Cuba Can Wait — Dementia Doesn’t
No, I have not forgetten about my goal to tell you stories of Cuba for 30 days, I guess they may not be 30-days consecutively, but it will be an adventure told over 30-days. You see, life takes precedence, no matter what. Lately, I have had to shift my own life to help my aging father with dementia. Of course, no one ever wishes for dementia when they get older, he is 77, but the odds are pretty high that someone in your family will struggle with it, if not yourself. So yes, Dad, Cuba Can Wait.
The scary part about helping my father is that I have had to learn everything about him, in such a short amount of time, because he needed help yesterday, so to speak. Banking access, bill habits, food habits, bathing habits, normal every day functioning habits. I had to work closely with my sister to help him and the two of us haven’t worked together on a project since we were kids, so managing his life became a real struggle for both of us. She has a family of 5, plus a dog and full time job as a teacher with students. I have a family of 4, my spouse and 2 kitties, and 1 recently diagnosed with cancer, a freelance job, and a 7-piece Soulful Rock Band, Sweet Little Bloodhound, but maybe you know that already. So yes, Everyone and Everything, Cuba Can Wait.
One thing that I have learned as I get older is that I am a caretaker. I jump in and help those in need, yet I can forget to take care of myself and my life in the process, early signs of dementia? Who knows, perhaps! That’s reality, caring for our father has brought up many different emotions for both my sister and I, but I can only speak to my own. Sometimes I think, is this going to be me? Will I suffer with dementia, will I forget to bathe, forget to go to the bathroom, forget if I spoke with someone on the phone today? Will I forget people’s faces in pictures, will I forget how to get home from the store, will I forget where I am? This could be me in the future. So yes, Dementia, Cuba Can Wait.
The other side of watching him go through this is that every time I see him, there is actually less and less of him there. It has become more and more of a struggle to do simple tasks or to even get him out of the house to the doctors. Allow 3 hours and know that you will still be late, so fake the time by an hour. Yet, if you asked my father if he still drives, he says “yes,” a scary thought, but his car is not working at the moment, so that is not possible. This is how we have managed that situation. We are both long distance to my father, 5 hours from NY and 2 hours from MA, so we have to plan visits to be efficient and know that when you get there the plan could be blown to hell because you just drove 5 hours to get him to the Urologist and you ended up being 12 mins late to the appointment with a 2 hour lead time and they wouldn’t see him. Plan so you can get the most done in the shortest amount of time. So yes, Father Time, Cuba Can Wait.
When you finally get around to figuring out the next steps for someone with dementia, you are faced with all the planning that the individual did ahead of time. Dad had nothing planned, no Healthcare Proxy, no Power of Attorney, no Will, no thoughts about what happens if…? Therefore, trying to get dad on track has proven to be a challenge and a lot of running around to town offices for deeds, marriage and death certificates, the VA for benefit information, talking to all the aides and helpers of my dad, and basically making a plan on the fly of how to move forward. Dad has always said, “I never want to be a burden to my daughters or to have my daughters involved!” Reality check if someone actually says this out loud, this is your window to talk about “end of life care,” my dad has said this for years, yet he never planned otherwise. There are other complications related to my dad’s situation, but if you are reading this and saying to yourself, “I don’t want to burden my ________ (fill in the blank)” the best thing you can do is to have your thoughts, your plans, your roadmap for the rest of your life available to your caretaker, because let’s face it, we are all going to need a caretaker when we get older. If you are lucky enough, it will be a spouse or a family member, if not you might actually have to “rely on the kindness of strangers.”1 Be prepared and be thoughtful and be kind to your loved ones, planning your end of life, death, and dementia plans are a must, this is the only way to assure that you will have your wishes carried out and you will be less of a burden on your caretakers. So yes, Death, Cuba Can Wait.
They say things happen in threes, so my dad has been slowly deteriorating over the last 2+ years and now my kitty has terminal cancer, I don’t look forward to the third, but I tend to believe in the cycle of life and the joy of birth following deaths, so I do look forward to the other side of grief as joy is never far behind. I see a lot of similarities in Cuba and the cycle of life. We have all been wondering what will become of Cuba now that their leadership has shifted and the borders are opening to the US, but I am more excited about what joy the Cubanos will bring to the world as they share their lifestyle, their passions, their resourcefulness, their art with us. So yes, Cuba, I Can Wait.
1 Tennesse Williams, Blanche DuBois, A Streetcar Named Desire
2 Andrés Yunior Gómez Quevedo Cuban Artist kindly known to me as Harmony