Haunted

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,462
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.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
111
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Sounds like a great set-up when you go to Seattle! D. sounds very creative and intelligent and like a wonderful person all around! I am pleased you are spending such quality time with him!
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,725
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
I'm happy that you are so happy Lenore. Had it been reversed and D first before meeting Brian, I think you might have said the same thing about the DX and prognosis. Having been there, allowed to you love D, it would have also allowed you to love Brian in the same way that you now love D.

Hugs
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,571
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Lenore, It's been a very long time since I've checked in here and I had to go back in this thread to learn about D. Wow. Just wow. I have a fear of finding someone to spend my years with only to become a caregiver again, and here you are loving another CALS. You are amazing, and I am in awe. It's ironic that I've been running away from ALS in an attempt to heal, and maybe that is a mistake. I've been struggling as I approach the end of year three (this Thursday) and I think I needed to read your story.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,462
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
For myself, there is no avoiding ALS. It’s like once it touched me, it became a part of me. D. Showing up as he did, well in a crazy way it’s perfect because I’m not sure I could do this relationship had it not been for my experience with Brian. On the other hand, not sure I could have said no to going forward with D. under any circumstances.

D. And Brian are the two men, In my pushing 60 life that I’ve actually loved, 100% no reservations. That they both got ALS? Well, lightening striking twice, balls bouncing and all of that….

It is MUCH easier to ge in a relationship minus the caregiver role, let me be clear on that! CALS are heros, I am in a relationship with someone who happens to have ALS.

I have been so healed from Brian by my relationship with D., no explanation yet as to why, and maybe I don’t need to understand it, just by thankful for it.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,462
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Dean and I are having a commitment ceremony on Christmas Eve 39 years after we first met, with likely three masked guests in attendance. It would be a legal marriage, but in the U.S. that greatly complicates things with Medicaid and medical insurance. Seeing as it would incur about 120k in expenses annually for us to marry, we thought this the better route. Still making my at least monthly Seattle visits. I’m keeping my job, and while it would be lovely to relocate D back to his native Minneapolis the totality of circumstances makes it an extreme challenge, at best.

Anyway, here we are together going as long as we can “under the nightfall of stars”.

I think I want to end this thread and start another based my rather unique circumstances of being long distance/commuting partner to a living PALS, and also the window of a another PALS.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,521
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Congrats on the forthcoming commitment, Lenore! I know you have already made one in reality, but the ceremony will be meaningful as well.

Sure, start a new thread with whatever title seems right.

Best,
Laurie
 
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