Choices

[kitkat]

My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is not able to use the head array. There goes a little independence.

He has no use of arms, legs, and his trunk is very weak as well as his neck. Eating is a scary process as swallowing has become difficult. He does not want a PEG. He has a VC of 31%, and does not want a vent. This is all in his advance directive..

He has decided he will quit eating and drinking when he feels it is time. While it is heartbreaking, I will abide by his wishes. Our children are also honoring his wishes and not trying to talk him into something he does not want.

Does anyone have experience with their PALS not eating and drinking? Any advice?
We currently have a home health aid with him while I am at work.

Thank you so much-
Kathy

 

[KimT]

One of my close PALS friends I met in 2015 never got a PEG. She was bulbar onset but lasted until 2018 without the tube. In the end she continued to try to drink thick shakes. He died with family and hospice in her own home. She said she was ready in an e-mail a couple weeks before. She had one working finger in the end and could use a walker to get to the bathroom until about four months before she died. Her family said she did not suffer. She slipped away one day and was in that state for a couple more days, then she passed.

She did have her Trilogy on right up until she passed and her nurse did suctioning.

I have heard of other PALS who stopped eating and drinking. It's a personal choice and I think it's better done with Hospice on board or with sufficient meds that will significantly decrease air hunger and discomfort.

I'm a big supporter of increasing morphine up to the point of where there is no suffering.

 

[Nikki J]

Agree that this is best done with medication and support and advice. Google vsed. Death with dignity has a section on it.

There are Former CALS here who have had their PALS choose this. If you look at the last pages of the hold on tight thread Lenore’s husband is preparing to do this.

Discuss with him that when he is ready it is important for his comfort and yours that it be done with medication and it might take a few days to put everything in place

 

[Nuts]

You’ve already received the best advice. I will just add that this is the greatest act of love—helping him go on his terms. My husband passed in his bed in our room, and while some family members can’t go in that room now, I’m very comfortable there. It’s where i showed my love to him during his journey by caring for him. It’s where he learned that my love was every bit as fierce and yet tender as his. I feel him there and talk to him daily, and I have no doubt that he is grateful to be free of the body that finally trapped him.

 

[kitkat]

Thank you for all the good, heartfelt advice. His hospital bed is in our room, and that is where he will pass, surrounded by love.

A couple of our friends can't understand why I am "letting him" stay home & eventually pass here. Won't it bother me to be in the same room after he is gone?? I think it will be comforting. But it's hard for some to understand that this is what we both want. People mean well, I guess.

Ah well, this is when we find out who are our real friends. Those who don't question, and are there for us.

Kathy

 

[ThisPresentMoment]

Dad's hospital bed was in the living room of my parents home. The room was full of equipment that we needed. He died there on Jan. 30. It was actually amazing how quickly we got it back to a living room - within a couple days. ALS was very quick to pick up the equipment after we contacted them. Mom is making a few changes, but we don't have any regrets that he was home. It's what we all wanted.

I second the idea of increasing medication with the help of hospice when the time comes.

 

[Lkaibel]

The VSED has been going well comfort wise, with hospice on board. He is not awake at this point. This is the beginning of day six, and he last spoke the beginning of day one due to heavy medications.

 

[lgelb]

To remind you that you have options, Kathy, gradually decreasing food/drink so that the CALS' own morphine titration to comfort and BiPAP removal then leads to a very quick and peaceful passage has been preferable, for many of us, to days of supervised sedation.

It is all about what the two of you want. The gift of the death the PALS prefers is in some ways the greatest of all.

Best,
Laurie