- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
D. And I now have the privilege of staying together when I am in Seattle. The assisted living allows me to stay on an air mattress in his room and brings me trays for each meal we desire, free of charge. I am there typically every 3-5 weeks for two to four nights. The staff is wonderful, warm, welcoming. I use a car D. gave to his sister, or no car at all because it’s really close on to a lot of things. Free parking when I have the car!
A few people have observed something really smart “Brian made your mind and heart ready for Dean”. I think there is a lot of truth to that. I am unsure that much as I love him, I could have handled this grim prognosis well enough to be in a relationship with D. before Brian. Understanding what is happening paired with the attitude towards life - and death I found in loving and caring for and losing Brian is what made me feel that D. And I together was an experience not too be missed. It’s a really unique relationship and I am so happy we have this together.
D. Is doing alright. Foot sores improving due to a better regime of care, active in PT so he has stayed flexible with only a somewhat contracted left hand. Pain well under control with very minimal use of opioids, mostly Tylenol for him. His 02 saturation is good, always 96 to 100. He has had ALS since at least 2013, Dx 5/10/15. No longer walks, speech poor at best, swallows/eats but that is probably his Achilles heel, his ability declining.No peg and I know he will Not get one and probably could not now. He is also prone to CDiff, fighting attacks since January. A “mystery” infection nipped him this summer. I tend to think it was starting cellulitis from the foot sores, maybe even early septicemia. Beat that back too. His mind is 100%. He has some use of arms and hands still.
Dean lived in his apartment in San Francisco until last Fall. He drove until 2018, and worked teaching online until the Spring of 2020. Per his family, progression began to speed up significantly in 2020.
It’s funny, when we are staying together how easily I can move him around in bed, give him chair boosts, help him with things and the staff kindly does not gripe at me as long as I don’t attempt transfers which they do strictly in pairs and with the hoyer. I think of all those delightful home transfers I did with Brian. Home caregivers, you work much harder than you know! Be good to yourselves at every opportunity because make no mistake your job is long and hard!
I love this opportunity to just love D., with the occasional urinal thrown in or help dressing or moving to his side but never a commode or a transfer.
Still the artist, musician, writer and thinker. I am most fortunate to have this wonderful man in my life.
A few people have observed something really smart “Brian made your mind and heart ready for Dean”. I think there is a lot of truth to that. I am unsure that much as I love him, I could have handled this grim prognosis well enough to be in a relationship with D. before Brian. Understanding what is happening paired with the attitude towards life - and death I found in loving and caring for and losing Brian is what made me feel that D. And I together was an experience not too be missed. It’s a really unique relationship and I am so happy we have this together.
D. Is doing alright. Foot sores improving due to a better regime of care, active in PT so he has stayed flexible with only a somewhat contracted left hand. Pain well under control with very minimal use of opioids, mostly Tylenol for him. His 02 saturation is good, always 96 to 100. He has had ALS since at least 2013, Dx 5/10/15. No longer walks, speech poor at best, swallows/eats but that is probably his Achilles heel, his ability declining.No peg and I know he will Not get one and probably could not now. He is also prone to CDiff, fighting attacks since January. A “mystery” infection nipped him this summer. I tend to think it was starting cellulitis from the foot sores, maybe even early septicemia. Beat that back too. His mind is 100%. He has some use of arms and hands still.
Dean lived in his apartment in San Francisco until last Fall. He drove until 2018, and worked teaching online until the Spring of 2020. Per his family, progression began to speed up significantly in 2020.
It’s funny, when we are staying together how easily I can move him around in bed, give him chair boosts, help him with things and the staff kindly does not gripe at me as long as I don’t attempt transfers which they do strictly in pairs and with the hoyer. I think of all those delightful home transfers I did with Brian. Home caregivers, you work much harder than you know! Be good to yourselves at every opportunity because make no mistake your job is long and hard!
I love this opportunity to just love D., with the occasional urinal thrown in or help dressing or moving to his side but never a commode or a transfer.
Still the artist, musician, writer and thinker. I am most fortunate to have this wonderful man in my life.