Friday, April 17, 2015

She bravely fought an unwinnable fight: 04/30/1960 – 04/07/15



                        

I don’t have a handle on my emotions yet.  I knew this day would come once the diagnosis was made.  I knew this day was coming when we saw such drastic changes in early March, and I knew death was imminent once hospice care was involved.  I had been praying that she go quickly and comfortably, and in her last hours with me, she did seem comfortable, and she also seemed ready to let go.  I cried when I saw her after she died, but I believe these were tears of relief for her, and joy that she was now in God’s arms.  I felt a sense of calm that I left nothing unsaid to her, and while I don’t know if she heard or understood, I believe she was able to process how I felt about her, that I did the best I could to care for her, and that she had truly been a blessing in my life.  But the concept of her dying, and me being a widower is the other side of her passing that I really hadn’t spent much time thinking about and tugs at my emotions in a far less joyful way.

 

It will be a few months before we know exactly what disease Marcia had.  Clearly she had Primary Progressive Aphasia, but whether or not she had Early Onset Alzheimer’s is not so clear.  Over the last month of her life, her symptoms more closely looked like Lewy Body Dementia, and it’s possible she had both.  I will write what might be a final blog entry once have all the facts.  I believe she had Lewy Body Dementia based on the symptoms/behavior we saw, and I just don’t think it was a coincidence that she stopped eating and sleeping the weekend Riley was home from school.  To me, it seemed like a weekend our family together was the ideal time to say goodbye, and this kind of rationale thinking, and other examples I could cite, isn’t what one sees in advanced Alzheimer’s cases. We’ll never know whether she consciously stopped eating or if this was just part of the progression of her disease.  But knowing how much she loved her kids, I just think she had decided she had had enough, and was ready to go after we were all home together. 

                                                          

Doctors, nurses, health aids, etc. have told me they have not seen anything quite like Marcia’s situation, where so much change had happened in such a short period of time, and all agreed that hospice was the right decision for her.  Once under hospice care, she was taken off all medications and seemed more alert than I had seen her in weeks.  But she didn’t eat and continued to lose weight and strength.  The last four days of her life, she never left her bed and was given increasingly frequent doses of morphine to make her comfortable.  I had always expected Marcia would one day be in a memory unit of a Long Term Care facility and thought we might be there by the end of the year.  I thought she would minimally live in a LTC unit for a few years.  Never in my most pessimistic thoughts did I think I would be planning a funeral before her 55th birthday. 

 

As I reflect on Marcia’s life, she was a blessing to me and to so many others.  We will celebrate Marcia and the life she lived prior to life with aphasia and dementia.  We will celebrate the way she handled herself throughout the course of her disease.  We will be grateful that Marcia seemed to control her own fate at the end.  And being able to say goodbye, have Marcia’s sister come and see her, and several close friends tell her it was okay to let go and that they loved her is not something everyone has a chance to do before someone they love dies.  Once Marcia was told she likely had Alzheimer’s 4 years ago, she knew what was coming in the years ahead.  And she lived those years with as much grace as possible.  She never stopped trying to do as much as she could, she had very few days where she didn’t smile and laugh, and she never lost her enthusiasm for seeing friends and familiar faces.  She is the most inspirational person I’ve ever met. Though I’ve been missing the Marcia I married for some time now, today I’m missing her and the privilege I had of caring for her after all she did for her family for so many years.  And I think about her all the time.

6 comments:

  1. Beautiful tribute.

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  2. Marcia is now in good hands, happy and free from suffering. From your story, I 'm sure she will never forget you. She left an amazing memory not only to you and her family but also to those who took care of her in long term care facility.Make her your inspiration to live beautifully everyday. Wish you all the best Mike.

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  3. I wrote a long comment, and I lost it when I changed the 'comment as" tab. Now I need to log off to go to work. Will be back later ... In the meantime just want to say that I a praying for you and your family.

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  4. My deepest condolences. Thank you for sharing your and Marcia's journey.

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  5. I just read Marcia's story and I am very sorry about your loss.What was the biggest struggle when dealing with Marcia? Do you have advice for others dealing with a loved one that is suffering from Alzheimer's? This blog was very eye opening to seeing what Alzheimer's is like and what it can do to someone.

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    1. There were many. Seeing Marcia slowly die was tremendously difficult. The biggest struggle was taking care of her, trying to be two parents to my kids and work full time - trying to balance it all. Most important advice: take things one day at a time, prioritize and do the most important things. Let everything else go. And remember that "it's the disease", not the person. Care for them because they deserve it.

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