Hanging On To Her Identity

Sharing Experiences To Help Alzheimer's Home Caregivers Of Loved Ones.

One of my greatest fears as an Alzheimer’s home caregiver for my wife is that she will lose complete recognition of me and her family.

This is the one thing I was so terrified of when my wife was diagnosed with Alzheimer’s. She could forget who she is and lose all sense of self. If that happened, she wouldn’t recognize me, her three kids, or any member of her family anymore. Many of us, without any information, assume this is a common occurrence with Alzheimer’s, and this was my horror. I was scared to death.

Hanging on to her identity, protecting it in any way I could, is my obsession. Every minute of every day I am with her, I begin tireless interaction with her as her 24/7 home caregiver. I know she might forget who she is at any time.

She Knows Who We Are

One day, I discovered by chance that when I dictated her name, she could write it down. Wow! “When is your birthday?” Slowly, she would write down the date. I couldn't believe this. I then dictated the names of my kids separately, and she wrote each one down slowly with a lot of concentration and almost without any errors. This was a tremendous game changer. I had to hang on to this unknown ability and never let it disappear. Now, I had to expand this. I would begin to make sure that she always knew she was the mother of her three children and could interact with them as their mother.

I created a new activity by pasting the five selfies from our immediate family in a column and in a second column out of order on large drawing paper. I began asking her questions, pointing to one of my sons and asking, “Who is this?” and she would slowly write my son's name. Again pointing, “Who is this?” and then she would write down my daughter's name, etc. I did this with all five members of our family. Sometimes with a little spelling help, but not much. The most important thing was that she recognized each family member. I congratulated and praised her no matter what, and I would get a smile. It didn't matter if she didn't respond perfectly. She couldn't speak, but she could repeat a name after me. I knew that repeating a name would help her retention. I was determined to improve her ability and not let it disappear. I repeated this exercise two or three times a day, mixing up the selfies on a second and third sheet of paper. We are on our way.

With this selfie method, I began working on the most critical part, her relationship with each family member. I spread the five selfies out on the table, and I asked her to first paste, for example, “the mother.” She would hesitate and slowly select the correct selfie. I proceeded to ask her to paste the selfie of each son, daughter, and then the father. This is a slow process with a lot of hesitation where she is intensely concentrating. There are long silences without interrupting her and a lot of patience, sometimes with a little coaching, but this activity was working. There was no rush, as I knew that she was intensely concentrating.

After about an hour, we would stop as I could see she was getting tired. Regardless of how good or so-so she did, I congratulated her with a gigantic kiss so she would consider this activity to be fun and feel rewarded. She knew she was making progress as she always smiled and returned the kiss.

Every day, I repeat this activity, but sometimes mixing it up a little more to avoid this becoming a boring routine for her. Moreover, my idea is to challenge her just a little more and arouse her curiosity. I paste the selfies in two different columns out of order. She has to draw a line matching up the two selfies that answered my questions about relationships. “Connect the two pictures of the mother, the son, the father, the daughter, etc.” She began to slowly draw lines connecting the mother selfie at the top of one column to the mother selfie at the bottom of the second column. Matching her son's selfie from the middle of one column to the top of the other, etc. Every so often it was difficult for her to physically complete the connecting line as her “command signals” were somewhat impaired. She would begin drawing the line in the correct direction, but I would help her complete it. If she were not, I would gently interrupt her with as many verbal hints as she needed to correct herself. After correcting herself, I would shout my congratulations with a big hug. I got that smile, which meant she was proud of herself and, most importantly, she was not becoming frustrated and was having a good time.

In her handwriting on her own, she writes the name of each member of our family and their relationship to her.

Self-Identity Is Never Permanent

Her ability to identify herself, myself, or her family members is not forever. We know that with Alzheimer's, this can disappear from one minute to the next. I am always afraid she will stop recognizing me, giving me that blank look, that “daze into no man's land” that I have seen in the movies. That is the day I have to avoid and is always my greatest fear. I am terrified of losing her “recognition of me and her family,” so I constantly keep checking for signals and confirming with cues and gestures. I am constantly searching for an opportunity through different events and activities where identity can be confirmed many times a day.

I live in “panic mode” morning, noon, and night, as my only passion in life is to protect her memory to be able to know who she is and identify her family. This is always a constant desperation on my part, especially because she doesn’t speak. The moment I wake up every morning, I am afraid of losing her self-identity.