Old 02-10-2018, 10:54 PM #1 (permalink)
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Default Need some advice and a bit of a ramble

It's been a long time since I last posted. My PALS is still hanging in, defying all predictions. It's sometimes hard to believe it's been over 5 years.

He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I suction him, I'm getting less that a half teaspoon at a time. He's constantly scraping his tongue with his teeth to try and get rid of something no one can see.

I'm wondering if this is more the muscles in his throat and tongue are weak enough that they feel differently. He has obstructive sleep apnea so there was muscle weakness even before ALS.

I'm asking because it will mean a different approach to try making him more comfortable.

He has recently been assessed as palliative rather than "palliative" so he's getting something to dry his saliva. It helps, but he still feels like he is choking. Any thoughts?

Now for the ramble.

I am so tired. I didn't know it was possible to be this tired and still function. And sad and frustrated and scared and lost, well, I'm sure you get the picture.

It seems like it's been a free fall since the holidays. Nothing seems to make him comfortable or happy anymore.

i know that I should be grateful that we had so much more time together than we thought, but, I'm not ready for this next part. I can't seem to find grateful anywhere.

i've never really thought of him as sick until now. Everything was just our new "normal". This is different. it feels like I really am going to have to say goodbye this time. We're not going to continue to beat the odds.

We'll be celebrating 20 years together on Wednesday. Yes, we met on Valentine's Day. The thought that this will be the last one we have together is heartbreaking.

Every conversation seems to be about him dying, I've been on the edge of tears for weeks. Can't seem to get my feet back underneath me and just make the most of what time we have left. It feels like all I have left is this deep in the bone sadness.

We normally watch movies on Saturdays. I set up a projector in the auditorium, make hot chocolate or tea and we have the evening to ourselves. He wasn't up to it tonight, I can't help but wonder if this is one more last time.

I guess only time will tell.

Paul

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--o00o--
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Old 02-10-2018, 11:16 PM #2 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul,

You are a prince indeed.

It is hard to say about the feeling of choking as so many muscles can play in -- swallowing, breathing, processing saliva, mucus, incoming air.

What happens if you don't suction as much? That can create dryness/irritation on its own.

Is he getting enough humidification?

Some of this may be spasms and tension, so calm, music, holding his hand can be good.

The abyss between enjoying as much you can of what you have and planning the march (or slide) at the end never narrows... I wish I could tell you that it would, but probably not till the end.

What you were as a couple, at root you still are -- make sure he goes out knowing you know that, and that is there in the comfort that you try, however imperfectly, as all of us have done, to provide.

Best,
Laurie
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Old 02-10-2018, 11:32 PM #3 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul,

You are free to ramble and unload as much as you need to. I am a caregiver to someone who is not a blood relation and still can't accept how much this diagnosis sucks. I dont pretend to know what you and your partner are going through but I hope you know there are so many people here for support. I so wish there was more I could give. God bless....
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Old 02-11-2018, 03:23 AM #4 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul a lot of PALS with bulbar issues report some quite amazing sensations that seem to be 'phantom'. I haven't seen a lot of this reported here, but in one of the CALS groups I belong to it does get reported at times and then other CALS chime in and it's quite amazing.

I know that in the early stages before diagnosis my Chris would constantly say the inside of his mouth was swollen and that he could feel it. I would check and every kind of doctor and dentist would check and say it wasn't so. He would become furious that they were all idiots because he could feel it.

It was some time after diagnosis that I realised that it was actually muscle weakness - it made the insides of his mouth change, and to him it felt like swelling.

But others report feeling like there is an object in the mouth and they can become obsessive about some of the feelings. Some are quite bizarre and some are more like you report of feeling a need to be suctioned when there seems to be little there. Of course if swallowing is an issue, then even a small amount of saliva will feel like a life-threatening issues. The feeling the need to be suctioned is valid for them.

So to give palliative care now then yes, drying the saliva and probably giving meds to treat anxiety will be important for him to remain comfortable. You of course will have to cope without the benefit of the meds.

Keeping him comfortable is probably what you need to come to terms with as being what you can focus on. Some CALS report end stages as fairly traumatic, but if you can focus on your PALS and his needs and his comfort and your ability to provide that, then not only can the end stages be peaceful, but you will have that afterwards. I know what you wanted was your PALS, but we don't get that choice, we just get to choose how much comfort and dignity we can give the one we love.

It sucks, it's wrong, it's a rip off, but it is what it is and you have been an amazing partner so far, and we will have your back while you go the extra mile and give your PALS what he deserves. Hugs to you, I know how awful this is.
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Old 02-11-2018, 07:18 AM #5 (permalink)
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Default Re: Need some advice and a bit of a ramble

Quote:
Originally Posted by pdcraig View Post
It's been a long time since I last posted. My PALS is still hanging in, defying all predictions. It's sometimes hard to believe it's been over 5 years.

He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I suction him, I'm getting less that a half teaspoon at a time. He's constantly scraping his tongue with his teeth to try and get rid of something no one can see.

I'm wondering if this is more the muscles in his throat and tongue are weak enough that they feel differently. He has obstructive sleep apnea so there was muscle weakness even before ALS.

I'm asking because it will mean a different approach to try making him more comfortable.

He has recently been assessed as palliative rather than "palliative" so he's getting something to dry his saliva. It helps, but he still feels like he is choking. Any thoughts?

Now for the ramble.

I am so tired. I didn't know it was possible to be this tired and still function. And sad and frustrated and scared and lost, well, I'm sure you get the picture.

It seems like it's been a free fall since the holidays. Nothing seems to make him comfortable or happy anymore.

i know that I should be grateful that we had so much more time together than we thought, but, I'm not ready for this next part. I can't seem to find grateful anywhere.

i've never really thought of him as sick until now. Everything was just our new "normal". This is different. it feels like I really am going to have to say goodbye this time. We're not going to continue to beat the odds.

We'll be celebrating 20 years together on Wednesday. Yes, we met on Valentine's Day. The thought that this will be the last one we have together is heartbreaking.

Every conversation seems to be about him dying, I've been on the edge of tears for weeks. Can't seem to get my feet back underneath me and just make the most of what time we have left. It feels like all I have left is this deep in the bone sadness.

We normally watch movies on Saturdays. I set up a projector in the auditorium, make hot chocolate or tea and we have the evening to ourselves. He wasn't up to it tonight, I can't help but wonder if this is one more last time.

I guess only time will tell.

Paul

Prince of Persistance

--o00o--
Not much of a ramble but you feel what I guess most of us PALS feel. I certainly feel the is this the last Thanksgiving, Christmas etc.. My wife was diagnosed in April 2016 without rambling it appears to me that the beast is taking away her control much quicker these day. I still work full time and can't describe the guilt I feel knowing that every day a little more of her is slipping away. We are married 18 years this July. Well I have just notified my job that I am taking a leave of absence to care for my wife full time. The days that are left are what matters most to both of us. At the very beginning we learned and accepted that the majority of PALS only survive 2-5 years so if you have had 5 years as a cals god bless you and cherish every moment you are together. There is nothing we can due but hope and share with others the road we have traveled. I don't know if I ever will be at peace with losing my wife when it happens, the mere thinking of it makes my eyes swell up with tears. Good luck in your journey.
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Old 02-11-2018, 09:12 AM #6 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul I am sending huge hugs. Know tha I am holding your hand across the miles. Days with our PALS never seem to get easier. Remind him daily how much you still love him and that ALS has not changed that and won’t ever. Assure hi you will be there for him every step of the way.

While Brian has a trach and for him suctioning is Very invasive, it can irritate and cause the need for more. We too have experienced times where he wants almost continuous but there is nothing there. I have found, if I can give him something for anxiety, it really does tend to help.

You are in my thoughts and prayers as you go through what may be lasts of many things. Then again, he may get thru this rough patch and rally a bit. But not matter I’m here for you as are the rest of us here.

Oh and Happy Anniversay a few days early.

Hugs,

Sue
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Old 02-12-2018, 05:50 AM #7 (permalink)
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Default Re: Need some advice and a bit of a ramble

Welcome back, Paul.
Love.
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Old 02-12-2018, 06:31 AM #8 (permalink)
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Default Re: Need some advice and a bit of a ramble

Hugs Paul! I know just how you feel. Make him as comfortable as possible. You are a great CALS!
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Old 02-15-2018, 03:07 PM #9 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul how are you doing?
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Old 02-15-2018, 04:40 PM #10 (permalink)
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Default Re: Need some advice and a bit of a ramble

Paul I am so sorry for your suffering. I can’t begin to imagine how this feels at this point in my mom’s progression. To have such an amazing partner in you must be of great comfort to your PALS. My heart goes out to you and your partner. May you both be surrounded with peace and love.
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Old 02-15-2018, 09:35 PM #11 (permalink)
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Hugs Paul, just hugs.
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Old 02-16-2018, 10:22 AM #12 (permalink)
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Default Re: Need some advice and a bit of a ramble

Prince Paul, I wish I had the right words. The shift from enjoying our normal and now knowing how to make life livable--I understand what you are saying. I wish I could take your pain away. It seems we could fuel the world if we could convert our pain and fear and suffering...

Big hugs, my friend. Your guy is lucky to have you, and that you persist at this point is testament to the man that you are.

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Old 02-19-2018, 12:38 PM #13 (permalink)
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Default Re: Need some advice and a bit of a ramble

Hi Laurie. thank you for your thoughts

I don't suction him very often, more rinsing his mouth with water so I don't think it's irritation from that. He's been doing pretty well on the scopolamine but the choking persists. I never thought of spasms. Given what has been happening lately, I think that might be a big part of the problem.

Lots of humidification, he has a stand alone humidifier and one on his bipap so we're good there.

His anxiety levels have been high and that makes everything worse, so there has been lots of hand holding to try and keep him settled.
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Old 02-19-2018, 12:41 PM #14 (permalink)
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Thank you Christine, knowing I have a place to come where people know exactly what I'm going through and are so supportive means a lot,
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Default Re: Need some advice and a bit of a ramble

Hi Tillie,

Given how the last few days have gone, I'm pretty sure what you describe is what is happening with him. The muscle weakness feels different so he thinks it means something is there that needs to be removed. We spent the better part of 3 hours with him continuously rinsing his mouth to try and clear whatever it is he feels is there.
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