A CALS wish to PALS

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KatieNBoyd

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Hello, I do not want to impose myself on the group but I have a tiny request that I wanted to put out there.

My PALS, my husband was diagnosed in Oct 2015 (there were signs that began Dec of 2014) he left me Friday Dec 9, 2016. He had ALS + FTD so most of the things that have happened in the last 8 months were not of him in his right mind and I know that now.

I am going through his desk today and his computer. I am looking for something I know is not here. Jon and I were the perfect puzzle piece to each other from the first time we met ten years ago. He would leave me notes (on my car, my pillow and other places. Sometimes just a little heart drawn with his name.

Here I am without him now and I was hoping to find one last note. Something that tells me I did alright these 14 months. It is not here. It makes me sad but I know in my heart I did everything alright. I kissed him often (and he kissed me), I hugged him every time we touched.

I have found older notes that I have sent to him which makes me feel good that he kept them.

So, my small request is that you PALS leave a tiny note for your CALS that says they have done alright. That you have felt their love and understanding through this. Leave it somewhere that when the day comes they will find it and find joy to know they have done alright.

Love you all
Katie
 

texastc

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You did it right Katie. You kept on loving him...and he, you. The daily battles you've been fighting will fade from the front of your mind with some time, but the love will remain. I promise. You did it right.
Sorry, didn't mean to hijack.

tc
 

affected

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hugs Katie, I know what you mean. What I would have given for a note like that ... xx
 

lgelb

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Katie and all former CALS,

I understand where you are coming from. Larry was well past desks and notes for some years so I had nothing to expect in that realm.

But I can draw on our time together and what we shared and spoke of, any time I need to know that what he thought of my care would be of a piece with everything else he thought about me and our family.

Best,
Laurie
 

Atsugi

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When Krissy was diagnosed, I gave her a leather-bound journal so she could express herself privately in writing or perhaps leave us some of her thoughts and feelings. After she passed, I discovered one page written to tell me she loved me. Several pages she used to document her analysis of her first symptoms. One page each was titled with our kids' names, but apparently she lost the ability to write before saying anything to them. For posterity, I wrote to the kids in that journal, telling them what their mom would have said if she could.

The idea of a journal is an emotional thing. I am very upset that she didn't/couldn't write to our kids. I haven't told them about it, but I will soon. Yesterday, as the kids were putting up the tree, the journal fell out of a box and I couldn't hide my tears. It's been 5 years but I guess it won't ever completely go away.

On the other hand, some PALS are, perhaps, maybe, as highly focused on their own situation as a man facing a firing squad. I don't know what it's like to be a PALS, and I won't pretend to guess. They might not want to leave a note. Writing down a "final note" might be quite a difficult thing to do.
 

WendyWooG

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Firstly I hope it's ok that I am posting in the cals area but I felt this was directed as much at pals?

Katie,

Done.....

My husband is not one to talk about arrangements future planning etc. So I have a note on my iPad that lists all my medical wishes, funeral wishes etc. I update this on a regular basis as things change and my family know it's there and where to look if they want or need to. Your post touched me and I have added a message to to my family telling them how much I appreciate the care and love they have given me. I tell them myself all the time but I think you are right putting a personal note down that they can look at will reinforce that and if it helps in the grieving process that make me feel more at peace with what I am putting my family through.

The last thing I would want is for them to have even a tiny regret an " Oh I wish I had done that" moment. I want them to know they did it right and that I felt cherished.

So thank you Katie

Wendy x
 

scaredwifetx

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I understand what you are saying Katie. Steve tells me thank you all the time. He let's me know verbally that I take good care of him. Even though, having something in writing after they are gone seems so special. It's the difference between sudden death and a slowly progressing one. I guess our minds just think that written feelings are important. We all know they were thankful...but having something to look at and read just keeps a part of them here.

I think that a progressive disease make the loss so much harder to move on from.
 

twitchykitty

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I have left a letter and cd with boys ll men song 'thank you' for mum my cals. After reading your post, I will add about being a good carer to make sure she knows.


Sorry for your loss
 

tripete

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I have often thought about this. I have considered setting up with a florist a bouquet for her every year for a long time (10 plus years). But have decided against it as I want her to move on and try to enjoy her life. I fear that a reminder of me would make her sad. A small note yes, but to much for to long might hurt her not help her?
 

Narrowminded

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Katy - hugs to you. My DH/PALS never has been a note writer, so I cannot expect one when this is over. I'm with you though and just having something tangible to say "Thank you, you done good" Praying you will find a sign that lets you know.

Hugs,

Sue
 

scaredwifetx

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Pete, I think the flowers are a wonderful idea. I am sure she will never forget the time you had together and she will feel the pain on certain days for a very long time. I think receiving flowers on maybe your anniversary for a couple years is a wonderful idea. The beautiful smells and knowing that you loved her so much will help to brighten that day instead of hurting her. Flowers or no flowers she will still wake up that day and think of you so flowers can only out a smile on her face.
 

affected

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CALS go through a lot of emotional turmoil about their abilities as they battle against a disease that is going to win no matter what we do.

When the PALS has FTD it is another whole ball game. No one understands this truly unless they have been through that extra horror.

The amazing PALS here who do not have this, show empathy and love towards their CALS and yet I know that every CALS experiences turmoil. So whatever you can think to leave behind that will just give your CALS a little reassurance would truly be worthwhile xxxx
 
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