The 109 means that I've apparently started 108 other threads. I find that hard to believe, but I'll trust the software's ability to calculate.
I took Jeff with me to Disney World in December. In March his major behavioral trouble phase hit, and he moved to an ALF, followed by 5 weeks getting meds adjusted in a geripsych unit. He's gradually gone from being one of the "ramblers" in his locked neighborhood, capable of limited conversation, to being one of the sitters. Mostly he sits and dozes. He cannot process well enough to feed himself and requires a person to assist him with every daily function.
I feel like we've cascaded through Stage 6 in less than a year. For a while, music was something we could do everyday. Tennessee Ernie Ford singing "16 Tons" on my iPhone would always get him nodding along, but we are, apparently, losing the ability to take in auditory info, just as we've lost the visual. I brought my uke in a couple days ago and played "Feelin' Groovy" for him, but I don't think I got through.
I can still lead him around (slowly, holding both hands so he doesn't fall over,) and elicit occasional smiles if he takes in something said right to his ear.
I'm reading threads by Coco and so many others who are in the middle of crisis, and can at least feel some relief that Jeff basically plummeted so quickly through that stage, finally landing at a point where he's incapable of doing much damage, that at least we didn't have to live there very long.
Emily, how are you doing? I feel like we're speeding though stage 6 ourselves with all of Rich's recent changes. I have mixed feelings about speeding through this stage because I know what comes after.
It seems like they decline quickly after a "behavioral phase". Not sure if it's the meds or just kind of a brain explosion and then they decline. You have been through so much with Jeff this year-my thoughts and prayers are with you both.
emily dearest person, I always see you as so strong and capable, I can't see deep inside for your personal pain, but on the outside you are so comforting and hopeful and sensible. Thank you for your words today, for your 16 tons of wisdom. Peace and hope in the times to come for you, Jeff, and your loved ones.
back to ps...emily you are one of the many heroes here. So many, life would be almost unbearable without the heroes, and the heroes in training.
Emily I also think of you as strong and a leader but even strong people are vulnerable and it must be heart-breaking to lead your dear Jeff by the hands. I am so sorry. That is one good thing about this site... all the members can be at different stages and see how others handle things and learn and also not be alone. Thinking of you and your children. My children are also young adults and it is hard to watch them try to deal with their dad not being their anchor any more.
That is true Grendelsma. My girls, in particular (they are 22, 24, 26,) have become very nurturing toward their dad, but sure do not have him as the warm comforter of a parent he once was.
Emily, your post just ripped at my heart. I am not sure which is harder to read, the times of crisis when we are still fighting to hold on to what was, or the accepting resignation that we have reached the point of no return.
If there is a blessing I am glad to hear that Jeff has reached a place of peace. So sad to read you can’t reach him through music though.
Lynn is late stage but still has so much laughter and happiness, engaging moments. As sad as it all is, it is better than when he was so lost to me and unable to respond. That time remains the most difficult for me, I can’t “go back there”……. if the Marinol ever stops working, and he slips back into the vegetative state, well, I can’t survive it again….
My heart goes out to you, your children and Jeff. Hoping for more moments when you can get through… ((hugs))