The diagnosis

Even thought it has been just over seven years since we received “the diagnosis” that day is still fresh in my mind. A few weeks earlier, as I accompanied my mom to a clinic appointment with her family practice physician, we discussed my growing concern with Mom’s memory problems. There had been signs for a while, just small hints really, and at first you chalk it up to the reality that Mom is just getting older, and being forgetful is just something that happens. The most obvious thing was she repeated herself often. She remembered who called or who stopped in for a visit earlier that day, but she’d tell me five or six times, forgetting that she had already told me. She also kept asking me what day it was: “It’s still Monday, Mom. It was Monday five minutes ago when you asked me that same question.” It was easy to lose my patience in the beginning. She would also struggle to find the right word for something. She might ask, “Where is that ….” and then draw a blank and say, “I can’t think of what I want to say” and then finally give up and say “forget it.” It was frustrating for both of us. But these were just little things. We could live with this.

Then she started doing things like making peanut butter cookies, but leaving out the peanut butter. Mom always was a great cook and loved to bake, too. Before she got married she owned and ran a diner. I watched her cook as a child and when I was old enough to help she taught me how to make her signature dishes. She rarely used recipes or cookbooks. She cooked from memory. But now that was slipping away from her. I noticed it before she did. But eventually she realized something was wrong, too. When her granddaughter requested a homemade cherry pie for her birthday, Mom was more than happy to oblige. I helped get all the ingredients she needed and I was her assistant in the kitchen. What started out as a happy, fun activity turned into a negative one. Mom was confused, couldn’t remember how to make the pie crust or how to roll it out. She was talking to herself, unsure of where to find things in the kitchen, constantly losing her train of thought. When the pie crust kept sticking to the counter and the rolling pin and ripping, she was getting more frustrated. In exasperation she muttered, “I don’t know why I have to do this!” I tried to help, but then she got mad at me. But we stayed with it and eventually got the pie in the oven. It looked a little funny and it wasn’t like the pies Mom used to make. When my sister saw it she was a little disappointed. But I knew Mom had done her best. Things were changing and we needed to start accepting that.

One of the bigger problems with Mom’s memory related to finances. She would forget to pay bills, she did not remember how to balance her checkbook, and she started to get overdrawn once or twice a month. I was still working and getting paid twice a month, and I deposited one of my paychecks into her account a month and she was still running out of money. Because she forgot several credit card payments, the company called and set her up with an automatic monthly payment that they took right from her checking account. They were taking about 50% of her monthly social security income. When I called to have that stopped, they wouldn’t discuss her account with me because I didn’t have power of attorney over her finances. So I checked on how to do that, filed the paperwork, and began managing my Mom’s finances for her.

When we told her doctor about all of these things, he referred her to neurologist. During that first visit he conducted a mini-mental state exam and a mini-cognitive test. Afterwards he confirmed there was a memory problem and scheduled Mom for an MRI and full neurological exam. Afterwards, a family meeting was called and we all went with Mom back to the clinic to get the results and confer with the neurologist. That was the day we got “the diagnosis.”

I’ve heard many people refer to the five stages of loss and grief after hearing the diagnosis of “dementia of the Alzheimer’s type” and I can understand why they make this reference. That first step is denial, and I think I certainly was in denial when the signs of memory loss first began to show, and I know Mom was in denial for a longer time, even after she was diagnosed. After the first round of testing, however, it was pretty hard to deny what was happening any longer. Even though I have reached the stage of accepting “the diagnosis” and accepting that Mom is not going to get better and that her memory and her functioning will continue to decline, I still find myself weaving in and out of the stages of anger, depression, and bargaining. Grieving is not linear. It loops back on itself over and over. Understanding that is part of acceptance. But I have learned not to grieve for what has been lost. Mom cannot cook, bake, or drive anymore. She cannot walk. Most days she cannot even talk. But she is still a complete person and she is still there. There is still much more to celebrate than to grieve over.

On the door of Mom’s bedroom I hung the poem “An Alzheimer’s Request” (also known by the first line of the poem “Do not ask me to remember”). At the bottom it says it was written by an unknown author. So to whoever wrote it I must apologize for changing one of the lines. The Last four lines of the poem read, “Just remember that I need you, / That the best of me is gone, / Please don’t fail to stand beside me, / Love me ’til my life is done.” I changed it so it reads “the best of me is not gone” because I believe that even though this disease has taken many things from her, the best of my Mom is still there. She has not been lost.

poem

The above poem was changed (in the second line of the last stanza the word “not” was added) to reflect my belief that even though dementia and Alzheimer’s disease takes a lot away from a person, the best of that person is never lost.

About Doug Seubert

My name is Doug Seubert and I live in Wisconsin (USA). I am working toward a Masters in public health, and I am the President and CEO of a new non-profit organization: Marshfield Area Purple Angels. My blogs share resources, tools, and information about various public health topics, with a strong emphasis on community health education, effective health communication, and health literacy. I am also the creator of "The End of Life Survival Guide" featuring tips and resources for caregivers of a loved one near the end of life.
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