The Last Phase of the Caregiver's Journey...
First of all, thank you to those of you who have offered advice, support, and information as I cared for my husband for five and a half years. He had two strokes, a hip replacement, was diagnosed with Parkinson's and Lewy Body Dementia. Our goal was to keep him comfortable and safe at home. He only wanted to be with me.
As his diseases progressed, I did hire a care assistant for the past 19 months so that I could go to town to get his medicine and groceries. Our care assistant was in our home for 18 hours/week; she was wonderful. She was always in good spirits and brought fun to our home, especially when I was too tired to be much fun.
My husband lost his battle on October 9. He had been placed on Hospice on September 27th and was given 6 months to live. Every hospice visit reduced his time with us by several months. It was a difficult roller coaster; he only lasted 12 days.
Now that his Celebration of A Great Life is complete, I still face the mountains of paperwork that must be completed. It is tough. I am untethered — lost. I struggle to understand what all of the forms are even asking of me. I feel as if I am in a fog, it is hard to know where to turn for help. I feel totally unprepared for this phase of our journey, even though we had worked to put "everything" into place before we retired.
Though I tried to visualize living in our home alone (which is in a very rural area with no other homes in sight, and 50 miles from a town of any size), and I tried to visualize his last breath and being taken from our home — I didn't even come close to imagining the emotional pain of his last days and breath, nor the quiet space I now reside in.
I am so grateful for the 30 years that we had together, though it wasn't long enough. I am grateful for the steadfast love that he gave me, and for the strength that he brought to our relationship. I am grateful that I was able to keep my promise to keep him at home as long as I was physically and mentally able. I am grateful that he always knew me.
This Thanksgiving, I shall be grateful for all that he brought to my life. He was an amazing, accomplished man and we always chose to love each other in all situations. I sometimes wondered what made him choose me.
Again, thank you to Mayo and to the mentors here, as well as others walking journeys like ours, for all of the support over these last few years.