The Uninvited Guest: One

Yesterday. The Endocrinologist – for her diabetes.

Once we were in the exam room, I told mom I needed to step out and use the bathroom. A lie – white lie?

I was in the hall, waiting for the doctor. My timing was good, for I’d only been in the hall for about 30 seconds before he came around the corner. I walked toward him, to be away from the exam room door.

–How’s mom?
–As well as can be expected.
–I noticed her Primary Care doc added an Alzheimer’s diagnosis to her chat.
–Yes. Please don’t mention it. She’s, understandably, having a rough time dealing with it. She thinks I’m in cahoots with her doctor. So I probably won’t say much in this appointment. (I usually help answer questions, address concerns.)
—I understand. I noticed last time she was here that she seemed a lot more confused than the previous few times.

This is both sad and comforting to hear. He’s been her diabetes doctor for about a decade now. But he’s really only seen her a handful of times: twice a year for the first several years, then, over the past three or four years it’s been three times per year. Even with his limited interaction, he had noticed the change. This is sad to me. I think she would hate knowing that he’d noticed – she likes him very much. She’d be embarrassed if she knew he’d noticed a difference. Yet, it is comforting to hear – all the doubt that I feel, created by her insistence that there’s nothing wrong with her – is eased: someone outside of Julian and I has noticed a difference; someone who is a doctor has noticed.

There’s a sense of guilt that I feel comforted that he noticed.

In the exam room, mom and I were sitting directly across the room from each other. This is the usual setup in the exam rooms. Mom is in her wheelchair. The doctor sits between us – facing mom – on the exam table. He always sits on the table, rather than at the desk.

He talks directly to her, asking her the questions. This is important. Speaking over and around a person with dementia is demeaning. She’s not unaware, just forgetful – confused. But talking to her is the right thing. She’s still a part of the discussion.

Speaking over and around a person with dementia is demeaning. She’s not unaware, just forgetful – confused. But talking to her is the right thing. She’s still a part of the discussion.

It was the first appointment where I realized how much she depended on me. I’d often supplied information in her appointments, but mostly mom does the talking. Yesterday, sitting across from me, she kept looking to me for answers. The doctor kept his questions simple – mostly yes or no answers needed. My estimate: three-quarters of the questions she’d look to me for the answer. My first instinct was to say the words yes or no, but the past year has taught me to think differently. Somehow I knew that it was better for her to give the answer. So, when she glanced at me, questioningly, I’d shake or nod my head, and she’d say yes or no to the doctor’s question.

The few questions he asked that required a longer answer posed a bit more problematic. She’d look at me and somehow I knew she didn’t want me to actually answer; yet there was a need for me to answer – the adjustments to her insulin that the doctor wanted to make required that he had accurate information. This is a moment that makes me thankful that mom is hard of hearing. When she gave wrong, or jumbled answers, I softly spoke the answer. The doctor was close enough to hear me; the first time I whispered the answer he briefly glanced at me and nodded. This strange three-way conversation went on for the next few minutes: mom saying what she thought the answers were (often they weren’t too far off base), and I’d softly utter the correction, and the doctor would give a slight nod indicating he’d heard what I said.

By not answering questions for her – at least not answering loud enough to be thought of as an active participant, rather than the silent prompter whispering lines – gave me a different glance into what her reality is like.

Her world is compressed, condensed, jumbled, yet her perception is that everything is as it has always been. She was aware of the things that had happened to her like having been on Prednisone for a gout outbreak, an important fact for the doctor to know as Prednisone makes your blood sugar levels rise to very high levels. She gave the doctor her answers, and I softly spoke mine:

— I was on Prednisone for just a couple of days.
— For two weeks.
— I took two pills for two days, then one for a day or two.
— She took 2-5mg tablets for a week, then 1-5mg tablet for a week.
— I just finished taking the last one a few days ago. Saturday, I think?
— She took the last pill almost a month ago.

The reality is still there – the things she’s done, the awareness of events. The timing is what is off – a common symptom of Alzheimer’s.

Between the three of us – mom, the doctor, and I – we managed to convey the facts while keeping my mom’s dignity intact.

(This post was previously posted on my former blog; original publication date: January 7,2016)


 

The Uninvited Guest is a series of posts about Alzheimer’s disease: mostly from a caregiver’s perspective, as I can only watch my mother deal with this disease. She refuses (understandably) to discuss it, so I can’t really write about what she is or isn’t feeling. This series of posts is meant to be raw and honest – so they won’t be polished and proofed – probably only spell-checked. I want to write them while the feelings are still fresh – polishing can come at another time.

These posts will be a variety of forms: narrative essay, lists, journal entry, poem, photo with text; some will be long, others just a few words or sentences. 

Previous Posts can be found here.

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