I'm in that painful transition time....

billS

 I'm in that painful transition time where my wife recognizes her dementia is getting worse and during her moments of clarity we can actually talk about her future need to be placed in memory care. She recognizes where this is headed and implores me to take care of my own health first. She told me that she loves me and had never imagined she would find a husband who would care for her so much, that we have had such a long wonderful marriage and that I should not feel guilty for placing her in memory care when the time comes to preserve my own health. These conversations bring tears to my eyes that flood back now as I type this. But it is not that time yet. We live in a beautiful rural setting in our own home surrounded by supportive neighbors and friends.

But more and more of the time she is lost in a cloud of delusions - "I'm flying home tomorrow, how should I ship my things?" (we are home), "I want to go visit my parents", (long deceased), "There was a weird guy here today saying he lives here, I'm afraid of him so can you stay here tonight?" (Weird guy is me her husband.) "I'm scared, where did everyone go! They did not even say goodbye and left me all alone!!" (no one has been here). Most heartbreaking is when she absolutely panics and breaks down trembling in fear and sobbing. It absolutely breaks my heart and when I instinctively reach out to comfort her she says "No don't touch me!" So I'm in limbo land, lucky that we still have a few lucid moments together but constantly navigating a minefield of unpredictable reactions. We are facing the reality that this is only going downhill and it is very painful for us both. Such a miserable, cruel disease. Thanks for listening.

Rick4407

My DW is at a very similar stage of this disease but lacks the moments of lucidity.  I would find those absolutely crushing.  Her delusions are a blessing as they keep her away from the painful  reality of where she is.  I completely understand of your pain.  My thought are with you.  Rick

Mint

Know this is very painful for you Bill.  Dealing with this right now with a friend that only calls me on the phone.   Makes my eyes wet sometimes too.  Take care

Joe C.

Bill, My DW has never acknowledged her disease, other than that everything you wrote sounds so familiar. The delusions have been going on for some time and it is so painful to watch. Sometimes I wish I could discuss the future with her and other times I am grateful she does not know what is coming.

Ed1937

I'm sorry for those of you dealing with this. Not sure if I could handle it. If possible, therapy might help.

anneleigh

Bill, thank you for sharing!  You sound like an amazing caregiver with support from friends and family.  So glad you have that support.  Cherish the good times and especially the beautiful rural setting you have.  Praying for you today!

ElaineD

You are my caregiver heroes.  I hope I will have the level of courage and love that is demonstrated here, as my DH progresses in his dementia.

As I posted elsewhere here today, I always remember what Winston Churchill said:

"If you're going through hell, keep going."

Winston Churchill

Regards, ElaineD

Lorita

Love that quote, Elaine.

 Bill, many of us know what you're going through.  It's very hard and you just have to take it one day at a time.  I went through it with my mother who had alz.  She had hallucinations and delusions - hard to deal with.  Thankfully, it didn't happen much with Charles.  My sister had alz. and it was fullblown with her.  I didn't live close to her so had to deal with it by phone.  Try to enjoy those lucid moments - those are the memories you'll remember.

billS

Thanks to all for your support. Today was a mixed bag, she mostly did not know who I was but at least seemed to see me as a friend so if I'm really careful not to say the wrong thing I might be able to sleep in our bed tonight instead of being banished to a sleeping bag in a spare room. Got to appreciate the small things....

On The Journey

Thanks to those of you who noted the silver lining of SOs' detachment from reality: those times can be a temporary -- or permanent -- relief for them and, sometimes, for us caregivers.