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Nuts

Extremely helpful member
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Joined
Feb 23, 2014
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2,549
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01/2014
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Littleton
Tillie, I love those hugs! Thank you--you have been one of my rocks through this entire experience.

The son I spoke to yesterday is coming Wednesday through Friday. the entire family can't make it right now, but he's the most important at this point.

The daughter who didn't want to do anything biological just got up at 4am to help me do a cleanup. I'm so glad for her that she has been able to do this for her dad--it will mean a lot over the years. She has been a rock this week---people continue to surprise me.

We continue to do the breathing treatments and cough assist, and last night there was a HUGE amount of gunk coming out of his lungs. More than ever--including during his many pneumonias. I just had to do another treatment (4am) I wonder if this is part of the process at the end. Laurie?

I feel strangely calm, although I find myself grinding my teeth all the time. I pick up the new mouth guard Thursday...finally.

Today I really need to call the local funeral home. He wants a service in the church he grew up in in Virginia, so he will have to be embalmed before being transported. Oh, and look for pictures. And put the ribbons and such back on his AF uniform, which has been cleaned and made ready for him.

I just want to go upstairs and sew when I'm not with him, but there will be time for that soon enough.

Now, lets see if I can get a little more sleep...
 

dldugan

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Oct 5, 2018
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203
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PALS
Diagnosis
09/2018
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US
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illinois
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Mahomet
Becky, thank you for the posts. I was finally diagnosed in September and you are helping me understand the complex relationship between the CAL and PAL. You are doing a great job. It is clear that you shared a deep love.

I wish the best for you as you traverse the rest of this journey.
 

Narrowminded

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07/2007
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Becky - hugging you long distance. Praying those who need to come in will be able to make it.

As others have said, there is nothing you “have” to do right now. Do what you feel is right.

Luv you
 

chally

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Apr 23, 2015
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1,255
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02/2015
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wv.
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renick
Becky you and Matt have been a major support and help for me and Beth

Sending love and hugs to you guys

Matt will soon be free

Love ya
Beth and Chally
 

azgirl

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Jan 20, 2014
Messages
956
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PALS
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12/2013
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US
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Tucson
this is als at its worst. So sorry Matt and your entire family have to endure this pain.
Becky you have been super cals, the love you have for your guy comes through in every post.

love to you and Matt
 

sassy

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82
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CALS
Diagnosis
02/2018
Country
US
State
RI
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We thank you for your informative posts.....sadly- we have learned so much from reading all of them. I started to cry when I read that you got his AF uniform ready. This disease is such a sad reality..... wishing you strength. We can feel your family love in every post.
 

lgelb

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I could imagine more gunk coming out just from muscles relaxing more, if that makes sense, Becky, if he does not have a new infection. So it's good comfort care to keep doing those as he needs them.

Glad the son can come out and the daughter is stepping up.

As for the others, if/when he's lucid he might like to see a face or two on your phone, or they might like to watch him sleep for a minute or two.

Best,
Laurie
 

ThisPresentMoment

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Joined
May 30, 2018
Messages
123
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Lost a loved one
Diagnosis
12/2017
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MN
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Minneapolis
Tears. The grieving starts at diagnosis and continues. I am so touched by his concern for you even through his pain and your strength for him and the entire family. Sending hugs and love to you and your family as you say your goodbyes.
 

Nuts

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Joined
Feb 23, 2014
Messages
2,549
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
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didugan, my PALS friends here have helped me understand my husband in ways that they and he will never know. If I have done for you a fraction of what they did for me, I am grateful.

Sue, Chally, and Kay, you are my heros. Thank you. It is fear that you won't be here that often kept me away these past couple of years. Selfish, I know. Chally--I am so very very glad that we all met in person. Beth is an amazing woman. Please kiss her for me. As for you, keep clowning around. Sue, you are much stronger that me. I can't imagine doing what you've done for so long by yourself. You humble me. Azgirl--wow. Just wow. You have taught more people about ALS, about embracing life, and about creating a movement (you are a rock STAR), than I'm sure you ever expected.

Laurie, thank you. Relaxing makes sense. You always make sense!

PresentMoment, you are so right about the grieving. I am probably strong right now because I've been grieving for so long. I pray that I have compassion and patience today for this who have stayed away and now want to show their tears. Again, I do this for him.

Yesterday I settled on this Sunday to set my sweetie free. The family will all have been and/or be here. Yesterday in the midst of his crazy and during the few moments he was awake he said very clearly "I don't want to know, don't tell me". Nope, honey, I won't. What I told him is that everyone is coming to visit him and we will have a party. He does not want them all in the room at once--he can't handle that--so we will rotate them through. Eldest daughter has door guard duty and will stop anyone who starts crying or talking about loss. Love--only love

He does know on some level, of course. He's been waiting for his dad to visit. I'm still not sure that he won't upstage us and make his exit on his own schedule.

Something else I learned this week: once the decision is made for a loved one who cannot make it he or her self, waiting makes no sense. It seems to at first, for all sorts of scheduling reasons, but planning death is unnatural, and waiting for a planned death unbearable.

Something else I find myself thinking about is removing the vent. The nurse manager for our wonderful agency will be here prepared to do it, but right now I think that task is mine. Mine should be the last hands tending him. I think. Now. On the other hand...

In the meantime, I find myself impatient with people who want to cry--Even those who have been here with us through this mess. I can't do it yet and I don't need them doing it. I try to remind myself that they feel helpless, and only my need to carry through with Matt's wishes is giving me strength--a crutch they don't have--so I try to be tolerant. It's not easy.
 

Nikki J

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Joined
Mar 22, 2012
Messages
9,357
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Diagnosis
04/2014
Country
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MA
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Boston
Becky you are amazing woman. Sending love to you and Matt and those around you
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
632
Reason
Lost a loved one
Diagnosis
08/2014
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US
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NJ
City
X
Becky,

Your strength and love for Matt amaze me. I pray for peace for you both.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
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AZ
City
Tucson
oh Becky, it is so hard to let go but you are doing the very best for your guy. You describe exactly what I want. Surrounded by loved ones but no crowds. Definitely no tears around me. Just love and soft touches.
Matt has had an amazing life, and you are such an important part of that.

it's time to fly free and celebrate a life well lived,.

love to you Becky and Matt and all who love him.
 

KarenNWendyn

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3,762
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OR
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Southern Oregon
Becky, you and Matt are beautiful people. I feel so much love when I read your posts.
 

Jlynn

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Joined
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Messages
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Lost a loved one
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12/2015
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US
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NH
City
Wolfeboro
Wow...such a strong and inspiring woman. There really are no words.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,628
Reason
Lost a loved one
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07/2007
Country
US
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PA
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Pittsburgh
Becky you are so strong. You are my hero. I don’t think we will know about removing the vent until that exact time comes. I don’t think I could do it, but then when it would come down to it, I don’t know.

I understand the desire not to wait. I know he wants to see his Dad, so that needs to happen. What about the friend that was to come later in the month?

Please know I’m sending hugs and prayers. The love you have for Matt and he you, has always been so evident. You have been and awesome CALS and put me to shame.

As you know, we do what needs doing and well, I’ve been at this so long because it has to be done.

Hugs my friend
 
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