New day, New problems. :(

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Dear Cheryl, your story here reminds me so much of my husband's journey. I remember when he was so stubborn and proud that he would rather eat like an animal at a trough than have me feed him. it was a very hard and sad transition for him. what type of consistence can he eat? the pureeing was going on at the same time for us and that was tough too. no peg, lots of weight loss. there was a level of acceptance that happen for my husband, that went with swallowing his pride and giving in to being cared for. not easy, but it happened because it had to and the alternative was starvation. does your husband let you help with bathing and toileting? Another big hurdle for a pals....

I agree that they have to be in control of these things even when it hurts us. it is hard, but you can only tell him how it makes you feel but in the end you have to honor their wishes.

wish this was easier....
 
Well, the update is not great...
We had a long chat this morning and I shared how I felt that we were 'wasting' valuable time by just sitting and not talking and not leaving the house and not doing anything while he can still walk and talk... he shared his feelings of helplessness, of anger or frustration. He does not want to go on like this.
In fact he wants me to cancel the appointment with the lung specialist who was going to help get him a bipap and a cough assist.
He says 'what's the point?' He is done.

I get it. I understand his anger and frustation. I get his being done. I get not wanting to live like this. He says he is not going to 'take matters into his own hands' but he just wants it to be done.

I love him. I am trying to support him as best as I can while my heart is breaking. He did say that he was impressed with my reaction to his decision to not do the bipap. He needed to to know that I support him, no matter what.

so I guess, now we just wait...

thanks for your listening ear.
Cheryl
 
Cheryl, I'm crying with you. Know how hard it is to live with their decisions when you just want them to stay with you! His response was just what you needed- knowing you will support him, whatever. Wish I could wrap my arms around you in person. This is so hard but I promise, you will find some consolation when the day comes that he is free, knowing it was what he wanted and that you stood by and loved him through it all. In the meantime, enjoy the love and time you share. Donna
 
Cheryl I'm joining in the hug, with tears of empathy for watching this take our most loved partners.

So difficult, so heart wrenching, but he has been honest at least, and I so think that maintaining your relationship by you openly supporting him is going to be huge for him now.

Does this mean he hasn't eaten anything for a couple of days now, or has he managed to eat something?
 
Oh sweetie, I'm so sorry. I too wish that I could be there to hug you. Yes, we must let them pick their own paths, but it's so hard. The thought of letting go just slays me. I'm glad that you were able to talk openly--I'm sure that it helped him to be able to open up to you. Come here with your tears--we will join in your grieving.
Becky
 
How are things going Smooch? I've been thinking of you both all the time xx
 
The comments and advice given on losses, any loss, yours or his are so spot on. I am most joyfully impressed with the amount of comfort and knowledge given by all of you, and count myself lucky to know I'll get the same great care from you all when I need it. Thank you all soooo much for sharing.
Jayne
 
I am honoured and blessed to be a part of this place with you all. Your love, empathy, concern makes this journey a little bit easier.
I look forward to my time here.
So... he went to the appointment! YUP he did. I was shocked. (but I hid that from him! )
the appointment with the pulmonologist showed us that his fvc was down by 20% from Novemeber. He is now at 82% and his fev1 is 63% (not that I have any clue what these numbers really mean..) but apparently his numbers are not low enough to put in for a bipap machine or a cough assist. But he is going to send us for a more indepth breathing test, a chest x ray, an artierial blood test and a swallowing test text week. I asked the doctor if we could argue the numbers as we know that he has fast progession and that it takes 6 weeks to get the bipap but I think he wants to wait for the results of the next tests.
Will hubby go to these next appointments? ;) who knows maybe we should take up betting on him. (kidding...)
The positives are that 1) he went on his own accord not because I guilted him into it 2) that was the first time that he has gone out of the house in over a month and he actually said it was not as tiring or bad as he had thought it would be. He says that he will go out with me more often now.. (bets again? lol)
He has been able to eat on his own most days in the past few and he also agreed to a protein shake one day. So baby steps...I'll take them.
I think he was not as ready to be 'done' as he thought he was.
He has been in better spirits and I am thankful for a few good days with him.
And, as always, I am thankful for all of you.
hugs,
Cheryl
 
I am glad things are a little better for you. Did they test his breathing lying down? That can yield different numbers often dramatically and might qualify him for bipap. Something to ask for next time if he did not have it this visit
 
Thank you so much for updating us, and with some reasonably good news!

It is possible his reaction that night when he couldn't eat was partly the sheer frustration, and at the time he genuinely felt like he couldn't go on. We should never underestimate the energy it takes PALS to use a wasted limb even for a short time, let alone that he tried and tried. He would have been exhausted as well as frustrated.

I hope for you both that he is now thinking a little more clearly and can start to see that there is still some quality that can be had. Like going out with you sometimes!

Bipap gives best effect when it is started early, so as you say if you have to wait 6 weeks after it is ordered to have it, I would want it ordered now. Many PALS begin by only using for short times during the day, and build up their usage as they adjust to using it and as their breathing declines further.

Nikki raises an excellent point about the need to test breathing when laying down as the main culprit is the diaphragm. When a PALS lays down, the diaphragm has to work so much harder and so the results are likely to be very different. This is also why many PALS start by just using bipap at night to sleep.

Let's hope you get him to these next appointments and his spirits continue to rise so you both can find some enjoyment in each day. I'm not laying any bets, tempting as it is :)
 
arrrgggghhhhh sorry Nikki, I used the e word again!

went to mod ...
 
Did they not do MIP/MEP in the office?

Are you in traditional Medicare or something else?
 
Oh, so glad that things a looking up! I'm still confused about the differing criteria for starting the bipap. Numbers or symptoms? I couldn't get the laying down test, but hubby's sleep apnea got him started on the Trilogy at night even though the daytime numbers are good. Any serious snoring going on? If so, record it an take it in with you. We were able to bypass the sleep study with the recording and the ALS diagnosis. I know things are different in Canada, but it might be worth a try.

Becky
 
You guys are the the best and yes, Tillie, I think that night was sheer frustration.
We are getting the MIP/MEP test done next week..
We are in Ontario, so I am not sure how that compares to Medicare in the states...
But yes, next week all the other tests will be done so we will have a more accurate breathing results. SO maybe by next week we can order the bipap.
Thanks guys...
Hugs, Cheryl
 
Bipap Should not take 6 weeks to get--at least here in the states it is only a matter of days if you need one, once the pulmonologist orders it. when we got ours, the respicare company delivered it the next day.
 
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