Mother and the Dementia Paradigm Shift

(Please note: this is a stock photo, 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.

Art by Mother

Three mornings per week, a van or car comes to our house and picks Mother up to take her to the Dunedin Day Center. They sing songs, read the paper, play Bingo (sometimes Mother brings me the packages of cookies she's won), and lots of other activities, including breakfast, lunch, and a mid-afternoon snack before she comes back home in the afternoon.


Sometimes she brings home artwork that she's done. Some projects are more impressive than others. Below is one of the first things she brought home and taped to the living room wall.

Soon after, this appeared below it.

Later, this painting appeared, and I was actually quite impressed.

Then came Christmas arts and crafts. (She won the candy jar by being the most accurate guesser of the number of candy canes it held.)

Several more paintings came home, and I was getting quite excited about Mother's previously hidden artistic talent until she told me that the canvases had pencil drawings they then painted.  Still, she seemed to have a good sense of color and blending, and I've purchased inexpensive frames to showcase the growing art collection. When they're all framed, I'll be able to replace the Easter basket she's taped up in the dining room.

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.

Conversation

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!

T-Shirt Contretemps

Mother has a t-shirt from her old job.  A comfy, tan, heavy cotton t-shirt with a slogan from some past customer service-oriented advertising campaign.  She likes it .  She likes to wear it.  She likes to wear it often.  She likes to wear it repeatedly.  She does not, however, like to do laundry.  So, her favorite comfy shirt gets worn several times before I realize that I've seen it many more times than I've seen her do laundry (more on that later), and I feel compelled to comment.

"Mom, you've worn that shirt four or five times already.  It needs to be washed," I point out.

"It's fine," she replies.

"Mom, you've worn it the last three times you've gone to the senior center.  They'll think you don't have any other clothes. Also, you need to wash it before you wear it again."  I stop short of ordering her to go change.  She wouldn't anyway, not without what I anticipate would be a really big battle - I'm not sure because I haven't pushed that hard yet.

"Okay," she says, in that voice and tone that I recognize immediately as meaning, 'I'm agreeing with you so you will stop talking at me about this.'  So that's where I get it.  Hmmm.

Yesterday morning was at least the third time we've had this conversation.  My husband overhears and says I should make her change, or tell her the shirt will go away, but I'm not ready to be that much of an authoritarian for anyone, especially not my mother.  I do have to agree with him on his point that it is not only a matter of esthetics, but also a health issue.  *sigh*

So, I phone the senior center and have a chat with the social worker.  She says to take the shirt and put it in the laundry, telling Mother it is no longer available as it needs washing and is in the laundry.  Great plan - except that that still makes me the de facto laundress because Mother doesn't do laundry unless/until I go into her closet and pull out all the clothing that she has already worn and rehung and announce that it is Mom's Laundry Day.  I don't want to do this.  I am still trying to figure out how to get out of doing my own laundry.  (No luck so far on that one, either.)  *sigh*

I do have a Plan B, though.  It won't get me out of my laundry duties, but it might reduce their frequency a little.  I call Mom's old job.  I speak to the manager.  I explain to him a little bit of the situation, and how I attribute her fondness for the shirt to a combination of its inherent comfiness and the fond memories Mom has of working there for twenty-plus years.  Is there any way, I ask him, I can get a couple more employee t-shirts for her.  He transfers me back to the office manager, instructing me to tell her what size and how many I want.  Hooray!  The office manager also remembers Mom, and in addition to the three new t-shirts - one yellow, one orange, and one green - she will be including notes from current employees who also remember Mom from her time there.  She starts to address the package to me, but I suggest addressing it directly to Mom so she will open it immediately and have a nice surprise.

I hope it arrives today.

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.

Mixed Success

I just walked a mile in my living room in 18 minutes!

Mother walked about 2 minutes, then said she was tired and sat back down.

*sigh*

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!)

$5 Fair Admission

Mother and I went to the grocery store on Thursday evening, since I had been out of town all weekend and into the middle of the week. We say the sign for the Kerr County Fair, and Mother said, "The Fair is this weekend, but I won't be going."

I asked if she would like to go. She asked if I would like to go. I said I would. She asked the cost of admission - $5. She said she'd go if I wanted to go. And so it goes.

The Kerr County Fair ran this weekend from Friday through Sunday, but the best time for us seemed to be Saturday afternoon, after I got home from my weekend job at the local youth shelter. It was at the Kerr Co. Ag Barn, on Hwy. 27, and though I wasn't sure just where it was, I figured we would know it when we saw it. And so we did. We pulled into the entry gate, drove past the mini-ferris wheel and tilt-a-whirl, into a large field partitioned off for parking. We found a place not too far from the entrance booth (after we realized all the most readily available parking spots were designated for handicapped drivers), and Mom paid the $10 for both of us to get in.

There were a few vendors outside the main tent area, but we saw the sign that said "Petting Zoo" and proceeded inside. We found the requisite baby sheep and baby goats milling around with their dams, trying to avoid the cups of farm animal kibble being forced upon them by small children, and decided not to actually venture into the fray. After a minute or two of standing near the 5-ft fence, I notice there was a smaller enclosure within the main one, containing a lop-eared rabbit, a pot-bellied pig, and what appeared to be a miniature kangaroo. Something in the back of my mind whispered wallaby, and I told Mother that's what I thought it was, but that voice is not always reliable, so I asked the woman selling kibble cups. She confirmed that it was, indeed, a wallaby! (I felt so smart!)

We also noticed that there was a camel! How could we have missed a camel, you ask? He was sitting down! At that point, the back of my mind whispered dromedary?, but I didn't feel like encouraging it anymore, so we're not sure on that one. We walked to the other end of the pen to get a better view, and also noticed a fawn, still with it's spots, although it seemed a little large to still have spots, and I suspect that there may have been a little milkpaint involved, although I have absolutely no proof. There was also some kind of game animal, but the little voice could only give me some kind of antelope, I think. It was becoming less and less reliable, so I decided to dismiss it for the rest of the afternoon.

We wandered into the main tent where the vendors and the performance stage were set up. There might have been 30 vendors altogether, but perhaps not quite that many. I picked up a packet from the local Democratic party that included a few pieces of candy. I asked if they had any voter's registration forms, but they said I would have to go to the second story of the county courthouse, fill one out there, and allow the county to mail it to Austin. I thought that was a little strange, but then everything here seems to be a little strange.

We passed by most of the booths, but near the stage happened upon one that was selling bright-and-shiny objects of sterling silver. I stopped to peruse them, and Mother sat in a folding chair to the side of the bleachers facing the stage. I picked out a garnet ring, an ear cuff, and a pair of dangly earrings for my daughter's belated birthday present (shhhh - don't tell her). As I was looking at the garnet rings, I realized someone was standing VERY close to me, well inside the limits of my personal-space bubble, and looked down to find my co-worker, Helen. She liked the rings I was looking at, and when I pointed out that Mother was sitting nearby, Helen joined her for a short chat while I finished my transaction. Helen told us about her daughter's prize-winning quilt in the crafts tent, and as I had been looking for something more than the vendor area, I was quite happy for us to follow her next door.

The craft area was meager, but perhaps I am jaded by all those years of having had the opportunity to attend the great State Fair of Texas. In any case, we looked over all the submissions in painting, photography, woodworking, mixed media, baking, canning, and some other items whose categories were difficult to discern. This took approximately 10 minutes. We did find Helen's daughter's quilt, which was sporting a Best of Show ribbon for the youth category. It was very nicely done, and I will have to be sure to tell her on Monday that we saw it.

I headed back to the first large tent and Mother asked if we were leaving. I told her that I wanted to be sure that we got our $5 worth. She commented drily that we could walk around the entire evening and still not get our $5 worth. I could only laugh, because it was oh, so true, and yet I had enjoyed myself so far. As we entered the main tent, my ears were rudely assaulted and I realized the stage was once again being used for karaoke. We wended our way to the front of the tent, past the food vendors and headed for the parking lot. Mother declined my suggestions for caramel apples, cotton candy, and kettle corn.

Much to my amazement and delight, we passed a vendor selling chocolate-dipped frozen bananas on a stick! I love these! At one point in time, you could walk into almost any Dairy Queen in North Texas and acquire one for as little as 50 cents. Alas, no longer. As best I understand it, almost every DQ in North Texas (perhaps in the entire state) has been purchased by an evil consortium that sanctions the sale of only those frozen treat items trademarked by the Dairy Queen franchise. Since they cannot really trademark a frozen chocolate-dipped banana on a stick, it is no longer allowed. *sigh* BUT - there he was! The frozen chocolate-dipped banana vendor! The photo on the side of the booth showed the banana dipped in chocolate and rolled in chopped nuts, but I am a minimalist when it comes to my frozen chocolate-dipped bananas. As the bananas were only dipped in chocolate once requested, I was able to acquire mine as desired. I chatted up the vendor in the hopes he might be able to direct me to a more reliable source, but he said he didn't know of one, although I could find him at other local county fairs. *SIGH*

My future prospects of acquiring frozen chocolate-dipped bananas did not look good, but at least I did have the one in hand. Mother did not care for one(!!??), so after I got mine, we continued towards the parking field and the car. My frozen chocolate-dipped banana was gone before we got home, but it was very nice while it lasted. And so was the Kerr County Fair.

Life with Mother - Changes

Shortly after I moved to Kerrville, my niece, Vickie, and I began planning to move Mother down here as well. She had lived alone, the past 18 years, in east Texas on 11 acres that Dad bought for his retirement. When Dad died just before his 67th birthday, Mother stayed out there, working at the local grocery store. For the last few years, my sister, Margie, lived out there with her, attending nursing school. About three years ago, Margie had at least one heart attack and/or series of strokes (we're not really sure which came first), and her health gradually declined until she passed away just before Christmas last year.

Mother decided to retire, sell her house and land, and rent an apartment in Dallas. We told her there was no place in Dallas that she would feel was affordable, that we would feel was safe. And so, after receiving my brother's blessings, she agreed to move to Kerrville to live with me.

I rented a 3/2/1 duplex on the edge of town, and my niece in Dallas, Lisa, spent every weekend for a couple of months driving to Mom's to help her pack up. On Moving Day, Lisa miraculously assembled a small army of sons, nephews, and friends, and her sister, Vickie, who lives in Kerrville, and their brother, Walter, and I all converged east of Wills Point, Texas to rent a moving van and trailer, pack Mother's house, and carry her, all her earthly belongings, and her 1983 Dodge pickup 330 miles away from where she had lived for over 20 years, her last home with Dad.

It's been an interesting adjustment for both of us. I've gone from not having a television and rarely even turning on a radio, to having a LARGE television on MAXIMUM VOLUME going from 8 a.m. to 10 p.m., seven days per week. Mother has gone from knowing her way all around her small community, to a different (and slightly larger) community where she knows nothing and no one. She starts her pickup once a week so the battery won't die, but she doesn't want to try to drive it anywhere. She's afraid she won't find her way either to where she's going or back home.

Mother makes coffee every morning, and graciously wakes me around 7 a.m. We read the newspaper together, commenting on local events and national tragedies. She keeps me apprised of select sports scores (Tiger Woods has somehow captured her imagination, although neither she nor anyone we know has ever played golf) and I tell her about local art events that are coming up, although we have yet to attend one.

I now come home for lunch every day at noon, and cook dinner every evening, something I haven't done regularly in several years. I started out washing the dishes as well, but Mother has since begun doing them during the day, so I usually just wash the pots used for cooking after I put leftover food away. I was appalled at Mother's diet (pot pies, TV dinners, and sometimes cereal for dinner), but then I realized that mine has not that much better (ramen, sardines and crackers, and sometimes vegetables with ranch dressing), so perhaps that is just the lot of single people who feel it's too much trouble to cook for just one. In any case, we are both eating better, and I am slowly rebuilding my rather atrophied culinary muscles.

Vickie tells me her grandmother looks so much better in the month since she's moved here, that her posture, balance, and overall appearance have all improved, as well as her general mood. I have noticed it, too, at least the mood part. I know she was kind of in shock after the move, as I was with so many changes in the past few months. And I suppose we both are benefiting from an improved diet. We bought a couch yesterday, which will be delivered this coming Wednesday, along with my mattress and box springs, so that we will be able to watch TV while sitting on something more comfortable than dining room chairs, and I will get to sleep on something that is neither a couch nor an inflatable mattress, for the first time in about five months.

-

Life is good.