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Billard

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Feb 13, 2018
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Loved one DX
Diagnosis
06/2015
Country
US
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LA
For 3 years my wife has fought with everything she has to make ALS take things from her. Anything that could help make life easier was pushed to the side until it was the only option left. Her PWC sat as a dust collector for seven months, although for the last month, she was being pushed around on a rollator. (Stubbornness runs deep in her family)

She was Bulbar on set and didn't lose mobility until September 17. She's been the kind that if you don't talk about it, you don't have to worry about it. We discussed and she accepted Hospice to come in

About a month ago she lost her appetite somewhat, started eating about a third of what she was. Longer sleep patterns started setting in. Now this week when she woke up Wednesday she was struggling with violent coughing which leads to nasty tongue biting. She has only eaten one formula from wed till tonight. Mainly ativan and small drops of morphine with water is her only intake through the peg.

She now sleeps 16 to 18 hours a day. If she's awake she cries uncontrollably and just wants to be held. Hospice said she could be transitioning. I've been hopeful it's just a bad week.

Up till this week, you would look at her and think, there nothing wrong with her, besides needing the PWC. Laughing and brightening anyone's day that she came across. Be it there was some bad days, but more good than bad. It's hard for me to fathom her will stopping overnight.

Sorry for the sulking on my first day of posting. This was supposed to be me asking about transition. I've always tried to be the strong, I can do it all for her type husband. This week I've felt the weakest I've ever been.
 
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bkite

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Reason
PALS
Diagnosis
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Country
US
State
Washington
My prayers are with you both.

Bruce
(typed using eye control on a Tobii I12+) am
 

lgelb

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Billard,

No worries -- this is the place where good people come to rant, sulk and cry, not necessarily in that order.

You could still be right, and there could be a way to improve things.

Has she been evaluated for emotional lability, which can be reduced by Nuedexta? It may also improve some bulbar symptoms. That could relate to the switch from smiles to crying.

Does she use BiPAP? Has her breathing changed at all? Sleeping more all of a sudden could signal CO2 retention and the need to change settings. I will send you an email if you want to discuss that in more detail.

It is also possible that hospice is correct, of course. You can never go wrong by hoping for the best while preparing for the worst, and living each day as if there are no others. It goes without saying, that when she wants to be held, there is no better place for you to be.

Best,
Laurie
 

KarenNWendyn

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PALS
Diagnosis
07/2017
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OR
Sorry to have to welcome you and your family to this forum. I’m glad to hear your wife at least had a couple years of decent mobility.

Every PALS has different ideas about how to deal with this disease. Denial is a common strategy.

I send along my best wishes for your wife’s comfort and wish your family peace. You are strong .... it’s totally ok to rant, vent, sulk, cry, and even laugh here because we’re all in this together. This is a safe place to share.
 

KimT

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Joined
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Messages
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Reason
PALS
Diagnosis
08/2015
Country
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I'm so sorry. Please know that there is so much support here.

Prayers for both you and you wife along with the hope of strength.
 

Billard

New member
Joined
Feb 13, 2018
Messages
4
Reason
Loved one DX
Diagnosis
06/2015
Country
US
State
LA
Laurie,
She has been on Nuedexta since day one of DX.
As far as bipap, in Oct the replace her machine with the trilogy. They said her lung capacity was down to 15% at the Oct clinic. Since Jan she hasn't worn it with much frequency. Maybe a few hours a week.
 

KimT

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I would think that using the Trilogy, with the correct settings, would help her feel more comfortable. Can you try some different masks? Is there a reason she is not using it.
 

Ladybird59

New member
Joined
May 18, 2018
Messages
2
Reason
Loved one DX
Diagnosis
02/2016
Country
US
State
Fl
While my brother situation may be entirely different, thought I might share my experience. While he and his wife were visiting me for a week this past Feb. For 5 days he did not eat. I was deeply worried and saddened by the experience, feeling helpless. As he simply slept most of the time.. He has been unable to walk or talk , a condition that worsened over the past 4 months .... He wrote on his tablet, “ I can’t stop thinking” and cried uncontrollably.
Upon his return home, his wife went straight to his doctor with him. Apparently, he was extremely depressed which I was informed could be part of ALS, and was put on progressive dosages of antidepressant. This helped him greatly, eating well and sleeping less.

You are a strong individual and I wish comfort for you both as you find out what more can be done.
 

Billard

New member
Joined
Feb 13, 2018
Messages
4
Reason
Loved one DX
Diagnosis
06/2015
Country
US
State
LA
Sorry for not responding back sooner. It's been a rollercoaster since my last reply. Hospice started comfort care on the 22nd and started coming every day. Her numbers have been on a rapid decline and this past Thursday we were told that weeks had now turned to days. Family and friends have been coming and going, all the while I've probably started a hundred tasks that don't seem to get finished. It seems ADHD has kicked in and I can't focus on anything long enough. I pain for her, as she lays there unresponsive except for the tears that run down her cheeks as she hears a familiar voice or gets a lick from the family dog. 26 years of true soulmates, a love that most tell me they never found and envied what they saw in us, being crushed by the cruelest disease I've ever seen. I can't fathom what is going through her mind as she lays there fully aware and no ability to respond. I can only pray that the Lord gives her, myself and our son peace, comfort and understanding.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,303
Reason
Lost a loved one
Diagnosis
06/2016
Country
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MN
I can so relate to a great Love crushed and I am so sorry for what you are going through.

Wishing you peace and strength at this time.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
720
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
How would you finish a task or even thought in a crisis like this? The constant flutter of visitors and nurses is just an addition to the breaking heart. We're all here for you for what it's worth.
Sending you good thoughts!
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
552
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
Sending wishes for strength as you help your wife with the transition.
 

lgelb

Forum Supporter
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Messages
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Reason
Lost a loved one
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09/2009
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I'm very sorry, Billard. She is so very fortunate to have you all at her side. That you/your son/your dog and all the others are there, that she knows you are there, is all that counts right now.

--Laurie
 
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