See Part 1 in the series Knowledge is Power and Part 2 The Facts and Myths.
What is it like to live with Alzheimer’s? How would you prepare to have it? Would you prepare any differently for any other life-threatening, life-limiting or deficit-causing disease?
Imagine for moment what it would be like if you lost one of the abilities that allow you to be independent. For many the easiest to imagine is the loss of the ability to drive, which ends a part of independence and may reduce socialization. For others it might be to imagine the loss of the ability to provide self-care. In any case, it is wise to be prepared for a day when you might be less independent and in need of assistance.
My objective is to be as prepared as possible to remain independent for as long as possible. My reality is that I do my best to take care of myself, and I have my estate planning in place so that my care and final wishes are known. Part of being able to identify my care wishes has been to identify my care philosophy, goal and strategy.
According to Merriam Webster, a strategy is defined as a careful plan or method for achieving a particular goal, usually over a long period. Armed with additional information and experience specific to Alzheimer’s and based on a philosophy of care aimed at a clear goal, our strategy for the care of my dad was the sequence of events that would ensure that we met our goal. Beyond the actual care details, the most important thing in providing care to someone with Alzheimer’s is human connection. I am often asked what made the biggest difference in the quality of my dad’s life. Simply put: basic human connection, kindness and compassion. There is a story that goes around the Internet. A man is at a medical appointment and tells someone he must leave on time for his daily breakfast with his wife who lives in an Alzheimer’s care facility. The man is asked if his wife knows who he is. He replies that she does not, after which he is asked why he continues to visit her. His response is simple: “because I know who she is.” We are the keepers of the identities of those with Alzheimer’s.
The philosophy, goal and strategy may be different for every person. What is important is that you identify what they are before you are in the midst of a crisis. Part of the process is to talk to your loved ones, those for whom you may be responsible for overseeing care. Know their wishes, their care goals and their desired strategy: in-home care or facility care, considering their financial options. In addition, make your wishes known to them through estate planning and documentation. Start to create a plan, because the moment you hear those words is not the time to be planning. Yes, Alzheimer’s usually offers many stages, so there will be time to clarify and detail your plan, but at least the necessary discussions and thought processes will have begun. The more those you love are prepared (estate planning, etc.) and the more you are prepared (truly the greatest gift you can give your loved ones), the more life can go on as usual for as long as possible. You need to have a plan, a basic structure or outline that can be modified as time goes on. Remember that a goal without a plan is just a dream.
Alzheimer’s is a marathon, not a sprint. Anyone who knows about marathons knows that how you recover is based on how you prepared. If you did your training according to the time-tested schedule for runs, you will recover from the full event quickly. If not, you will likely suffer. How you plan will also determine whether you thrive or survive the experience. In caregiving, resilience is about how you recharge, not how you endure. Often the patient receives medication. As a caregiver, what is your medicine? What recharges you? For me, it is dance.
I do not know if I will be one of the Alzheimer’s statistics. I don’t know if I will have the disease or if I will care for another with it. I do know that not only can I be prepared but I have choices. I choose to be optimistic about the future. There are new thoughts on causes and possible prevention. There are new medications on the horizon every day and new approaches and techniques for treatment. Research continues to be supported (Bill Gates recently donated $50 million to finally find a cure for Alzheimer’s) and a vaccine may be nearing trials. And, I choose to be kind. My experience with Alzheimer’s tells me that the disease has great potential to amplify a person’s natural tendencies. Therefore, I choose to be kind so that if I live with Alzheimer’s, I will be kind to those who help me to remain independent and who later care for me.
If it was possible for my dad, it is possible.
“I am thankful for the ways in which he has touched my life.” a family friend
As I said, my dad had Alzheimer’s. He was a remarkable man, brilliant in fact. While in college he was recruited for the Manhattan project, the building of the atomic bomb, which he declined. Shortly thereafter he was offered a job with Sony to work on the first television tubes. He declined in order to enlist in WWII. Following WWII, he worked for the FBI and J Edgar Hoover invited him to work in the first forensic lab. He chose to move his then growing family away from the politics of Washington, D.C. to Chicago and later worked for the company that created Elephant Glue, the edible school Pogo Paste, Smelly Markers, Oil Pastel Colors licensed from Craypas in Japan, their most famous Sharpie markers and many other school supplies. He was a ranked champion tennis player and is in the Hall of Fame for both tennis and basketball at University of Denver. Later in life he became a charter boat captain, one of few licensed to work all of Lake Michigan. Yet with all of his credentials, his greatest accomplishment was his role as husband for 69 years and father. He was one of the two most truly decent humans I will ever know. The other is my mom, my dad’s reason to succeed and his anchor to reality till the end.
“He also motivated me to be what I can be in life.” a caregiver
For me, the 2.5 years I oversaw the care of my parents was more challenging than everything I experienced during the prior 54 years collectively, but… it was the most worthwhile experience of my life. I had to learn a lot, quickly, more so than at any other time of life. And what became obvious to me is that we have a responsibility, as a society, to educate ourselves and to do better, to do the best that we can to prepare and prevent. The statistics don’t say if, but rather when we will have to deal with it. I didn’t see Alzheimer’s coming and certainly wasn’t prepared. I truly wish I had been.
“ I eventually looked at him as a grandpa as opposed to a client.” a caregiver
The doctor caring for Maria Shriver’s father when he was living with Alzheimer’s told her, “If you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s.” That is absolutely true. My experience with Alzheimer’s was good, not all are. I cannot speak to what anyone else’s experience with the disease will be. But after 12 years of treatment, and likely more living with Alzheimer’s, the day on which my dad was last conscious he called me by name and spoke saying something of meaning only to me. He sat with my mom, held her hand, knew exactly who she was, and told her how much he loved her and that she was the love of his life. He was tired of living in the body that had carried him for 92 years, and it was time for him to go on his own terms. That … to me was the ultimate success! He lived A Most Meaningful Life to the end of his life.
We have covered a lot of ground in this series: why we should care about Alzheimer’s, the facts, the myths and being prepared. I want to leave you with this. Gunder Hagg, of Sweden, set the world record for running a mile in 4 minutes and 1.3 seconds in 1945. Athletes tried and failed, for many years, to run the mile in less than four minutes. It was, therefore, considered impossible. Let that sink in a minute…. It was considered impossible! Nine years later, on May 6, 1954, Roger Bannister, became the first person to break that barrier coming in at 3 minutes 59.4 seconds. Interestingly, his world record in the mile run did not stand long, broken little more than one month later. Once broken, several factors such as improved surface conditions and training and running techniques, contributed to the continual lowering of the record. It only had to be possible for one man, Roger Bannister, for it to become possible for everyone who followed.
“He has made me a better person just by knowing him.” a caregiver
If it was possible for my dad to live a most meaningful life until the end with Alzheimer’s, then it is possible.
Parts of this series contain excerpts from A Most Meaningful Life, my dad and Alzheimer’s … a guide to living with dementia.
For 2½ years, I provided full-time care of my parents, one with Alzheimer’s, delivering the care and end of life they desired. Since their passing in 2014 I have been on a mission to help others see that even with Alzheimer’s the possibilities are limitless and a meaningful life is possible, that death is due its dignity, and that everyone deserves compassionate and dignified care.