A place where I can share interesting ideas and maybe get a few things off my chest

Archive for the ‘Alzheimers’ Category

Mother and the Dementia Paradigm Shift

(Please note: this is a lecture slide, not Mom’s scan.)



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.

 

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Gradual Rewind

A few mornings ago, I walked into the kitchen for my second cup of coffee.  Mother was sitting on the couch in the living room, saw me walk in and hollered “peep-eye!”  Since then, she’s said it a few more times as she’s come around the corner to see me in the office, or when she’s sitting in the living room or den and I walk into her view.  I mentioned it to Steve, and then had to explain to him that this is a southern or maybe just a family version of “peek-a-boo”.

Mother has always had a great sense of playfulness and whimsy.  This new exclamation could stem from nothing more than thinking that it was a funny thing to say at the time, and continuing because our reactions are amusing.  Or it could be another indication of the Alzheimer’s Rewind.

Steve asked me when she was last evaluated.  It’s only been a few months.  I told him that unless she begins starting fires or wandering the neighborhood, we’d stay with the annual neuro work ups.

It’s weird watching your mother grow younger as she grows older.

Stages of Alzheimers

The Alzheimers Association lists 7 stages of the disease.

Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline

Mom seems to be mostly in Stage 4:

Stage 4:
Moderate cognitive decline
(Mild or early-stage Alzheimer’s disease)

At this point, a careful medical interview should be able to detect clear-cut symptoms in several areas:

  • Forgetfulness of recent events
  • Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s
  • Greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances
  • Forgetfulness about one’s own personal history
  • Becoming moody or withdrawn, especially in socially or mentally challenging situations 

but perhaps moving into the beginnings of Stage 5:

  Stage 5: Moderately severe cognitive decline
(Moderate or mid-stage Alzheimer’s disease)

Gaps in memory and thinking are noticeable, and individuals begin to need help with day-to-day activities. At this stage, those with Alzheimer’s may:

  • Be unable to recall their own address or telephone number or the high school or college from which they graduated
  • Become confused about where they are or what day it is
  • Have trouble with less challenging mental arithmetic; such as counting backward from 40 by subtracting 4s or from 20 by 2s
  • Need help choosing proper clothing for the season or the occasion
  • Still remember significant details about themselves and their family
  • Still require no assistance with eating or using the toilet 

Most of the time, it’s not a big deal.  She goes to the Dunedin Day Center three times a week, which she just loves.  Edna, her home health aide, comes on Thursdays for her shower.  We go to Felix’s Hair We Are every 6-7 weeks for our haircuts, grocery shopping every other week, to the drugstore monthly.  She’s always cheerful and pleasant and easy-going.

But every once in awhile, something comes up that reinforces for me that even though the decline is very gradual, it is still there.

We went to a local restaurant for Thanksgiving dinner and had to park one small parking lot over  due to the crowd.  When we left, the walk from inside the restaurant, around the line of people still waiting outside, and maybe 40 yards on to our car had Mother so winded that she had to lean heavy on my arm the last few feet, and she huffed and wheezed half the way home.  It has nothing to do with her lung function, and everything to do with the fact that she not only watches TV every waking moment she’s not at the senior center, but that she lies down on the couch to do it.  She is so very sedentary that any amount of walking seriously tires her.

After going out to dinner for her birthday, we stopped at the drugstore to pick up one of her medications that was waiting.  Since the pharmacy is in the rear of the store, she has to walk more than she would like and more than she is used to.  After picking up her meds and returning to the front of the store, we had to wait a moment for Steve to check out at the front register.  Since Mom was tired, she wanted to sit down, but there was no chair or bench.  So, she sat down on a stack of cases of plastic water bottles in a display at the front of the store, with no idea that this was not good plan or a safety issue.  I told her she couldn’t sit there, and she couldn’t understand why not, and I had to insist that she stand while she was insisting that she was tired and needed to sit.  And, since Mom is very hard of hearing, this conversation was carried out at a volume to allow everyone in the store to listen in.


When we got home, I talked to her about it again, and explained that the water bottles could have fallen, then she would have fallen, then they would have fallen on top of her, and she needed to agree that in the future she would only sit on things that were chairs or benches.  She agreed, but she seemed amused by it and I don’t think she really understood my concern or why I was making such a big deal about it.



Bathtime Blues

I got Mom’s shower all set up. My boss came to the house and installed the new shower head. I got the shower curtain and liner up, the non-slip stickers in the bottom of the tub, the new shower chair and the bolt-on handle to assist with stepping into and out of the tub also installed. Tuesday evening I get home and ask Mom if she wants to go give it a try.

“No, I don’t. I don’t want my hair to be wet when I go to bed.”

“Mom, your hair will have plenty of time to dry in the three hours before bedtime.”

“Well, I just don’t want to.”

“When will you want to?”

“Soon.”

“Soon is not a time, Mom. If you’re going to shower before our company arrives this weekend, and you don’t want to do it tonight, it will have to be either Wednesday or Thursday.”

“Ok. Thursday, then.”

Wednesday morning before her doctor’s appointment, I try to show her how to use the handheld shower head, thinking she might try a shower before going to the doctor.

“I’m not going to use it without you here!”

“Do you want me to come home from work a little early so I’ll be here for you to shower before your appointment?”

“No. I’d really prefer a tub bath.”

“If you prefer a tub bath, why have you not taken one since we moved in here last July?”

“I don’t know.”

“If we don’t do this in the next few days, I’m going to be bringing someone in the help you in the bath.”

“Oh, Ok”, Mom laughingly replies.

“I’m serious, Mom.”

*sigh*

Now my brain hurts.

I walked with Leslie Sansone again this morning. Mother shuffled a few steps, did a couple of sidesteps, and then sat down. I told her that was better than she did a couple of days ago, and that she’d build up to doing more if she kept at it. She seemed doubtful.

At dinner, I brought the Dietert Center schedule to the dining table for us to choose what day we wanted to go to lunch. She couldn’t decide which one sounded most appealing, so I chose Tuesday’s “Crabby Cakes” for our lunch out.

I talked to her a little bit about the Take Five Club, which is actually a caregivers’ respite program. It runs from 10 a.m. to 2 p.m. and includes lunch brought into the activity room because some of the people are less ambulatory than others. It also costs $35 per day attended, which Mother would NEVER agree to, but they could send the monthly statement to my work. I am thinking this might be the best way to introduce her to the center, as she seems absolutely uninterested in attending any of the activities.

“Mom, when I picked up the menu last week, I talked to one of the ladies about the Playing with Paint class. She said it’s watercolor and pretty fun.”

“OK.”

“Is that something you’d be interested in trying?”

“I’m not interested in any of that stuff.”

“But Mom, I’m concerned about you just sitting at home all day and not doing anything but watching TV.”

“Well, when you’re 80 years old, you’re not interested in doing that much.”

“You’re not 80, you’re only 78, and Papaw walked until he was 92. And you had friends in Wills Point, and now you don’t talk to anybody except me all day, and when I can’t come home for lunch, then you’re here the whole day alone.”

“That’s OK.”

“No, Mom, it’s not OK.”

“Yes, it is.”

“No, it’s not.”

“And I can call people on the phone.”

“Who do you call?”

(Thinks a minute.) “Whoever.”

“Whoever is not a person. Give me a name.”

“I don’t know.”

“I know you’ve called Charlie. Anyone else?”

“I don’t know.”

“I’d really like you to try this Take Five Club. It’s more of a social group than an activity group. They talk and have coffee and have lunch. I can go with you the first couple of times.”

No answer.

“Anyway, Mom, we’ll go to the center for lunch on Tuesday.”

“Ok.”

*sigh*

I dunno. Maybe I’m rushing things. Maybe I’m not pushing her enough. I have no idea how to treat an adult who is functioning on various levels, all of them below where she was even one year ago. Especially when that adult also happens to be my mother.

Renewed Hope for the Dietert Center

Every morning, as we sit having coffee and reading the morning paper, Mother will say, “You have your regular schedule today? You’ll be home at regular time? And you’ll come home at lunchtime?”

I used to say, “Yes.” Now, because my duties at work are evolving, I say, “I hope so.”

Yesterday, shortly after this exchange, I said, “I think you ought to try going to the senior center and meet some people. I bet you could find a nice friend there.” And, instead of the automatic “No, no, I don’t want to” that I expected, she said “Do you think so?”

“Yes! I do!” I was suddenly filled with some hopes of her actually trying to do something besides sit on the couch and watch TV all day, with me her only source of social contact. I was able to come home for lunch, have a ‘delicious sandwich’, as we do every day, and then, on the back to work, I took the long way around to stop by the Dietert Center and pick up their monthly menu and activity schedule.

I stopped in to talk with my friend, Dawn, who told me that in addition to the regular activities, staff was working on having a “coffee social” time in the morning, but they weren’t sure when that would happen.

I don’t know if Mother’s total disinterest in any of the activities has been due to some level of depression from my sister’s passing and the move from east Texas, or if she is concerned about trying something new that will shed unwanted attention on growing cognitive deficits. I am now hoping that it was more the former. While I doubt that she will ever sign up for Table Tennis or Western Philosophy, perhaps Playing with Paint or Quilter’s Co-op will strike her fancy. I really believe that if she will just go there enough times to meet a couple of people, I’ll be taking her on a regular basis.

And, this morning, since I woke up at 5:30 and have what I hope to be PLENTY of time, I’m going to see if I can get her to agree to “Walking with Leslie Sansone” (which my niece, Vickie, highly recommended and I bought several months ago, but haven’t been motivated enough to try) before the television is tuned to the morning news. (I know you were wondering when I would get to why in the world that picture was there, especially on MY blog – hahahaha!)

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