequent and we carers do watch those things carefully. You've been such a big support to so many of us. Giving you warm hugs, too.

Sherry
 
Thank you all. Your support and hugs have really helped. Sometimes you just feel so alone.
 
Steph - venting is good for the heart. Sometimes its surprising what hits us hard, like we just don't expect it and then, bam, we hurt. I know what you mean about feeling alone. As a CALS I find it a lonesome disease and often feel it's far bigger than my small shoulders can carry. One thing that hit me hard was the lack of strength in his hugs. He has always been a hugger with me, the kids, and anyone who visits. It seems like such a small thing in the scope of the disease, you know what I mean? All of the other losses of independence for our PALS but the hug got me.

{{hugs}} Mary
 
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