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vltsra

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We had a video visit with the ALS Clinic 2 weeks ago. There were a number of things that came out of that visit that we are now dealing with.

First, and probably most critical, was the doctor's concern about a feeding tube. He told us he wanted to see us go forward with a feeding tube within the next month or two. My PALS has been resistant to admitting he needs anything like this at this point. He is still eating by mouth, but is starting to have difficulty swallowing pills (I crush them and give them to him with applesauce). His first question of the doctor was "can they take it out when I get well." Last night he told me he doesn't want the tube. I don't think he really doesn't want the tube, I think he doesn't want to think about it. Meanwhile he was trying to drink his Leap2BFit yesterday and having difficulty. I explained to him that I think it is important for him and that refusing the tube is a decision that he can make, but he needs to understand the consequences of that decision and not just make it because he doesn't want to deal with it. He then nodded and said that his cousin, who had oral cancer, had a feeding tube.

Second, he had a video visit with the pulmonologist after the clinic visit. The pulmonologist put his bipap settings up but he was uncomfortable with the high settings. We discussed it with him and he agreed that as long as my PALS is comfortable and feels that he is getting enough support that what we are doing is fine. Then he brought up the trach decision. My PALS has also been avoiding discussing this. After the call he broke down a little. He hasn't wanted to face the nature of his illness.

I am very concerned about his respiratory weakness and want to do the feeding tube as soon as possible. I know it will be difficult for him but I think it is for his benefit. I'm just waiting for the team to call me to set up the appointment.

Then on Friday his caregiver was bathing him and said she noticed a raw spot on his tailbone. I'm worried about bedsores given his lack of mobility. He has been sleeping in his lift chair and not really able to move much; I asked him to sleep in the bed on Friday night which he did but told me the chair is more comfortable. I washed the area and put some antiseptic cream on it but don't know if that's going to help.

Anyway, last March his progression seemed to speed up, and I feel like I am in another stage like that now. His speech is very muddled and within the past month he needs to be spoon fed more often than not. I am now brushing his teeth for him and he struggles more when we don't have the bipap on (such as during meals or bathing). He does have a sip mode but has been resistant to use it. I'm also concerned about his ability to communicate; talking has always been a big joy for him. As the previous caregiver said, he "talked her ear off". He doesn't learn new skills easily so I worry about him learning an assistive communication device. Meanwhile he is still talking a lot but is so much harder to understand. I know I should take one day at a time...but that's easier said than done.

V
 

affected

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Those are a lot of things to be bubbling along without truly being given attention, I can feel your concern, and I know how I felt when Chris would not attend to these kinds of things. We were different, but I remember how it felt for me, which is similar.

That pressure sore is truly a worry as he needs to be repositioned every couple of hours, and it needs to be dressed regularly and kept moist with a dressing over it. Did you know one of the big factors in healing these is good nutrition and importantly high levels of hydration? You may find as his swallowing worsens he may take in less fluids and these things are all going to compound.
Good oxygenation of the area is important too, so if his breathing is declining his circulation to this area may be more compromised again.

Gentle massage around, not on the actual wound when cleaning and dressing. If necrotic tissue begins to develop you will need it removed by debriding.

I'm so sorry you are facing lots of things that make one day at a time hard as it feels like you have several days hitting you every day.

The loss of speech is huge, and if he has not yet learned to use any technology it will be even more difficult now. You may need to consider how you will all be able to use alphabet, word and picture charts. The saddest thing about these is they limit speech down to daily needs, rather than enjoying the art of talking.

The feeding tube and trach I know are, in a way, more immediate, but I'd hate to see that sore develop into a deep ulcer and they can so surprisingly fast when the body is compromised. It could see him in bed being turned side to side until it heals.

It is so difficult when you can't have a truly honest discussion about what is going on because of this denial and the release of emotions such a discussion cause. Much love to you V, this path is the pits xxxx
 

Nuts

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V, as Tillie said, that's a lot to deal with in the face of his denial. I'm so sorry for where you find yourselves. '

Surprisingly, the sore worries me the most also. Once they start they are very difficult to deal with, and since nutrition and circulation are so important, he can wind up with multiple wounds in no time. Dealing with them and the feeding tube and trach all at the same time could be quite overwhelming. Please consult his medical team about the wound. We used the thickest diaper ointment we could buy and special wound dressings to protect them. Even with an alternating air, lateral rotation mattress they were a serious challenge.

I can only try to imagine what it would be like to deal with his denial. I don't want to. Has he shown any signs of cognitive decline, or is this strictly emotional? Having been through the whole rollercoaster, I would never allow a person who was unable to understand what's going on to be put on a ventilator. If he is still completely present, be sure that the two of you have a firm understanding of his wishes before he is trached and vented.

Again, my heart is with you. Keep venting. It helps
love,
Beckhy
 

lgelb

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I'm very sorry, V. I had a feeling, as I'm sure you did much more, that his denial would have to take a back seat at some point. If that is beginning to erode, he and you will want to take stock of what he wants for the rest of his life. It is the hardest, but also most necessary thing, to avoid the temptation to prescribe; you can only present information and scenarios in bite-sized morsels. And you may want to look at/address what makes the bed less comfortable than the chair. A new pillow, overlay or mattress can do wonders.

Best,
Laurie
 

vltsra

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Thank you, Tillie, Becky, and Laurie for your support. Today I've been dealing with a beeping hoyer lift (hopefully will be repaired today), along with a faucet repair and speech therapy appointments for my PALS. He will need to go in to the office to do the swallow test. When I told him I was setting it up he looked at me as if to say he doesn't want to do it. I told him we need to do these things to move forward in life.

Yesterday I went to the bank to transfer some money from one of his accounts to another. Of course, it's never as easy as it should be...when I came home he told me just to leave it in place, "I'm not dying yet". I used your suggestion, Laurie, to explain that while I know he is doing ok now, he could be sitting out in the cul de sac and get hit by a FedEx truck tomorrow, and he needs to think about it that way, at which point he agreed.

His denial is completely emotional. He is not showing signs of FTD in my opinion. While I don't always agree with his decision making process (he can't get rid of things, you should see the garage), he is still capable of making decisions. We discussed the trach decision after the visit with the pulmonologist and he said he does not want a trach and vent because it involved too much suffering on all sides. The way his illness is progressing I have to agree. He is becoming more and more disabled and unable to do things he enjoys. Loss of movement and loss of speech are huge for him. Anyway I have also requested an appointment with palliative care. I think that may help him and will help me as well.

We have a video appointment with his PCP this afternoon and I have it on my hot list to discuss the bedsore and what to do about it. We'll see how to proceed from here.

Thanks for your encouragement. It helps to hear from those who have traveled this road before me.

V
 

ReginaS

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V,
I remember at some point you (as did many others!) wrote something very encouraging to me. Much luck with all of this. I admire your strength and perseverance. It's hard when one thing after the other falls away. I'll be thinking of you. All the best!!
 

affected

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That's all great progress V, you got a lot done!

The big thing with FTD is that you know it, even though the PALS doesn't. It is about patterns of behaviour that have changed, the personality itself is different. That is very different to being in denial about having this (or any) disease.

However changes in cognition are very common with ALS as well, without actual dementia.

In the end it doesn't always matter whether they are happening or not, technically.

I am so impressed that you achieved this much in a day. Inching forwards is good! I hope you can get palliative care involved, I have a feeling it will give you a lot of support.
 

vltsra

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So we just finished a video consult on the feeding tube. Because my PALS' breathing is so compromised, they will not do the procedure under sedation and he will need to tolerate at least a reclined angle. I think that will be OK for him. The NP described the procedure to us. Of course, my PALS is very reluctant to proceed. He was complaining bitterly after the call about ALS in general, tells me again that I need to "believe" that he will get well.

We had a swallow test scheduled until we learned he will need a COVID19 test first. I had that scheduled but now he says he doesn't want to do two of them (one before the swallow test and another before the feeding tube). So we are going to table it for now and discuss it this weekend.

He says the bedsore is feeling better. Thank heaven for our daily caregiver, she has been working on cleaning it and caring for it, and it looks like it is healing.

I know he doesn't want to do the feeding tube procedure but as I've told him before, that needs to be a conscious choice and not just an "I don't want to deal with it" choice. Yes it is unpleasant. Hopefully we'll get there. He has never been stoic about his physical ailments.

V
 

lgelb

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I'm sorry that the denial continues, V, but glad the bedsore is better!

If he is getting a feeding tube, I don't see the point of the swallowing test.
 

affected

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I totally agree - give him the win too if that helps him. If he agrees to the feeding tube, the swallow test isn't an issue. If you can do it well though it may help him agree to the tube.
Step at a time.

Great news on that pressure sore too - gold star and keep it up! :)
 
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