Father with late-stage ALS, seeking advice on spending valuable time and quality of life

[slorenz]

Hello, I will greatly appreciate any advice or suggestions. My father was diagnosed with ALS beginning 2021 and it has progressed where today he mainly lies down with breathing help, needs help to move around the house, cannot speak, and has difficulty breathing. I want to spend as much time with him as possible, I wanted to read a book to him that he likes, but he is too weak. We usually spend time together in the evening watching TV. I am also thinking about looking at photos from the past, but I am worried to cause more emotional stress or anxiety for him. My main question is if anyone in a similar situation found something that worked well or did not work, I realize this is not a very specific question but any general or specific advice will be very helpful.

 

[Mary2]

I am sorry to learn about your Dad. My husband has a BIPap machine for the breathing and this is very helpful. Some people are able to get morphine to help with breathing. My husband enjoys a few pictures that are current. I think if I showed him ones from 20 years ago he would get upset. I also have some current pictures taped to the wall. I have a calendar with dogs that is a good size so he sees dogs every day. I tape any get well cards to the wall.
We listen to music on an echo dot or through the tv. Here older works. We watched a Simon and Garfunkel concert from 1982 together and play The Moody Blues, Rolling Stones and so forth from the 60s through the 80s. We watch the Red Sox and the Braves. We find a tv series and watch it from the beginning. We joined PBS documentaries and have done the History of China and India which isn't too heavy....entertaining. We have also watched Sex in the wild documentaries. I can tell you about the reproduction of elephants. We zoom with the family especially his brother and he listens to the conversation.

There is an entire road you can go down with bi-pap, power wheel chair, g-tube and eye gaze. I don't know if your Dad wants to go down this road. The biggest gift you can give him is to respect his wishes. The next is to spend time with him as you are doing.

 

[lgelb]

It sounds like your dad is already on BiPAP, but if he still has breathing problems and fatigue that keeps him from enjoying listening to a book, his settings may not be the best they can be. I will message you about this.

Best,
Laurie

 

[Mary2]

Being from Wyoming he might like Yellowstone and its prequel, a name I forget. This is about a ranch, Indians and commercial real estate developers and the power struggle between them all. The plot is pretty good. There is frequent strong language and murder.
I mentioned it to a church friend and she watched it and was highly offended. I got in hot water....oops! But the show was popular and most people liked it.

 

[Firefighter58]

I would suggest reading a book to him, if he can not tell you something that he might enjoy think of something he was interested say 20 years ago, perhaps cars or biographies of people he may remember or historical events. I have had caregivers read to me and I thoroughly enjoyed it.
Al

 

[Mary2]

My husband read a biography of Winston Churchill that he enjoyed. A person who did a lot right and some things wrong so is interesting to study.

 

[slorenz]

Thank you for your reply, incidentally, we already watched it and yes, he did enjoy it.

 

[Bleue]

I’m sorry slorenz.
I lost my mom in March 2022 (diagnosed April 2021). She was a voracious reader but once she couldn’t hold her books she refused to listen to audio books. She spent her time watching her favorite television shows, streaming shows, etc.. Her favorite thing to do with me was watch our favorite TV shows together in the evenings until her bedtime Then just the act of doing her regular routine for her (washing her face, brushing her tv, putting her fave face oils and cream on her face) was great bonding time. It’s hard, tiring, sad, painful, but it’s all over before you know it and you‘ll miss it all like crazy.

 

[affected]

As well as reading to him (which can be really fun) you could listen to audio books together.
I read to my husband and at first it was great. As his breathing declined, he would close his eyes to listen and promptly fall asleep

 

[Ken15]

Something my PALS enjoyed was looking at (and reminiscing about) family photos from earlier times to the present. Our children growing up through the ages and more recently, our grand children. From earlier times, you can do this with the physical photos and with digital cameras/smart phones, you can upload photos and create collections online.

If you want to invest the money, time and effort, you could get a digital photo frame, scan in the old photos, download the newer ones and then organize everything all in one place.

Best wishes, you sound like a wonderful son.