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A Caregiver’s Story: Getting Into a Dementia Patient’s Head

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusion thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad's name on it, scribbled some "signatures" on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

I added it to the other awards and degrees hanging on the wall; the entomology "degree," his legitimate college degree, some other earned awards, an "award" for helping direct Lawrence Welk's band. The wall was cluttered with the real and the fake, but I knew I would need to find room for more. Dad's brain would tell him he had earned something and eventually I would need to produce it.

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Dad had, indeed, gone to medical school at the University of Minnesota, but that was before World War II. He took some time off to be an archaeologist and then the war broke out. During maneuvers in the Mohave Desert, Dad passed out from the heat. He smacked his head against the baked desert floor and sustained a closed head injury. He was in a coma for months and had to learn to walk and talk again. He succeeded, and stayed in the army until the war ended, but kept Stateside and trained as a sanitarian.

Dad became director of Sanitation for the city of Fargo, meanwhile raising a family and, like so many returning soldiers, he went back to school. He attended school at night and worked during the day.  I remember going to his college graduation. I was 14. Dad continued taking any graduate classes that would help his work or simply because they interested him, and he became very successful in the world of public heath.

As Dad aged, fluid started building up behind the scar tissue in his brain. He had surgery to drain that fluid, but the surgery backfired and he came out of it with severe dementia – and bonded with a voice in his head we came to call Herman.

That is when reality changed for all of us.

Dad moved to a wonderful nursing home, a block from my house, and for the first few years, my mom was still able to live at home, so I'd take her each day to see him (eventually, my mother entered the same nursing home). Everyone in the family wanted to help Dad, but I was the only one who could really get into his head and be who he wanted and get what he wanted.

I was his office manager. I brought him his brief case. I made a graphic letter head for him, and made him business cards. I took dictation. I mailed letters, and "received" letters – and of course – made degrees and awards.

What Dad could remember was attending medical school at the U of M. Why wouldn't he have a degree, then? He watched Lawrence Welk on public television. I even bought him a baton because he wanted to direct the band. Why wouldn't he have an award for that?

One day, a couple of years into this saga, a psychiatrist caught wind of what I was doing. He chewed me out royally. I was supposed to ground Dad. Bring him back to reality. Redirect him. I had no business playing Dad's game.

Hogwash, I thought. I know my dad. I know he is not capable of coming into my "reality" and I wasn't going to torture him by trying to drag him along. If I argued that he was delusional, he would feel degraded and disrespected. It made no sense to me. I still had my brain. Why couldn't I put his anxiety to rest by traveling into his world – his "reality"?

The funny thing is, a few years later, a different psychiatrist stood looking at Dad's award and degree covered wall. A nurse stood next to him. "I didn't know he was a doctor," the doctor said. "He's not," the nurse said, with a grin. The doctor burst out laughing. Later he asked me where I learned my "technique."

"I'm his daughter," I said. That's all I needed.

Now there is an actual theory about this called "validation theory." It makes me smile. I didn't need a theory to know what Dad needed. I just needed love.

Validation is exactly what Dad needed, because what was real to him was real in his world. Yes there were times when I would try to explain true reality, but I chose my battles wisely. I tried to keep him from seeing television news because he would insist that the war going on (there's always a war going on somewhere) was in our town, right outside his window. I'd try to get him to walk to the window with me, but no, he knew the war was outside and I shouldn't belittle him by saying it wasn't.

Okay, I wasn't going to "play his game" and say, "Sure Dad, there's a war outside and they will blow us up anytime." If I couldn't convince him of the reality that we were in a "safe zone," so to speak, I would calmly say, "I'm sorry you can't believe me, but we are okay. We'll talk about it another time." Usually, these things happened when he was having a particularly bad day, and we'd just have to weather it.

However, the rest of the time, I'd just agree with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant? It kept him busy. What did it hurt that he needed to study "Grey's Anatomy?" I found a copy in the used book store. What did it hurt that he needed a copy of "Roberts Rules of Order"? I found that, after a search, online.

My point is this: Dad's reality was a real to him as mine is to me. Why should I, who supposedly can use my brain, make his life miserable by continually telling him he is wrong, when going with the flow was not hurting anyone else, and it was making Dad's life a little more bearable? Why would I not do what I could to help him have some feeling of accomplishment? I'm his daughter. He would have done as much for me.

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.
 






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