I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you
I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I’m not gonna miss you
I’m not gonna miss you
These are the words to a song Glen Campbell wrote before he hit the last stages of Alzheimer's. I heard it for the first time on the Academy Awards show a few weeks ago. It was up for an Oscar. I had to google it to find the lyrics, and when I read them, I cried. Silly me. But it so hit home for me with my experience with my husband's FTD. I read the lyrics to my son, and started to choke up again. It brings to heart all the things I'll never have with him again, all the things my kids won't have. And he doesn't have any sense of how this all affects us and changes our lives. I should be embracing this fact - that he won't feel guilt or shame about his condition. I know my father struggles with what we are having to do for him to keep him comfortable and take care of him; he feels guilty about still being alive, about this last chapter of his life being such a slow decline, worried he has become a burden.
My husband is doing well at this point. We are not able to get in for a second opinion until the same week as our follow -up appointment with our original surgeon. My main concern was waiting three months, but if this new neurosurgeon doesn't see anything urgent in the information he has that requires immediate intention....then maybe all IS well. Early in May, Dave will have another driver's evaluation to see if he can resume driving. I would like him to be able to drive - but I would feel most comfortable with a limited range - like to the grocery store, the senior center, church - nothing that requires highway driving on his own. We'll see. I wonder if he'll pass.
My father is dying a rather slow miserable death. That has been taking a lot of my time. Though at times it is exhausting and overwhelming, I'm glad I'm able to help. My husband, Dave, in his naïve way, commented at a meeting with my in-town siblings while we were trying to arrange coverage and care for my dad - "he needs to die so he can rest in peace and not be worrying about all this, and so all of you can rest in peace, too." The look on my sister's face when he said that was priceless! He said what I think all of us have had run through our minds at one time or another. Only Dave could say it out loud! It has been a blessing to have lots of brothers and sisters - two brothers were able to come to town and take five and six day shifts to share in the care. Two sisters here in town, and two brothers are helping - with seven of us sharing the burden, it has lightened. And the others are offering support from far away. It is tough to realize we can't do it all - that outside help is needed - that none of us are super heroes. But all together - we have done pretty well.
I don't know how long my dad has - I really did not think he would still be alive after how poorly he was doing last November and December - but he rallied! And just this past weekend, has taken a tumble after being on hold for awhile. Maybe he will rally again. I don't know. So many things we don't know - and things can turn on a dime. Expect the unexpected. It really is true. Life is full of surprises - some good - some bad - so we have to hold on to the good ones and let them carry us through the bad ones. I wouldn't mind a run of good surprises in the near future. I hold on to the dream of my little grand son to be born in July - that will start a whole new chapter in my life - add a whole new wonderful dimension. Can't wait!
