PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Friday, February 13, 2015

Reply from a Reader


I saw your post regarding the Best Friends video from DailyOm.  I know you don't know me and I'm sure you have plenty of support but a book that really helped me during my mother's illness was "Making Rounds with Oscar."  I've shared it with several people suffering the terribly devastating disease that is Alzheimers.  It is a tender story about how some of us have walked the hard road of this disease.

I also read a little bit on your blog about end of life and the difficult decision to let a body shutdown and when is the quality of life gone and here's what I've learned.  After 51 years of marriage, my mother passed away last February two weeks after their anniversary. My father had cared for her in her dementia for longer than I even know. I would say the quality was probably gone the last four weeks.  The last two break my heart thinking about them even now.

This past summer, my formerly vibrant father was diagnosed and then treated for severe blockages in four vessels in his heart.  He went home twice after the surgery but he never recovered.  The third time we went home, it was on hospice.  That was late August.  I stayed with him every day.  He was chair-bound.  A once shy and very proud gentleman, he needed help with everything except eating. He never complained, was rarely cranky, and always said "thank you" for the even the smallest things.

I asked myself many times over those last months why was he suffering and where was the quality of his life.  And very near the end when I was grappling with what I couldn't possibly control, he awoke after almost a full day of unconsciousness and stretched like a sleepy little boy.  I wouldn't have missed that stretch for anything in the world...and then he ate a big breakfast. And so, though the coming days were hard, I thought to myself, "there's still quality."  Still a connection.

I am not a proponent of some of the heroic things we try to do to save the people we love or the things the medical world throws to us as treatment.  I think you have to weigh comfort over 'to what end?' but, I believe, without question, there's a plan and a path.  I think my father lived exactly the time I needed, my sister needed, our families needed, to transition us to our life without him.  He passed away on December 9th, 2014.  Tomorrow would have been Mother and Daddy's 52nd wedding anniversary.

I tell you this because I see the love in your eyes for your sweet babboo.  I don't know what it is to lose the love of your life but I know what it is to lose someone I love...two people in a very short time.  I know what it is to bear slightly more than you think you can bear.  I know what it is to be a primary caregiver and be sad and angry and exhausted and just want something so simple, it is silly.

I just wanted you to know your comment and your blog touched me.  I wish you peace on your journey and enough strength to enjoy the good moments and endure the hard ones.

I don't know what your faith is or is not but I'm going to hold a good thought for both of you and I wish you continued love on Valentine's Day and beyond.


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