Living With Alzheimer’s: A Daughter’s Perspective

A Lubavitcher woman writes about her experience implementing an innovative method in bringing peace and tranquility to family members suffering from Alzheimer’s.

By a Lubavitcher woman

For the perspective of a grandson, see here.

I’d like to give the perspective of a frum woman whose father has had Alzheimer’s for over 13 years. Michael Krauthamer’s book, “Walking in Their Shoes,” and his visit to our home and his meeting with my father, were significant. The main lesson I needed to learn from Michael was that being dishonest with my father was actually helping him, and was the way to respect him now: Michael calls this “validation therapy”.

I had never in my life knowingly lied to my father. But now, it was a kindness to do so.  For example, if my father would say, “Oy! I didn’t bring my mother her food! I have to go right now!” the natural and honest response would be, “Tatteh! You are 90, and your mother passed away 60 years ago!” but is that a kindness to him? Is that really showing him respect in his current situation? 

That would only upset my father. He would argue and scream and cry, we would argue and scream and cry. What would be gained? So we learned from Michael to “walk in his shoes,” to enter his reality, to accept and redirect, by saying, “Dad, I just went there and I saw your mother, she was fine, and she said to tell you she doesn’t need any more shopping today. But I’m going to the mailbox to send her a letter, would you like to come?” My father would be relieved to hear this, be redirected to the walk, and there would be peace. Sometimes he would hand me the phone and ask me to dial his mother. I would dial one of my si ters (who is named after his mother) after first telling her to speak in Yiddish and play the role of mother. 

Let me try to demonstrate how we changed, pre- and post-learning-validation-therapy: 

Pre-learning-validation-therapy: “Chanala, we must go to the post office NOW, I have to  send out the mailing to all the parents!” 

“Tatteh, the school where you worked 40 years ago has  long since closed down, there’s no mailing to send!” “Chanala! I MUST send the mailing! Rabbi F. is relying on me!! I’m going to the post office right now!!” (Father gets more and more agitated, daughter bursts  into tears.) 

Post-learning-validation-therapy: “Chanala, we must go to the post office NOW, I have to  send out the mailing to all the parents!” 

“Tatteh, okay, I’ll help you.” 

“Yes, it has to be done right away! Let’s go now!” “Tatteh, may I do it for you? Can I take care of the mailing? I’ll go to the post office and do it.” 

“You have the labels, and everything?” 

“I have it all. I’ll take care of the whole thing.” Father’s shoulders sag with relief. “Would you really?” “Yes!” 

“Good, because I’m tired.” 

“Now, Tatteh, let’s finish saying Tehillim. Here’s your Tehillim, the beautiful one you love with your father’s name in it. Mizmor leDovid…” 

Father becomes engrossed in saying Tehillim and feels good that the mailing has been taken care of. Am I pretending? Is this dishonest? I am just entering my father’s reality. He is actually experiencing the pressure of needing to send the mailing. Because I  love him, I am feeling it too, and taking it away from him so he can experience relief. If I argued with him that there was no mailing needed, he would not be able to believe me because due to his disease, he is experiencing life in the 1950s. 

One time I walked into his house straight from work on a Tuesday night, holding my pocketbook and car keys. My father became visibly upset. He began to weep. “I never thought a daughter of mine would be  mechalel Shabbos befarhesya!” Instead of trying to convince him that it was not Shabbos, I put away my keys, gave him his becher, and let him make Kiddush. First I heard him mutter to himself, “Let’s hope the rest  of the frumme velt doesn’t find out what’s going on in Lubavitch…”

Throughout the ordeal, we are in close touch with our Rav,  who understands Alzheimer’s, knows my father well, and is reachable whenever we need him, baruch Hashem. After that event, my mother and I decided that when we return home with our car keys and pocketbooks, we’ll leave them in the front hall and walk in without them, in case it’s Shabbos for my father. Why upset him? He can’t believe us that it’s Tuesday any more than we can believe him that it’s Shabbos. 

I called the Rav one time to ask what I should do when my father wants me to say certain parts of davening, and it’s not the right day for that or I said it already. The Rav said I should do what I would do for a small child who is learning to daven. If for a small child you would say Hashem’s Name, then say it here. If you can get away with not saying it, without causing distress, then don’t say it. A few times, my father took the siddur and said the whole thing from beginning to end, over a few hours. No amount of arguing would convince him otherwise; it would only make him agitated and upset and turn the whole household over.

What for? Enter his reality. Leave it between him and Hashem. My father went to shul three times a day all his life until it reached a point where it was embarrassing to him and disturbing for others when he would interrupt davening to call out, “Nu! Yaaleh v’yavo!” At that point, we began davening with him at home. He would daven at home as if he was part of a minyan, with aliyos and everything. The Rav said to go along with that so we did. (Of course, everyone must consult their own Rav with these she’eilos.) 

On Tishah B’Av one year, towards midday, my father asked, “Chanala, when are we having breakfast?”  

“Tatteh, it’s Tishah B’Av!”  

“Oh, oh, of course, we can’t eat.”  

An hour later: “Chanale, when are we having breakfast?”  

Finally, I called the Rav who said he should eat, although physically he was capable of fasting. Before Yom Kippur, I called the Rav again. He said that if my father kept asking for food, he should eat, but we should not give him the food; let a non-Jew give it to him. 

So if I walked in on Shabbos morning and my father was in tefillin, I didn’t say, “Tatteh! Tefillin on Shabbos??”  I just let him daven that way. This was between him and the Eibershter, the One who gave him this tragic disease. 

The first time I saw my father eating inside the house on Sukkos I couldn’t believe it; in Chabad, the men do not take so much as a drink of water inside the house on Sukkos, and we grew up in a very cold place where my father would climb through snow to get to our sukkah. But now he was eating inside on Sukkos because he didn’t remember or believe that it was Sukkos. Baruch Hashem, we knew from Michael Krauthamer’s validation therapy to let him eat inside without arguing.

Our Rav often reminds  us, “Let it go, because right now he is not mechuyav in mitzvos.” Of course, we still today help him do the mitzvos that he can, such as hearing the Megillah on Purim, or putting on tefillin when he is willing and able, but remembering that he is not mechuyav b’mitzvos is helpful to us. It was particularly difficult for us to enter my father’s new reality with him because it was difficult for us to believe he sincerely believed what he himself was saying.  

My father is a man who was known throughout the Chabad world for knowing people’s birthdays, the yahrtzeits of their ancestors, and their Jewish names and the Jewish names of their ancestors going back several generations. He is a man who could tell you which day of the week Yom Kippur would fall out in ten years time, and why.  

He is a man who would drive around in the snow picking up men to make up his minyan so he would have a minyan in the small town we grew up in, where he was a Chabad shliach for decades.  

He was the man everyone turned to, to know exactly which kriah to say in shul. Any question about davening, he knew the answers immediately. If you heard a passuk and wanted to know where it was from, you just asked  him and he knew.  

My dear father was an expert baal korei and in fact he leined for both the sixth and seventh Lubavitcher Rebbes, zy”a. He taught us which brachos to say on which foods and in which order. He knew every grandchild’s birthday and he made sure to celebrate it fully, often with a trip and a gift. He was a detail man. And suddenly at the age of 79, those details began to slowly desert him. Now he is 92 and the suffering continues. 

I want to say this to other family members of loved ones with Alzheimer’s. Keeping the family b’achdus is the best way to respect your loved one with Alzheimer’s. Even a sick person will sense if there is discord, chas v’shalom. In our family, we have had our disagreements.

For example, sometimes someone feels we should take Tatteh to a grandchild’s wedding. I disagree. Why embarrass him publicly, even if he doesn’t know he is being embarrassed? He will definitely become confused and upset and when people come over to greet him, he will yell at them. The loud music will feel to him like an attack. Why would we cause him this public loss of dignity? Others in our family see it otherwise.

I was extremely broken that my father wasn’t at our last child’s wedding. But it wasn’t about me, it was about my father, so I wanted him to stay home. Of course, the chassan and kallah go for a visit to my father and to receive his brachos and good wishes, whether he can verbalize them or not.  

There are other issues too where we family members have disagreed. But we all agree that come what may, we have to stay a close, loving, and respectful family for my father’s sake. 

To me, protecting my father’s dignity is very important. Even when he feels and acts like a four-year-old, he is my father and he relies on me to protect his dignity now that he cannot do it for himself. Sometimes when I can’t figure out which way to go, I ask myself, when Moshiach comes, will Tatteh thank me for this or will he say, Chanala, you shouldn’t have? 

It is uniquely strange and painful to see someone we love fall into that fantasyland of Alzheimer’s, where  Tuesday is Shabbos and I, his daughter, am suddenly his mother. But arguing with the patient, PROVING to him what day it is or that his mother is gone or he no longer has a job to go to, will only cause more pain and more suffering to an already-suffering person with Alzheimer’s.  

Once you learn the validation techniques, to enter their reality and redirect, life is so much easier, for both the patient and for others in the household.  

Keep the peace. Hold their hand. Sing the old songs from the patient’s childhood, where s/he probably is right now. Daven for a refuah sheleimah. I daven with you.