Playing Along with A Dementia Patient's Realities

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It was not unlike any other day, but this particular afternoon 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 to arrive. I did what I usually did, and waited a few days to see if this episode of delusional thinking would pass. It did not.

So, I created a facsimile of a medical degree on my computer with my dad's name on it. I 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; an 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 else and eventually I would need to produce it.

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, hitting his head against the baked desert floor and sustaining a closed head injury. He was in a coma for months and had to learn to walk and talk again. His rehabilitation was successful, and he stayed in the army until the war ended, but was 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 when I was 14 years old. Dad continued taking any graduate classes that would help his career or simply because they interested him, and he became very successful in the world of public health.

As Dad aged, however, fluid started building up behind the scar tissue in his brain. He underwent surgery to drain the fluid, but it backfired. He came out of the procedure 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. 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 communicate with him and see to his unusual requests.

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, "received" letters, and, of course, made degrees and awards.

Although he was not able to remember much, Dad could recall attending medical school at the U of M. Why wouldn't he have a degree, then? He watched Lawrence Welk on public television, and I even bought him a baton because he wanted to direct the band. Why would he not 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 and bring him back to reality. My purpose was to redirect him. In this doctor's eyes, I had no business playing Dad's game.

Hogwash, I thought. I knew my father was no longer capable of coming into my "reality" and I refused to torture him by trying to force the impossible. If I argued that he was delusional, he would feel degraded and disrespected. This reasoning made no sense to me. I still had my brain, so why couldn't I put his anxiety to rest by traveling into his world and joining in his reality?

The funny thing is, a few years later, a different psychiatrist came in to Dad's room and was admiring his wall of degrees, awards and achievements. "I didn't know he was a doctor," he remarked to one of the nurses. "He's not," the nurse said with a grin. He burst out laughing. Later he asked me where I learned my coping technique.

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

I eventually learned that there is an actual theory about this approach to reasoning with patients who have Alzheimer's and other dementias called "validation therapy." It makes me smile. I didn't need a theory to know what Dad needed. I just needed love.

Validation is exactly what Dad required, because his delusions were real to him. 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 transpiring in our town, right outside his window. I would 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.

However, I certainly did not encourage him and say, "Sure, Dad, there's a war outside and they will blow us up anytime." I would merely play along and try to convince him that we were in a "safe zone," so to speak. If it did not take, 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 would just have to ride it out.

If a particular delusion did not cause him to feel threatened or upset, I resorted to just agreeing with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant for one of their exhibits? It kept him busy and helped him feel useful. What did matter that he needed to study "Grey's Anatomy?" I found him a copy in the used book store and brought it to him. He also requested a copy of "Robert's Rules of Order." These things were easy enough to find and readily available for purchase.

My point is this. Dad's reality was as real to him as mine is to me. Why should I, a person who supposedly can use their brain, make his life miserable by continually telling him he is wrong? Going with the flow was not hurting anyone else, and it was making Dad's life a little more bearable.

It is certainly a personal choice to make if you are the family caregiver for a loved one who is suffering from dementia. It seems to be a simple solution to allow them to persist in their reality, as long as it is safe and does not pose any harm to themselves or others. Perhaps it is no different than allowing a child to dream of what they want to be when they grow up or pretend that they are firefighting hero or a prima ballerina.

There is no cure for dementia and it is a progressive, debilitating disease. There certainly seems to be no harm in validating their reality now and then throughout their final years. The other alternative often includes conflict, tension and hurt feelings. Why would I not do what little I could to help my father feel some sort of purpose, peace and accomplishment? I am his daughter. He would have done as much for me.

Carol Bradley Bursack

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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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126 Comments

No Carol you made my day when I read your story. One benefit for me is that I have been in the medical feild for over 12 years now and I have spent many years helping and caring for people like my Uncle, so all that has been a great benefit for me. There are days when I sit and just stare at him ( when he is napping of course) and think of the past 30 plus years and wonder how he became who is today. In just a matter of months he become some one that I remember from years ago as well as a stranger. Very frustrating and heart wrenching to witness, I can only imagine what his thoughts are when he is "in his right mind" which is not often now a days, but none the less he knows what is going on and it must be horrible. I will cherish every memory he has that he makes alive in the "now" and I will engage with him as if that is where we are at that very moment, no matter what or where his thoughts take him, I will be there with him for the ride. I will never alow any one to disengage with him, or disrespect him, or make him feel less dignafied. He will live each day of the rest of his life with respect, love, dignity, values and every ounce of pride he had 20 years ago. Once again thank you for sharing your story and I truly hope others take every word you said to heart and go with it, it will be one of the greatest acts they can give to their love one during there last years.
Kim
That is just how I handled my grandmother who had Alzheimer's. If she said it was wednesday, then by golly it WAS wednesday even if it was monday and I would make sure everyone knew it! My grandmother had been terribly upset by other relatives and even an idiot of a doctor when they kept correcting her in the earlier stages of the disease. They kept on trying to "bring her back to reality" and it upset her and made her cry and I got to the point where I was going to ban anyone from visiting who did that to her. She would cry "I must be crazy" and I would hug her and say "You're not crazy. It IS wednesday (or raining or snowing or the sky was very green). He is just being silly." I also got a new doctor! In the early stages, they do know that something is wrong some of the time and we can make it easier for them. Whatever she thought was her reality and though it was like having a part in a play, I played along with whatever she said and took what she said as seriously as if it was true.
That is a very great story and I am very pleased to know that I am not alone when I "enable" my Uncle's wild thoughts. He used to own a bar and later on sold that and bought a store. The bar that he sold was serving to minors and HE was the one who helped to bring that to the attention of the athorities. The other night he was having those memories and woke me up at 3 am to talk about the action plan to stop that bar from seriving minors because it was just wrong. I was very much not awake, but I did just as you did. I went along with his "reality" and we talked till morning about what we will do to stop that and all was good! After we both had a little nap he never brought up that topic again or at least not yet! lol! So I believe that it is the right thing to do and go along with them on their past adventures they no longer live in the present or future and I will take what I can even if it is from the past. So good job and I hope every one takes this advice and just go on the ride with their loved one. Enjoy it while you can