Dad refusing to see more doctors

[Jdeanda]

Good Morning, my fellow caregivers. It has been one hell of a month so far and its only the 9th. We went to an ALS clinic in SA and got alot of information that was real helpful, but my dad already said he doesn't want to ever go again. That he knows what's going to happen and doesn't need anyone telling him anything. I must say he has declined pretty rapidly. We've had to take him to the urgent care the other night because of severe constipation. My dad is so exhausted. His voice is just about gone and he's twitching more in his hands and feet. He can still get around but not for long because he gets SOB. He cried to me last night that all he ever asked for in life was when it was his time to go, all he wanted was to go quick and not suffer or have us suffer. that broke me into pieces. He also said he really does not want to see anymore drs that there isn't any point. Are we able to do that? just let him be and not see anymore drs?

 

[affected]

I would strongly encourage dad to see his regular doctor and discuss his wishes and he can be referred to hospice.
At the end of the day it is his choice, and I think we all know what we can cope with. A trusted doctor he knows (the clinic may have been overwhelming for him) and hospice who deal with end of life options all the time may really help him put perspective on what he can make best choices on.
I would let him know he is loved and that you will advocate for his choices, and want him to make the most informed choices.

I'm so sorry, none of us can imagine what our PALS are truly going through, and breathing losses must be terrifying.

 

[lgelb]

I know he has a BiPAP -- is he still not using it much? That should address SOB, which could be feeding his depression and hopelessness. It's hard to look ahead if you feel smothered (retaining CO2) or hungry for more air.

Of course, it's totally his choice not to see more docs. My husband stopped going to clinic nearly 2y before his death, and he's not the only one. But I would really try to get him on the BiPAP more even as a comfort measure. If it takes a new mask, new settings (lmk if I can help), or encouragement, it is probably worth it, if he wants to go on even for a short time.

Hospice and/or starting codeine or morphine should be his choices as well. You don't need to be on hospice (and not all agencies are created equal) or go to clinic to either fast forward to the end and wait for nature, or give nature a little help if/as that provides the most comfort. Any doc, including his PCP, can write these drugs. Let us know what kind of support you need.

Best,
Laurie

 

[vltsra]

My PALS has told me he doesn't want to go to clinic any longer, they can't do anything for him. We've used his PCP for various needs and they've sent a visiting nurse as he is basically homebound now.

It's my understanding that morphine can help with SOB if your dad doesn't want to use the bipap. We were referred to palliative care a while ago and I asked them for a prescription. It sounds like your dad has a more rapid progression than my PALS so perhaps hospice is an option, but if he is reluctant to call hospice palliative care could be an option. Their role is to help with comfort.

 

[Jlynn]

I had to jump in here as my brother, after 2 trips to clinic (2 hours away) firmly decided he didn’t want to go again. First off the ride was long (2 hours each way) and uncomfortable and second he said “ I don’t need anyone to tell me my progression. I know exactly what’s happening”. He saw others more advanced than he at the time and it terrified him. He never did a feeding tube or bi-pap. He decided to let nature take its course. I will say though that he would have never gotten through the air hunger without the morphine and even with at times things got pretty scary. We as CALS have to respect their wishes even if we ourselves wish their choice were different. I (in my mind) selfishly just wanted him for as long as I could have him no matter what. I wish you luck in this journey. You are so in the right place here. The people here are my heroes and mean the world to me.

 

[affected]

We also only went to clinic twice - first for diagnosis. Also for us it was quite a trip and we found it worked better for us to use local health professionals for the assistance we needed when we needed it. There are no right or wrong paths with this disease.
How are you and dad doing now @Jdeanda ?

 

[Jdeanda]

Unfortunately, I don't have any good news to report. On Thursday evening my dad was severely SOB. We called the ambulance to take him in. His blood pressure was severely low also. He was put into ICU where it was found that he developed an infection that spread into his blood stream and caused home to become septic. They put a central line in to pump antibiotics. On Friday he wanted to leave. He was so uncomfortable and kept asking to please let him die. We talked him into staying one more night because the infection was so severe, and he needed those antibiotics. We brought him on Saturday with hospice care. Before that his blood pressure was starting to normalize and the infection was taking well to the antibiotics. But now we are just crushing them and giving him through PEG tube. Saturday he was really angry because now he lost his ability to talk completely, he can't walk he can't hold his head up and is losing ability in his hands. The only thing he keeps on writing is to let him die. That he loves us, but he doesn't want to be this way. Hospice came over and left us morphine, lorazepam and some other meds. His back his hurting a lot. We decided to give him a small dose of morphine to start out with. Right now, his feet are super cold and purple. He does have a DNR in place. We just don't know what to do or is what we are doing right?

 

[Nikki J]

I am sorry. I know this is excruciatingly painful. You are doing the right thing to follow his wishes and to try to alleviate suffering. I think as well as ALS he has pancreatic cancer? It may well take more than a small dose of morphine to relieve his discomfort. Remember that treating his pain and suffering is his wish and probably the last gift you can give. Please lean on hospice for support. They have walked this path with others before

 

[affected]

I'm so sorry. I would definitely lean heavily on hospice. My palliative care team were so supportive of me as I took my husband through his final days at home. We used lots of morphine and it was very peaceful. If you work closely with them, you can make your fathers end a lot more comfortable as he now has a serious acute condition as well.
Don't worry about cold purple feet, just keep them really warm, his breathing is very poor so that is the cause.
Giving him as much pain relief now, emotional and physical is really your biggest priority.

 

[lgelb]

I agree -- this is no time to measure morphine. It's about him. He has made his wishes clear and understandably. Try to look inside yourself and find a way to accept them, talk to him, make your peace, and then in full awareness of the great gift that you are able to give, let/help him go. Long goodbyes have nothing to recommend them, but a peaceful death with dignity will sustain you past your loss the whole way through, and enable his memory to be about the joys you shared. You can do this for him, and ultimately, also for yourself.

Best,
Laurie

 

[lgelb]

Memorial thread is here.