Poor Quality of Life with Trach/Vent

[Allie1987]

I posted here almost two years ago when my best friend of many years was diagnosed with ALS. Now we are in a very bad situation, and I would love feedback.

My friend P. had limb onset, and by this past August had lost almost all use of all four limbs. However, his quality of life was still reasonably good. He could still speak and eat, and he was still able to live at home with his partner with the help of 12 hour a day home health aides. I live about two hours away from him and for the last year have been staying with him for about 10 days every six weeks or so to help out and spend time with him.

By the end of August, his respiratory function was already very low, and he needed to be on the Bipap almost all the time, with just short breaks for eating. Then he got covid, which led to pneumonia, and everything accelerated.

Long story short, he had to make a decision about an emergency trach. (Yeah, he should have planned for this, but he didn’t. I love him dearly, but unfortunately denial is his strong suit.)

I was very worried when he made the decision to get the trach that we wouldn’t have the resources to provide him with a good quality of life afterwards, and this has proven to be the case. He now is in a nursing home, completely unable to move from the neck down and unable to speak. His partner spends as much time there as she can, as do I and another friend, but we can’t be there all the time. It is extremely hard on him not to be able to communicate with the staff well to get his needs met, and of course he has nothing to do but watch tv when no one is there with him - and can’t even change the channel for himself.

He also has a severe bed sore which gives him a lot of pain, and they won’t give him as much pain meds as he really needs (he is on oxy every 6 hours). He no longer moves from the bed at all. They do attempt some repositioning in the bed, but it is not very effective, and he is beginning to get more sores on his back.

I just feel so sad that his life has come to this, and don’t know what I can do to make things better except visit as much as I can. And the visits are really difficult for me because of his inability to speak (we mostly use letter cards) and because it is so sad to see him in this situation.

I wanted to draw on the experience of this community, because it seems like some people get trachs with better outcomes. Frankly I just feel like he is lying there waiting for the bedsores to eventually kill him, and it breaks my heart.

 

[Mary2]

Hi Allie, Seems like a sad situation for all involved. A couple of years ago a wonderful gentleman named Jimi use to post. If you put his name in the search engine his posts will come up. He had a trach and couldn't move and was very innovative. If I remember right he spent most of his time in a recliner. If I remember right he had a pretty good support system. Jimi knew devices and was able to post a pretty long message on these Forums.

My initial thoughts are is your friend on hospice? Hospice does come into a nursing home and can direct pain management..at least where I am. Comfort care may be of the most important priority at this time and that might mean more pain medication and so he might sleep more. He may be ready to do this.

Is he just on the nursing home bed or is there some type of lay to help prevent sores. In my opinion, at this point if he isn't turned off the sores, and doesn't have a good lay over the mattress the sores won't heal. Does he have GTube? The sores won't heal without adequate nutrition.

Also, I am sure you are aware that he can probably have vent removal if he desires.

You are a wonderful and faithful friend. That is not the case with some friends in these situations. I admire your steadfastness and dedication to your friend.

 

[Mary2]

Doe he have an eye gaze machine. My husband used this with his eyes very well. He could send emails, listen to audio books and search the internet.

Why isn't he getting up into his wheel chair. Does he have a wheel chair with a tilt feature? Is he able to use this okay with the trach and vent?

 

[Allie1987]

Thanks so much to you both for your thoughts! A busy few days but I will reply soon.

 

[Jimi]

I'm still alive and kicking . 24-7 living in my lift recliner . Trach for over 3 years . First things first he has to have an eye gaze system so he can effectively communicate and have some brain stimulation . If he can still can move his head he can use head tracking which is affordable . For eye gaze I use a tobii Pceye ($1250) and a surface pro 9 . for on head tracking look at my old posts . For an even cheaper eye gaze option you can pick up a used tobii 4c and use windows built in eye gaze software

 

[Mary2]

Jimi So glad you posted! Hope you are doing well!

 

[Mary2]

My husband's eye gaze machine is just sitting in my living room. I don't know if I can get into it. Probably not. Is there a way I can clean the hard drive. I don't have the poles that came with it. It is a Tobi something or other. We used a desk and not the poles.

 

[Jimi]

 

[Mary2]

Allie, Have you looked at Team Gleason's website? They work with communication devices.

 

[Narrowminded]

My DH had an eye gaze Tobi, when he was on the trach/vent. He was with that or 8 years and used the system very well, he could even change TV channels with it. All worked well except for the last couple of months. It even had an alarm he could set off if he needed someone.

As to Hospice, it depends on your state. Here in PA, they will not take on Vent patients unless it is for a death wean.

I kept DH here at home. Besides and egg crate on his mattress, they also make an air mattress that changes where the air is the fullest all of the time to keep from pressure points. I think I bought my on Amazon, but I cannot remember the correct name at the moment. Those helped as it was hard to reposition him when he was completely bend bound the last 2+years of his life. However, I made his tube feedings to make sure he was getting good nutrition, vs the canned stuff. I bathed him everyday, and used cloth pads vs the paper ones under him. They make a huge difference on comfort and keeping bed sores at bay. Then you send them through the wash. Also, he had a catheter and that kept him dry as well.

I hope something I've said here can help you. The bigger issue, is while these are great suggestions, if the home won't help, then they are not a lot of use. Keeping you in my prayers.

I also have a long thread on here during our journey.

Hugs

 

[Jeremyj76231]

If you don’t mind me asking. But what ultimately led to his death with ALS being on a ventilator for 8 years? I’m just curious because I have to choose a vent very soon.

 

[takethewatch]

I don't have any practical advice but I wanted to tell you that I felt similar after my mom made the decision to get a trach. (It was also a rushed decision---it was an emergency intubation/ventilation and she had a few days to choose and decided to get the trach.) It was SO SO hard and I worried for a long time that it was a mistake, and the "more time" that she was getting was just going to be horrible with no quality of life. It's still so hard but I think it's better now than it was at first. She and my dad have slowly figured out what works for her care and things she can do to keep herself busy and connected with the world. (The iPad with eye tracker is really helpful!) I mean, its not an amazing life by any means but it doesn't feel as awful as it did before. But it took a long time before things felt better to me, so don't give up hope that things could change. I hope that happens for your friend.

 

[Aiden]

I'm still alive and kicking . 24-7 living in my lift recliner . Trach for over 3 years . First things first he has to have an eye gaze system so he can effectively communicate and have some brain stimulation . If he can still can move his head he can use head tracking which is affordable . For eye gaze I use a tobii Pceye ($1250) and a surface pro 9 . for on head tracking look at my old posts . For an even cheaper eye gaze option you can pick up a used tobii 4c and use windows built in eye gaze software

Hi Jimi are you using the TD control software with your eye tracker please? I'm still able to talk so using voice control, but I do own an eye tracker 5 which I know can be used with several different third-party software, but I've heard TD control makes it a lot easier

Thanks!