Guidance Needed

[littlered]

My PALS friend has taken a turn, her husband is in the hospital with his own illness, her son is worthless and her caregiver is calling me for advice. As a background, she is not on a bi-pap, does have a feeding tube, only can move her neck and has some speech left. She is on small doses of morphine at a time each day to help with secretions and whatever else.

As of today, she is foggy headed, sleeping way more than normal and generally not feeling well. Other than continuing on morphine and keeping her comfortable, any other suggestions or recommendations?

I knew this day was approaching, so I guess we have reached the point where the CO2 is a noticeable issue.

Thank you for any advise you can throw my way so I can pass it on to the family. They have taken the "deal with it when it gets here" approach for the past almost 7 years.

 

[KarenNWendyn]

At this point, BiPAP would be indicated, if she is willing to go for it.

 

[skipper66]

I would just keep her comfortable with the morphine and ask if she could also have Ativan due to the breathing issues. Then unless she previously mentioned wanting a bi-pap I'd let nature take it's course. She doesn't sound like she is having much of a quality of life right now. I would just want her kept comfortable. Does she have Hospice?

 

[Nikki J]

Are her wishes known?

 

[littlered]

Back in November, she aspirated and ended up in the hospital. They told her that the bipap caused the aspiration. I tired to get them to try the trilogy again and get with Laurie on settings, but her husband believed the hospital so he returned the unit. She has been under hospice care for a while, so I don't think they could get one now.

I only wish they would, Karen. Thank you.

 

[littlered]

Yes, Nikki, I do believe her wishes are known. I will be going to see her husband after work. I'll have to tell him what is happening. he and I are close, like brother and sister.

Up until today, she's been quite happy watching tv all day and having regular visits from her grandson. We had quite a laugh about a few things yesterday.

As you all say on a regular basis, ALS SUCKS!

 

[lgelb]

I am very sorry.

The hospice certainly can try oxygen as a palliative measure, if the end is near.

Best,
Laurie

 

[littlered]

What other signs can I tell them to watch for? I've read about darkening urine, but what other signs are there that the body is shutting down?

Hospice is not there all the time, just when they call. The caregiver is handling the morphine. Son would just give her the whole bottle to get it over with. Sorry to mix my anger at the stupid kid (38 years old) with my worry and concern for my PALS. i have promised her that I would make sure she didn't end up in a home (son said he'd do that if his dad died first) and that her final days would be peaceful.

Thanks everyone. As some of you know, I've been on this journey with them from the beginning. I, too, would be at a loss with out this forum.

 

[KarenNWendyn]

She’s so lucky to have a friend like you.

Signs of shutting down may include:
Dark urine and less urine,
Refusing food, or tube feedings not going down,
Slipping in and out of consciousness,
Sleeping more and being more difficult to arouse,
Air hunger,
Sometimes more fluid retention (lungs, abdomen, back, extremities)

 

[affected]

So sorry to hear that Sheree is at this point, but hospice should be advising on how to keep her comfortable the best way and that is all that matters now.

So it's really whatever makes her most comfortable and if that is tv, or being talked to great.

What I found helped a lot was reducing nutrition and fluids so his body didn't have to try and do any digesting, and keeping a beautiful atmosphere. For us that was candles and music, and nice oils to do gentle facial and hand/feet massages (really gentle, it was more stroking and touching than anything).

This helped me to spend time with him without feeling like I'm just sitting there. By doing something that was nice for him it felt like I was with him and he knew it because he could feel me.

I agree if she needs O2 it should be given as we now just want her to be as comfortable as possible.

Ask about anything you need - are you spending some time there just now too?

 

[littlered]

Tillie, we are splitting our visits between the two. Son is showing his ugly side. Told her today of two assisted living facilities he was looking at for both of them. He has a baby due in three weeks and can’t be bothered. Wants to get things in place ASAP. Ed is better but also declining. Another bout of pneumonia and exhaustion. He has sacrificed himself for her She was more with it this afternoon I’m told. I’ll see them both tomorrow. Another family with lots of ugly drama. Son would be just as happy to lock the door and throw away the key. I just want to make sure our friends are safe in their final days to the best of my ability.

 

[affected]

Please send them both Tillie hugs xxx