Me: Okay, Mom! We’re through with our Saturday errands. What do you want to have for lunch? Mexican? Chinese? A sandwich?
Mom: I’ll just decided when I look at the menu.
Me: But if we want Mexican or Chinese we have to decide to go to that restaurant.
Mom: I don’t care. Anything’s fine.
(After our arrival at Daddy’s Grill)
Me: Oh, good – we can choose between the breakfast or lunch menus. I think I’m going to have breakfast. What about you?
Mom: Do they have Mexican food?
Source: Journal of Clinical Neurology
This past Tuesday, Mother and I headed over to USF for her first-ever MRI. She did wonderfully, and they got very good images, which they then handed to us on a CD to carry to our later appointment at the Byrd Alzheimer’s Institute. After a nice lunch at Panera, we were able to make our noon appointment with Dr. Fargher with 10 minutes to spare.
While I waited in the lobby, Dr. Fargher escorted Mother back for an MMSE and evaluation. Afterward, it was my turn in the doctor’s office to talk about the results. Mother scored higher on the MMSE this time than she did when we visited two years ago. This does not usually happen. What made the biggest difference was one item that last time Mother didn’t even try, saying “I can’t”, that this time she attempted and got 4 out of 5 points for. I told Dr. Fargher that when we had visited before, Mother had only just started going to the Neighborly Care Network senior center, and for the past 1.5 years or so, she has been attending three days per week.
With the report Dr. Fargher had received from the imaging lab, and the CD I had in hand, we looked at the brain images together which showed some overall shrinkage (not uncommon given Mom’s age), very little shrinkage in the areas of the brain normally connected with Alzheimer’s, and a couple of spots indicating small strokes (ischemic incidents, for you medically-oriented family members). This indicates that most of Mother’s dementia is actually vascular in origin.
We also talked about Mom’s hearing loss, and the doctor mentioned that she had to resort to using a pen and paper to clarify some of the questions, and Mother was able to easily understand and answer, even doing fairly well on remembering a set of three words, after they were written down. The doctor suggested we keep a whiteboard handy at home for times when Steve or I didn’t feel like we were getting an idea across. We decided that Mother’s current meds were all good, and that there was no reason to set up regular appointments, but to call if any additional problems arose.
This really changes everything!
The length of time from diagnosis of Alzheimer’s to death is usually 3-7 years, depending on what stage the person is when evaluated. Since Mom’s initial diagnosis for Alzheimer’s-type Dementia back in 2007 (no MRI done at that time), I’ve been worrying about how I would handle her inevitable decline, starting with having to work part-time so I’d be home with her anytime she wasn’t at the senior center, and of not being able to leave her alone even for short periods of time. I’ve been waiting for the horrible eventuality of Mom deteriorating into some mere shell of herself, not remembering anything or recognizing anyone.
For vascular dementia, if the stroke risk is addressed, then relatively normal functioning can be maintained indefinitely. All this time, I just thought that her meds were working really well, as the decline we’ve seen is really minimal, and the memory loss patchy and not interfering that much with her daily functioning. (You don’t really need to remember what a hush puppy is in order to fix yourself a sandwich for lunch.)
With the realization that a lot of Mom’s seeming inability to grasp what we’re telling her is probably directly linked to her hearing loss, my falling-off-to-sleep self wondered last night about the possibility of us all learning some basic sign language. I already know how to sign “thank you” and “good morning” – maybe Mom and I will start working on that today.
Mom: You said yesterday that today is your twentieth wedding anniversary?
Me: No, Mom. Steve and I got married a year ago. We’ve only been married for one year. Remember we had the wedding last year?
Mom: So, it’s not your anniversary?
Me: Yes, today is our anniversary, but our one-year anniversary.
Mom: Oh, okay. Happy anniversary!
We’ve made some progress, and I’ve got other things in the works that she is as yet unaware of. This past week, she had an appointment with the podiatrist, who said that her feet were very healthy, just needing a little extra attention due to her age, and then he recommended a specific style of SAS shoes. And since SAS stands for San Antonio Shoes, and we are only one hour from San Antonio, we should be able to pick those up this weekend.
Next week, we return to the internist for what I have told her is a medication check, but actually we are going to be getting a referral for a neuropsych evaluation so we might have a definitive diagnosis and baseline information.
After that, I’ll be setting up appointments with the dentist, the optometrist, and a bone density scan. With each appointment, I anticipate the same conversation.
“Mom, I need to set up your appointment for (insert current concern here).”
“I don’t need an appointment for (current concern)!”
“Yes, you do.”
“My (current concern) is just fine!”
“I’m making the appointment for next week.”
I’m not sure how I’m going to explain what the neuropsych eval is all about. I don’t want to hurt her feelings, but we have seen some decline just in the time she has been here.
“What’s Good Friday?”
I was quiet for a moment, because I was somewhat shocked by the question, and then debating how to answer and it what detail. “It’s the Friday before Easter.”
“Oh. The Dietert Center is going to be closed on Good Friday.”
“Well, that’s not a problem for us, because you go there on Mondays.”
“That’s right.”
I borrowed a copy of The 36-Hour Day from the Take Five lending library. It’s about being the caregiver for someone with dementia. It’s taken me awhile to start reading it, but even just the few chapters I’ve read have helped my mindset. What I read last night talked about how difficult it can be to perform multi-step tasks because there’s so much to remember, and things like cooking, cleaning, or even taking a bath can be confusing when one can no longer remember which steps, in which order, are necessary to the task.
So, I have a better understanding of Mother’s lack of initiative in helping with the cooking or cleaning. In a strange kitchen, she doesn’t know where anything is or where anything goes, compounded by the fact that she doesn’t really remember how to cook anymore. I guess that’s better than me having to worry about her burning the house down.
The book also talks about all the behaviors that are part of the dementia process, and how if family members are unaware, they might believe their loved one is just being lazy or stubborn or mean. I saw Mom in several of the examples, giving me additional insight into this process. She has always been fearful of unfamiliar situations, especially if they challenged her skillsets, and her increasing forgetfulness exacerbates these fears. I’m glad now that she voluntarily gave up driving.
I am still attending the Kerrville Writer’s Association meetings, although I haven’t actually written anything in several weeks. I have also bought studio time at the Hill Country Arts Foundation, which is a wonderful artists’ cooperative, and I have been there a couple of times to play with clay. I’ve found that Mother is less anxious with my being gone in the evening if I am able to make it home for dinner before going out.
So, I’m slowly exchanging resentment for understanding. I know I have been doing the things I need to do. Now I am working on doing them with the right spirit.
Soapbox By Kay 
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