Visitation question

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jean p

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Joined
Feb 3, 2021
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Reason
CALS
Diagnosis
12/2019
Country
US
Hello all:
My brother was diagnosed with ALS in 2020 when he was 57. Sadly, he went from running a successful business to now being bedbound, unable to walk, talk, eat. We have tried many ways to communicate with him, we also set up an Eyegaze monitor and worked with an occupational therapist to set up systems. Recently several of his work colleagues, friends, relatives have expressed a strong desire to see him. In the past, when he could talk, he did not want visitors. When we ask him about this now, we are finding is hard to know exactly what he wants. What do you feel is the best way to handle this? On one hand, I feel his friends should be allowed to see him, but on the other hand, I feel my brother may want privacy and we should respect that. Any feedback would be greatly appreciated. Thank you!!
 
Can you ask your brother yes/no questions to see how he feels? Can he respond with blinking? Does he have FTD that is making it hard to know what he wants?

My husband didn't want his old friends, etc to see him. He was clear about that before the FTD made it almost impossible for him to communicate. At the very end, his children (all adults) came to see him and he seemed happy to see them. But I know he wouldn't want people to remember him as he was at the end. At his memorial service, so many people told me that they wish they had known how bad it was so they could have come to say goodbye. I never questioned my choice to not reach out and give people the chance to visit. Their visits would have been for them, not for my husband, and I was happy to honor his choice to preserve their memory of him from before ALS.

Hopefully you can find out what your husband wants.
 
Thank you for your reply and I am very sorry to hear you lost your husband. We have asked my brother to blink and have used yes/no cards to look at but his eyes just do not focus very long and it's been hard to determine what he wants. I've also thought about cognitive issues too, which do affect about 1/3 of ppl with ALS. It's very sad that my brother is not longer able to communicate, he was a person who was always in control and in charge. I agree with you and feel it would be best for his friends to remember him the way he was. I also want my brother to feel we have preserved his dignity as best we could. Thank you again and wishing you much comfort on your loss.

jean
 
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if the decision is to limit visitors, you could suggest that folks write a short letter with a pleasant reminiscence. that can be soothing for both pals and friend or relative.

you could select one person to try out a visit and see how he reacts. as an experiment.
 
On the subject of saying goodbye: what if you got each of these friends to send audio "hi, here's what's going on; thinking of you" messages? You could start with a message from the person he might care about the most.

If he appears to be interested, you could keep going. You could also ask if he's interested in "seeing" the person via video. His own camera could still be off. There are lots of options, but you get the idea.

Best,
Laurie
 
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