Special Torture (or how to grin and bear it)

The Things We Know

March 2, 2020 / by admin

My mom started showing signs of dementia right around the time my kid was born. Maybe even before. That was six years ago. I took her to see her first neurologist 5 years ago. We were sent home with the advice that my mom should exercise more. “There was nothing to be done,” they told us. I know now, of course, that they could have medicated her and that could potentially have slowed her dementia’s progress. It’s frustrating to think about that. It’s embarrassing to admit that for much of that time I could not even bring myself to use the word “dementia”. I thought that since no doctor was saying it, that there was some flavor of normal aging-related memory loss that was just that – memory loss, no more, no less and that “dementia” was something else entirely. Dementia was something doctors would recognize and take steps to treat or at least diagnosis. For the first few months we lived at home it seemed like my mom was just the same forgetful self she’d been for years. When we moved in, my mom could accomplish the following :

  • She could fill her own pill holder and remember to take her twice– daily meds.
  • She would regularly bathe herself.
  • She managed to feed herself her meals and occasionally succeeded in making a meal for my dad.
  • Get dressed on her own.
  • Do limited housekeeping like cleaning and maintaining a grocery list
  • Weekly Laundry, including ironing, and changing sheets

It only took a few weeks for me to see where she was slipping. I took over the management of her medication almost immediately. Other tasks became mine as she demonstrated more and more trouble with the job or others that she simply one day stopped doing for no discernible reason. For example, she has been doing weekly laundry. It was not even on my radar as it was part of her regular routine. Then one day, about 5 months after we moved in, I realized that their hamper was over following. She had managed to do some laundry in the weeks past, but my dad admitted it has been almost two months since the sheets on their bed had been changed.

More and more she would stay in her pajamas later and later in the day. I would have to really push for her to head upstairs and get dressed. Then one day, after I had shooed her upstairs after breakfast, I was playing with Pem in our room and Mom wondered in half-dressed and said, “I don’t know what I am doing.” It was at that moment that I realized that there is no such thing as just memory loss. That single statement hit me like a thunderbolt. This was dementia.

I took her straight to her primary care and explained how things had changed. They recommended a new neurologist. After waiting what seemed like ages for her new patient appt with the new neuro, we were sent home with a prescription anti-depressant and a single drug to “slow cognitive impairment”. What we were not sent home with was a diagnosis. I was frustrated and confused. My mom could not even remember these appointments and no one had anything to say about that! 

When we were leaving the appointment with this new neuro, I asked the person at check-out a visit summary for our records, but for some crazy reason, there was not a single piece of paper available for us to take home. The receptionist gave me the card for Doc’s assistance and when we got home I emailed her and asked her to mail the summary for the visit. She did this promptly and also included the physician’s letter to my mom’s primary care. In that letter, the neuro spelled out her diagnosis of Alzheimer’s. But that word had not once been used at our appointment.

When I demanded to know why we have not to be informed of this, her neurologist and primary care doctor each blamed the other. “Oh,” they basically said, “I thought the other doctor had told you”.

Can you even imagine? “Oh! Sorry I never mentioned that cancer diagnosis” says your oncologist “I thought your primary care told you.” Yeah, like that.

I insisted that I bring my mom back in so he could deliver that diagnosis. I insisted my father join us for that appointment. I got all three of us to said appointment and the neuro talked to my mom and dad for over 5 minutes about “normal aging” before he uttered the word “Alzheimer’s’. I watched their eyes glaze over. When he was done talking at them, he asked if either of them had any questions and they both politely said “no, thank you for your time doctor”. No questions. None.

My mom received the diagnosis too late to remember the diagnosis. She still does not even really know that she is sick. She thinks her memory loss is because she is growing old. She also seems to think that if she tried harder she might remember more. That part sucks.

Recently, my mom’s primary care doc retired. I can’t say I was sad about that. When I took the steps to find a new doc, I was mindful to engage a practitioner with a specialty in geriatrics. We saw her a few weeks ago and she asked me very directly if anyone had ever really talked about the results of my mom’s MRI from 5 years ago. I said I supped they had and recounted that we were sent home without a diagnosis or any plan of action all those years ago. The new PC seemed a bit flabbergasted. She explained that my mom’s brain is riddled with strokes (They did mention this 5 years ago, but wrote it off as an HHT thing and made zero connection to her burgeoning memory loss), but that it’s entirely likely that her dementia is vascular. WHICH IS NOT EVEN ALZHEIMER’S. She went on to clarify that my mom probably suffers from mixed dementia as so many do. Nothing really changes now that we have this information. But is just another example of how poorly informed I feel like we have been.

So where are we now? I’ll start getting to that soon.

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