The tyranny of undiagnosed dementia
Sep 23, 2022"I'm not the crazy one!" I will always remember the moment when I realized that it wasn't me. It wasn't my judgment or my ideas or my thoughts that were out of line. My mind was working correctly. It wasn't me.
Loving a family member with undiagnosed dementia was maddening. It was absolutely crazy-making because I kept questioning my own memory and my own plans and my own ideas. My contributions were discarded and argued as being wrong or untrue, and yet I was sure that I was correct....or so I thought? Did I get that date wrong after all? or how could I forget the doctor appointment? There were some days that were nearly intolerable: I couldn't say anything right. I had no idea what I was talking about, or so I was told. Then, the next day, everything was rosy and cheerful and normal again.
I remember the frustration of never knowing what day I would be receiving: the solid, stable happy day, or, the unpredictable angry day in which my every comment was challenged. I felt like Betty Davis in in the 1940's film, Gaslight.
There was one day that lives in my memory: we needed to shop for socks. That shouldn't be an issue, should it? Choose the color, and choose the size, and boom, you're out the door. But, it wasn't that easy. We needed to look at each sock and examine it for quality of construction, texture, thickness, durability, and the most important feature, length: they needed to be knee socks. But they weren't over-the-knee length, that was too long; however, under the knee was too short. They had to be soft socks. Not cotton, not rayon, not polyester, but not wool either. There was so much frustration in this shopping excursion-trying to explain and reason how and why only made the experience worse. No ideas were welcomed and no problem solving was appreciated. We were both just sick of the whole thing.
But we kept looking at socks, driving to and from three different stores for about an hour and a half. Getting the wheelchair in and out of the car and pushing it through the parking lots was just so darn hot in September in Phoenix. But we persisted, by golly, we were gonna get those socks no matter what it took.
At the fourth store, all of a sudden, it was time for lunch, and socks no longer mattered. That was it. The hunt was over. We never did get any socks.
I just fumed over that sock hunt. For months! I was so angry that my time was wasted and my temper was tested. I was so angry at the imposition into my already jam-packed schedule and it was all for nothing. This happened again and again for so many items ranging from lipstick to tweezers to a ridiculous red laser light all without success. It was a repetitive habit and I found it absolutely infuriating.
Then, one very very sad day, four months later, in preparing for this loved one's funeral, I needed to purchase the final outfit. I went to a familiar clothing store and I looked at the checklist the mortician had given me. The last item in the list was, you guessed it, socks. It was a horrible feeling that swept over me: I felt sucker-punched, the wind knocked clean out of me. I felt weak and wobbly and nearly passed out as I stood in front of the racks of socks. I began to weep in the clothing store right in front of all those stupid socks, reliving that day when I had been so filled with anger.
I had been so frustrated and I now felt so guilty. I felt like a total schmuck for having all those terrible feelings while serving someone that I loved. I always remember this story while shopping, and I have to confess that it took me about six months to be able to pass by a rack of socks in a store without experiencing all those negative emotions again.
There was so much I had to learn about dementia.
The first thing I learned was that it needs to be properly diagnosed. In our case, it would come and go and we never knew when it would show up. If it was a good day, the MMSE (Mini Mental Status Exam) would be passed with flying colors and no further conversations would occur. If it was a bad day, there never seemed to be anyone around to witness the behaviors, and even if a test was available, there would be no way in the world to convince this loved one to take it.
After our loved one passed away, when it was too late to do anything about it, I learned that there are differences between the diagnostic tests for dementia. If I had known it at the time, I would have insisted on proper evaluations to search for lapses in cognition. We were only ever given only one assessment and that was the MMSE. I didn't know that other tests were available.
I also learned that there are about 120 types of dementia! The word "dementia" is a term that is used to describe a breaking down of brain function, and an actual shrinking in size. There are so many different versions of the disease: Alzheimers, Lewy body, Vascular, etc., so it is imperative to get the proper diagnosis so you will know what to expect and how to interact with the person.
The last thing that I learned was that I wasn't alone in all of my emotional responses to this illness, and the subsequent exhaustion was absolutely normal given the situation. I discovered that the suicide rate of a full-time caregiver for a patient suffering with dementia TRIPLES the national average*. The stress of trying to live with a person who has completely changed yet denies that they are different, is so heavy and at times seems utterly unbearable. I am not a doctor or a psychiatrist, but I can sure as heck tell you that caring for a family member with this particular brain degeneration will try your patience and tolerance and wit to levels that you didn't think were possible and it can leave you exhausted and with the feeling that you are absolutely out of your mind. There are days that you honestly think you cannot do one more thing. *( Teepa Snow, America's foremost expert on dementia and the elderly, 2013 )
I am not the only one with these experiences and if there is one thing that I can recommend, it is to visit Teepa Snow at this website link:
Teepa Snow is America's leading expert on dementia. She can give you the most helpful information that you had no idea existed. Her mission is to educate families and caregivers on how to treat persons with this brain illness in a positive and caring way. She explains why patients behave in certain ways and she teaches you how to navigate those behaviors in a positive way in order to get good outcomes.
At the time we were dealing with our situation, Teepa had several videos out on YouTube and we watched as many as we could find.
But now, she has this unbelievably amazing website available with incredibly organized information. There are videos and articles and downloadables that will help you understand so much about this illness and how you can properly interact with the patient.
I wish I would have known how to have behaved differently around our loved one. I wish I would have known that correcting and confrontational conversations do absolutely no good, and actually damage the relationship. I have since learned from Teepa simple little techniques like how to stand, where to stand, how to make eye contact, how to avoid arguments, how to direct and invite the patient to cooperate. Her techniques are just lifesaving and sanity saving for anyone who is caring for a dementia patient.
Also in her website there is information to help those who may have just been diagnosed with dementia, and she gives helpful advice on what the next steps can be.
If you are dealing with dementia in any of its forms, may I suggest visiting Teepa Snow's website. You will be forever changed for the better! Here is the link again. Do yourself a huge favor and see for yourself how amazing this resource is.
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