Everyone deals with partners with Alzheimers differently. No matter what you do or what decisions you make, they are the ones that are best for you and your partner.

My sister’s husband was diagnosed with Alzheimers a couple of years ago. There were definite signs before the diagnosis, but my sister would not talk about it. She clearly was having a moment of denial and I can certainly understand the dynamics of that emotion. If I deny, it is not really happening—we have all been there. Although she understood that everyone knew what the situation was, she was not willing to speak about it. I felt sad I could not commiserate with her and that she had no one to speak with about it. It took me a while to figure out that, firstly, she did not want to embarrass him in any way and admitting that he was losing his ability to function was over the top for her. And secondly, she did not want anyone to feel sorry for her. 

They say it is impossible to diagnose Alzheimers before you die but there are reliable neuro clinics who run batteries of tests on people to see whether there is something else happening that could be cured. 

One day I was out shopping and got a call from my sister. I could hear she was upset. She then clearly said to me: Ben has Alzheimers and then she cried. It would be a few months before she could put this diagnosis in perspective. Her first thoughts and actions were if I talk to him all day long and explain when he doesn’t understand something, I can keep him lucid. I can remind him of what he forgets. I could nudge him to remember things long forgotten. I could explain everything happening during a TV program. Basically, my sister believed she could stop his decline if she could do more. 

She still was traveling up to Pennsylvania to visit her son’s family, and was going on cruises, and the 4 hour drive to visit her granddaughters in Orlando. I actually went on three cruises with her during this time. As much as I loved being with her on these adventures, I understood at one point, that it was an absolute nightmare for her to travel. Every moment traveling with a person with Alzheimers means every thought you have and every action you take is for two people. You are totally responsible for another adult. 

On our last family cruise to Mexico for New Year’s Eve 2023, she told me on day two of the cruise, that she would never travel again. I have begun to understand why and respect her decision. She always made it look easy. 

When I spent time with her, I am amazed at her patience and perseverance. My sister was a caregiver—firstly in a pediatric ward of a large NY hospital, then in a local nursing home and then she became one of the first certified oncology nurses. She cared for those who were dying and nursed those who would survive. 

Every once in a while I give her advice and then I kick myself for even mentioning it. How could I possibly understand what she is going through and what was best. I am as clueless as everyone else who is not caring for someone with Alzheimers. 

She can speak freely now and laughs at some funny things that occur. Sometimes you laugh so you don’t cry. She has put routines in place so that she can take a walk in the morning and he can be safe in the house. She has him take a walk to the corner a few times a week, as well as ride a three-wheeled bike. He comes back quickly—sometimes she wonders if he actually left the garage. She does an exercise video every day with him; although I hear him tell her sometimes “why are we doing this?” She has put the hot tub in their routine as well as a dunk in the pool, followed by a shower and shampoo. She will bring him to the supermarket and other stores, but Costco is a stretch—he at times forgets how to walk—the one foot in front of the other—and the spatial disruption of the disease. When she does Wordle or Waffle, she involves him in the solving. He is good at finding the word but cannot figure out the “green/yellow boxes.” She explains them each day. 

Her day is filled with his care and directions on what comes next; and of course endless questions. He has lost the ability to know what to do—from getting out of the bed to sitting at the table for breakfast. He needs even the simplest directions. I think it is  profound that this happens to those suffering from Alzheimers. Each case is different and the care differs. 

Her life, as well as his, has changed drastically but she describes her mission as “keeping him safe and happy—that’s all I can do”. She does a marvelous job. I love her dearly.