Dementia Demands a Huge Amount of Sensitivity

Following a daughter’s experience with her father’s dementia, a young man, who assisted his grandfather around Crown Heights as he battled early stages of dementia, presents his perspective and has a plea for passersby and acquaintances.

By Rabbi N.D.

It is very sad to see a person with dementia.  

The person’s body is in full health but R”L the mind has deteriorated. For many people who haven’t witnessed this disease up close, it can be hard to understand or believe it. It’s just hard to fathom that this person who you’ve known for decades, standing here in front of you looking just the same as always, doesn’t remember you, and doesn’t recognize the world around him. 

My grandfather (I’ll call him “Rabbi Cohen” for the sake of this article) was diagnosed with dementia over ten years ago. In the early stages he would recognize most people. He might have gotten mixed up about the day of the week or which Shemoneh Esrei to say, but for the most part he could still function on a social level. But as his illness advanced, he stopped remembering people by name (including his own wife and children on occasion). There was a lot of tension and frustration, which sometimes could have been avoided. This is why I am writing this. 

My Zaide was a longtime shliach of the Rebbe. He taught thousands of students in over six decades of shlichus. He led countless farbrengens and taught countless niggunim. His memories of both the sixth and seventh Rebbeim plus several Rebbetzins were precious commodities throughout Lubavitch. 

Having taught so many people and led so many farbrengens, he couldn’t walk a full block in Crown Heights without being accosted by former students, all of whom would receive a warm greeting and a comment showing genuine interest in and knowledge of their lives. 

But then his illness worsened and he could no longer recognize his old students and  friends. People would see him on the street and come over, ready to get the friendly hello and gut vort that they were used to getting from their beloved Rabbi Cohen, but he would just look at them curiously, or with a blank look. The family member accom panying him would whisper, “Unfortunately, he has dementia; he doesn’t remember  you…” 

Here lies the difference between someone who is familiar with the disease and someone who is not. Someone familiar with dementia will just give a warm handshake and say, “Rabbi Cohen, it’s so nice to see you. How are you feeling?” 

Someone unfamiliar with dementia might have a hard time coming to terms with it, saying, “But of course he remembers ME! Why, I was his favorite student, and he gave me rides into town every week for a full year!” 

Then starts the testing. They would turn to Zaide and say things like, “Rabbi Cohen, don’t you remember me? It’s…, remember in year…, you taught me to learn the Frierdiker Rebbe’s sichos, and you used to call me a neshamah d’atzilus?” 

As the person continued, Zaide would get more and more aggravated and embarrassed, sometimes pretending that he remembered when he really didn’t, sometimes just getting upset, and ultimately lashing out. It’s not fair to the person suffering from this disease to put them to the test this way. 

Imagine someone who has always been known for his fast running. Then one day this person is in an accident and loses his ability to run or even walk. Would anyone dream of walking over to them as they sit in their wheelchair and saying, “Hey, let’s see if you can still run like you used to! Come on, you were always the fastest runner in the group.” Obviously, that would be cruel. It is the same with dementia. Someone with dementia truly doesn’t remember your name. There is no justification to test them, thereby embarrassing or frustrating them.

One time my Zaide asked one of his children quietly (because he knew he should know the answer himself, but he didn’t), “Zog mir… der Rebbe lebt?” Tell me… is the Rebbe alive?

His daughter responded gently, “No, Dad.” At first Zaide was sad, but then he brightened and replied, “But they say his son-in-law has a lot of promise.” That’s when it dawned on us that our grandfather was living in the 1950s.

I remember once walking home from shul with my Zaide in the early stages of his dementia. Arriving at his front door and looking at the combination lock that he had entered thousands of times (he had given us tricks to help us remember it), he turned to me and said, “Tattelleh, let’s see if you can work the combination all by yourself!” This was his way of trying to save face without saying, “Help me, I can’t remember my own code!” Of course I did not respond with, “You’ve done it countless times; you can do it, Zaide.” 

We learned over the past ten years to help our grandfather out of his worries and frustrations by stepping into his world and living his reality with him. We learned not to argue with him about what’s real when his reality is simply different from ours. Most recently, we have learned to communicate without using words at all, only using body language, facial expression, and familiar tunes. He doesn’t understand words and only becomes frustrated when we use too many. 

Tehillim (139:16) says: Yamim yutzaru velo echad bahem. 

Yamim yatzuru, days are formed (by Hashem and given to us), v’lo (with a vov), and for him, for man, the task is to bring the Echad, to bring Hashem, into the days that Hashem formed for us in this life.  

Every person on this world has a purpose and a mission, and every day that Hashem  gives a person life is part of their purpose and their mission. Why Hashem would give a good, G-d-fearing person such a devastating disease we don’t know. But what we do know is that it’s part of Hashem’s plan for this person and for us. For those of us around  the person with dementia, the best thing we can do is to make things as calm and secure for them as possible, in a situation where they have to feel tremendous insecurity. 

Someone with dementia is in a prison. They are imprisoned in their own failing mind. The best thing we can do for them is to get into the prison with them and try to give them a few minutes of warmth and closeness. Sing with them the songs they remember (even if they only remember them vaguely, they still bring joy), smile warmly and lovingly, make eye contact, sit next to them and hold their hand, and bring happiness into their world. 

The famous Rabbi Y.B. Soloveitchik, who had Alzheimer’s in his old age, once said to his daughter who was caring for him with great love and respect, “I don’t know who you are, but I can tell you are a bas talmid chacham.” 

Let’s all act in ways that show who our afflicted relative is, and who we are.