Monday, November 24, 2008


Meeting together with the therapist today, John complained that I don't tell him things. I talked about wanting him to show more empathy. When I do tell him something he asks questions and I feel pressured to have answers to his questions. I don't feel he is trying at all to imagine what it feels like, to put himself in my shoes. Ten years ago he was better at that, though it was an easier situation for him--I was dealing with issues from my childhood that didn't bring up any particular pain in him.

I talked about how painful it is to have the program I built at work at risk at the same time that I'm increasingly focused on caregiving, which doesn't involve achieving anything lasting. I said the only accomplishments that come out of caregiving are spiritual ones and there I feel so alone because he isn't interested in finding meaning in the journey we are on. I mentioned a book and he said he wanted to read it, but I'm not optimistic because he has read nothing I have given him except Grayboy's book.

I don't know if any of this is actually still possible for him or if I am doing nothing but setting myself up for disappointment.


Spouse said...

Throughout our entire walk with Lewy, GW has never wanted to talk about his disease but rather wishes to ignore that there is any problem, and to cover any errors by saying he was just trying to make a fun joke. He has ,like John, always had a problem with being organized. but ever since his diagnosis in 2000 his ability to do any at all has been gone. Scolding him will not make it come back, the only thing that can be done is to physically give assistance or find someone else who will do it. I'm not saying that living with a Lewy patient is easy, but I feel you are so worried about your own space that you cannot help him at all. I find that whenever I show any stress at all, it tends to cause GW to be fully unable to function. He has always tried so hard to disguise whatever he has trouble with, much like Dr. Grayboy mentioned several times.
I'm sorry you felt that you needed to delete my last comments, but I hope you will remember some of the advise there. Stressing about the future of this illness will only make it worse for both of you.
At this time I'm trying to give us both as many good times as possible
Traveling tomorrow 8 hours to Daughter's family for Thanksgiving -with the car packed with all the support gear to make toileting, showers etc as easy as possible. When memories fade- make new ones !!!
Hope your Thanksgiving is filled with Hope and Thanks!!!

Pam said...

Thank you for replying kindly. I hope that by being honest about my own difficult path I will get to some of the kinds of acceptance and focusing on the positive that you have found.

Anonymous said...

Hi from Australia,

I'm truly sorry to read about your husband John's LBD. I can't give you any ground breaking advice but can share some of my encounters with the beast.

I care solely for my father (another John) who has LBD. Dad doesn't discuss his feelings or emotions either. When he forgets or acts befuddled he attempts to cover it up or make a joke out of it. I think this may come from a combination of pride and fear. I realise that it's a different form of relationship daughter/father to wife/husband because that confidante element is missing but when Mum was alive (we lost Mum last yr) he did the same.
What I hate the most, and I mean hate, is the fear when he feels lost. There are lots of things about the journey that affect my life, taking him to all the different Dr's appoitments, the incontinence, my lack of freedom, not being able to see my 2 daughters as much; oh the list could go on and on but Dad still has good days, really good days and that's what makes it all so worthwhile. When things are bad my favorite word is 'dignity', it has become my mantra. This is what Dad is entitled to.
And I couldn't agree more with Spaous's comment: 'When memories fade- make new ones !!!' this week for Dad, a picnic, a stroll along the local river.
To me, I have 2 choices; make the most of things or the other day Dad was staring out into the garden and he said "I think butterflies pass through the same time each day". Dad sees the world, now, in a diferent way but they are still precious...butterfly moments.

I hope you and John have many special moments.

kind regards from Australia