Chapter 34 "He was part of my dream, of course - but then, I was part of his dream too!"

We had an appointment with Dave's neurologist this week.  I had a long list of questions and concerns to discuss, and we got most of them covered.  Dave will have another MRI to compare to his MRI a year ago to see if there are changes.  I'm relieved about that.  Our doctor is a little surprised there doesn't seem to have been much progression of symptoms over the last year, and she even had a note to herself to consider Alzheimer's as a possible diagnosis at the next visit.  But everything continues to indicate FTD even with out the scans that clearly show atrophy in frontal and temporal lobes.  Both Dave and I really like his neurologist.  She has a wonderful manner and is so supportive and caring.  We were disappointed to find out that she is moving out of the state this summer.  So we'll start over with a new doctor.  Ugh. 

I would say there have been subtle changes over the last year, but it's so hard to tell on a day to day basis.  Sometimes I think I hear him slurring words a little - but just a handful of times over the last couple of months.  He does more often say things like "What do you mean, the basement?"  Or repeat back some things I'll ask or say.  But again, only a handful of times.  He is definitely more reactive about change.  I suggested we put the dog leash in the drawer where he puts the bags for when he walks Bella, and he kept taking it out of the drawer and putting it on top saying that's where it goes.  He raised his voice about it, which of course made me raise my voice.  I pointed out that he opens the drawer every time he takes her for a walk, so could he please try it for a few days.  So far, that is working.  But he was very very resistant.  It's curious.  And it's painful to hear his response to questions from the doctor about what he does for enjoyment or fun - watching game shows - Family Feud, Wheel of Fortune, and a few others.  I feel I'm failing some how.

He is also losing track of more things in his memory.  Some of the things are significant events in raising our children.  I've told my children over the years when talking about marriage that a part of that relationship is there is a witness to your life - a person who knows you never put your keys in the same place, or knows which side of the bed you sleep on, or what kind of toothpaste you use.  They know if you laugh really loud or if you cry at sentimental movies.  I realize I'm losing the witness to my life.  He doesn't remember so many of the wonderful times we had when we were first married, living in a basement apartment - I know it probably doesn't sound great, but it was!  He doesn't remember the difficulties our first born had sleeping at night and how we'd hold hands in the living room as the baby cried, and I cried.  He doesn't remember many of the most important trials and tribulations we went through with our children - and he doesn't remember some of the most joyful moments we had either.  In thinking about that, it put into context for me why I often send short brief emails to one of my brothers on a regular basis - just about the weather, or a tv show, or my beautiful grandson.  It's someone to witness my life.  Sad but true.

Yes, I have many other brothers and sisters that I talk with, and I have my children.  And I am blessed to have their support and care.  But there's a little hole - no one to make a small comment to in passing; a random thought.  When I do it at home, usually the response is an irritated "What?  I didn't hear you."  Somehow writing it down and sending it through cyberspace, knowing someone will be reading it that hour or day.  I don't know.  It does something for me.  And I think my brother gets it.  He doesn't have to respond.  But he gets is.
 
My oldest son, who is 34, is very concerned about the possibility of Dave's FTD being genetic.  In fact, I think it crosses his mind at least once a day, and he's said he couldn't ever get married or have children without knowing if he has this or could pass it on.  I've looked at the Penn FTD Center website about research they have going on.  I plan to contact them - my son is interesting in participating in their familial study - part of it is genetic testing - not for everyone.  But he is certain he wants to know, and in some way wants to contribute to the research of this disease.  Ideally, I'd like for Dave to get testing to see if he has the genes that indicate it would be genetic - then all my children would know if they need to worry about it or not.  My oldest one is the only one who has mentioned it.  University of Pennsylvania is also having a caregiver conference in May that I'm going to look at attending.  I can't let this disease take me down also.  It's going to take my husband, but it's not going to get me.  I can't control its course, the financial impact, the emotional impact.  But I can try to stay on top of it.  I can find glimpses of the old Dave by looking through photos with him and prompting some memories.  I'll tell him stories of how things were and sometimes he laughs and talks about it instead of just shrugging his shoulders.  I just have to keep going.

More later, after the MRI.