Thoughts on how my PALS Is feeling?

[cbiedron]

Thank you everyone for all your valuable advice here. My husband was diagnosed in March, bulbar onset, and now needs me to do everything for him. He has a feeding tube, trilogy, cough assist, suction, hospital bed and lift. His FTD prevented him from learning how to use a communication device and he is unable to speak. I want to make him as comfortable as possible but it’s hard for me to know what he needs. For example, he likes to put a washcloth in his mouth, but I’m not sure why, and he is more sensitive to touch now. If anyone might be able to provide some insight on how he might be feeling, so I can better care for him? What kind of discomfort might he be experiencing, and what is the best way for me to help him?
Thanks in advance!

 

[lgelb]

A dry washcloth soaks up excess saliva and mucus.

A moist one (wrung out to avoid choking) provides moisture to a dry mouth/lips, that the feeding tube does not.

For communication, is he able to blink yes/no? Blink when you point to the right letter or word on a word board?

I'm very sorry that you are going through this.

--Laurie

 

[affected]

I'm so sorry - my husband also had the double whammy of bulbar onset and FTD.
We found that picture charts worked really well for basic communication - words and spelling with charts can be too complex and very slow as often their reaction time becomes delayed. Chris in the last months also would nod yes when he meant to shake for no.

You can search for picture charts, we actually made our own with photos I took. I think that helped Chris identify with the concepts.
I also had simple word charts and I had a couple of different ones. I had one that only had the kinds of things he would be wanting when he was already in bed for example. This meant it had a more limited number of choices.

Otherwise, while it might be hard, if you could take a little time to sit and try to simulate some of his situations it could help? Sitting a long time can mean becoming stiff or aching, cold or hot. You may be able to think this way a little about the kinds of things he might be experiencing to help you with choices that might go well on a picture or word chart.

Can he still spell? Alphabet charts are good for things that are not so regular, providing language has not been affected by the FTD (again in the last months this became an issue for my husband)

 

[cbiedron]

Thank you both! He has been unable to blink or wink voluntarily for a while. He does thumbs up/down but struggles with that sometimes too. I will try your suggestions, truly appreciate any and all feedback here!

 

[Fusia]

I remember reading somewhere that if a PALS can no longer blink voluntarily, they may still be able to move their eyes up/down or right/left to indicate yes/no. While I expect that could become tiring quite quickly, it could help with some basic communication when needed.

 

[affected]

My Chris would grunt - we tried one for yes two for no, but he would get that confused so I would point and he would simply make a sound. Yes and no sounded the same so it was silence for no. I do hope it helps, it is really difficult. Sometimes I would also just have to hold eye contact and he could move his head so he could kind of indicate. Hard to explain but when you know a person well small cues can become important.

 

[Bradytwin2]

The wash cloth I am guessing absorbs saliva and phlegm and therefore is not struggling with swallowing it. The other thing is it helps with drooling. Our loved ones need small adjustments with pillows and slight changes in the position of arms and legs. They need massages and gentle exercises to stretch. But more than anything they need to communicate. Call your local ALS organization and pick up a copy of the book titled “Someone I Love Has ALS.”

 

[affected]

@Bradytwin2 I just want to note that the OP's PALS has FTD and this brings a whole extra set of challenges. I do agree they need to communicate of course!

 

[cbiedron]

Thank you all so much. Does anyone have suggestions on how to make him comfortable in bed? He sleeps with a light blanket, which sometimes he manages to off in the middle of the night. So then I’m afraid he is cold. Is it better to put socks on him? How about arm and hand positioning? At this point he can hardly move and can only make sounds and I just want to be sure I’m doing everything right.

 

[lgelb]

We used (and I still have one myself) an ElectroWarmth low voltage heated mattress pad, that goes under the fitted sheet. It's very safe, you can't feel it, and he can't kick it off...they have the 38x74/80/84 sizes that you would use for a hospital bed. For pet owners, your dog or cat may suddenly find their way to the bed.

Some PALS like socks and some don't, same as people without ALS. You might check how cold his feet are when he wakes up or while sleeping if it doesn't disturb him. Acrylic socks are less likely to dent the skin. You can also buy "diabetes socks" that are wider.

I am assuming he only sleeps on his back? The small filled travel pillows like you get at Bed Bath Beyond work well as elbow/forearm support and might also be comfortable under his knees, which can lose their padding in late disease. Generally, I would try a 10-15 degree angle for his head and legs that you set using the bed control.

If he is able, when he wakes up or when he first lies down, you could try "Does anything hurt?" and then tap each joint (neck, shoulder, wrist, elbow, hip, knee, ankle, heel, toes) so he could blink yes or make a sound if so. There are many foam and positioning options for individual comfort, including pressure boots and a foam belt to keep the hips aligned.