Do we still have birthdays after we die?
Well, it has been exactly 8 months since Mr. Ed died. And it is no coincidence that I am writing this on his – or what would have been his - 86th birthday. Ironically, another significant father figure in my life passed away yesterday morning and I am writing this while on a plane to Boston to pay my final respects to him. I guess my mind is full of warm memories of great men who have graced my life. Please don’t be confused, my father, who is still alive and kicking quite hard, is perhaps one of the greatest. But alas, this blog is about Mr. Ed and Jo.
Yes, Jo is still alive and well. I mean, how exactly do you define “well” when someone has dementia? How does Alzheimer’s progress in 8 months? And does its impact change when it has already taken a loved one?
Let’s start out with Jo’s reaction to Ed’s death. When she woke up the morning Ed died, Jo seemed to know immediately that he was gone. She cried gently and seemed as lucid as she had been in this disease. She joined in the family’s mourning and was exceptionally cooperative in the upcoming days as we celebrated Ed’s life. Unfortunately, by the end of the first week Jo was asking repeatedly when Ed was coming home from “back east.” Initially, we constantly reminded her that Ed wasn’t coming home. He had in fact, died. In the next phase of Jo’s grief she began to confuse her son for her husband. She would rub his leg and take care of him just as she did with her beloved Ed. Jo got confused whenever we brought her home and didn’t pull into the garage; at one point she was even angry that her “husband” wasn’t living with her. Today, Jo still struggles with understanding where Ed is. Some moments she is perfectly clear that he is gone. Other moments, she asks when he is coming home. And still others, she confuses her son or grandson for him. Each time she is confused, we gently remind her that he died last year and is happily exploring Mars.
If you stop and think about this for a minute, this means we are all reliving Ed’s death on a nearly daily basis. What’s more is we are sending Jo into a new tailspin of grief every time we remind her that he is gone. Is this fair or healthy for any of us? Should we just play along with her and answer excitedly, “Ed will be home on Friday night! He can’t wait to see you!” I don’t know the answer. I imagine no one does. But, I believe we are all being kind and loving each time we respond to Jo, and perhaps at the end of the day that is what matters in her head and heart.
As far as Jo’s progress is concerned…..her decline has been steady and swift. Her memory seems more creative each day. I am getting married in June. Despite the fact that she has a save the date, has the date written in her calendar, has seen the video of the proposal and is told on a daily basis about the wedding; she is still hurt several times a day when she hears that we are getting married and did not tell her!
Jo’s memory of loved ones is hanging on by a thread. She clearly remembers her two children (when she is not mistaking her son for Ed), her son-in-law and me. She knows that there is a caregiver with her every day, but thinks its always someone new. When the grandchildren visit, she remembers them when they are in the room. Sadly, she is sometimes unable to recall the grandchildren and their spouses from sheer memory. It does seem like she most remembers the people she sees the most.
Physically, Jo seems to be weakening. She often wakes up late, eats breakfast and then settles in for her morning nap. She still thinks she is walking to and from the grocery store daily and preparing her own meals. In reality, on some days she is able to walk down to the corner and back and on other days she is unable to walk from her bedroom into the bathroom without support. Most days she is unaware of and does not care about her appearance. Sometimes it is a fight to get her to shower and change her clothes. When she does shower, don clean clothes and fix her hair she is as radiant as I have ever remembered her!
While it is overwhelmingly sad and difficult to watch Alzheimer’s take first Mr. Ed and now Jo slowly from us, we are hanging on to the moments of joy when we can. Jo is as loving, kind and generous as she has ever been. They say that as Alzheimer’s progresses, the patients regress in age. That is part of the reason they get confused about and don’t often recognize the loved ones in their lives. But the age regression that I see in Jo is as sweet as a newborn baby. The way her eyes light up when she realizes we are visiting her is similar to how a 6-year old’s eyes light up when their Papa comes to visit! When I drop off cookies for her, she wants me to hide them in her bedroom so she doesn’t have to share! And then she gobbles them up faster than a 6 year old. Her hugs and kisses are as precious, tight and innocent as a child’s. I guess instead of continuing to mourn her declining health, maybe it is time for us to start celebrating the fact that we get to experience Jo as most children never get to experience their parents….as a bright eyed, innocent child! I’m going to take that as a win for all of us!
And as far as saying goodbye to yet another one of my father figures this weekend; I feel fortunate to have had Padre in my life for as long as I have (25 years) and am excited to celebrate his life with his wife (Madre) and daughters (my other sisters) all weekend. It is in knowing and loving the people that have cared for (and continue to care for) us that we evolve into the people we are today. Thank you Padre and Mister for loving me and adding to my life each and every day that I have known you. And Happiest of Birthdays Mr. Ed!
