I Scream, You Scream, We All Scream for Ice Cream

Today Mother went out for her bi-weekly field trip, escorted by her private caregiver, Donna. The plan was for a quiet ride to enjoy summer foliage and an ice cream treat at Graeters. "What flavor would you like Joan? You can have any one of the flavors shown in the cases here." "I'll have chocolate," she replied. So a bowl of rich chocolate ice cream it was. Like a school-girl, Mother enjoyed her iced dessert. Loud and soft 'mmmms' could be heard in-between forced lip smacks. A lovely treat, for a lovely lady, on a beautiful summer's day.

On the trip away from Graeters, Mother began to recognize landmarks and streets that she had traveled before. Bethel Rd. was one of the paths she drove in her beloved Saturn Ion only three or four years prior. Mother's mood noticeably began to change. She asked when she was going home. She said that if she had a car, she could drive and buy her own ice cream. Donna could not give her the answers Mother wanted to hear, so she crossed her arms in angered silence as her caregiver continued to drive her back to her now permanent home at Darby Glenn.

Oh, the mood swings that Alzheimer's brings along with all of its other ugly aspects. In 90 short minutes Mother's mood had gone from content, to happy, to anger, to confusion. "No one told me that I can never go home again. Someone should have told me." Silence followed the rest of her time on the road, her jaw set. "We're here," said her caregiver, to which Mother replied, "You mean I have to live HERE the rest of my life?!" "Yes, Joan you do," her caregiver firmly, but sweetly explained to her.

Walking into Mother's facility, the sound of music clearly rang out from the Activities Center. "I like that music," Mother said, as she swayed down the hall toward the strumming of the guitar. Mother's caregiver helped her find a seat at the mini-concert, gave her a quick peck on the cheek, and walked back to her vehicle, putting the raps on yet another Friday field trip.

Like melting ice cream, Alzheimer's patients, caregivers, family members, researchers, and the medical professionals shiver at the prospects of the future around this fatal disease. Right now, there is no cure, there is no way to prevent Alzheimer's, and there's no effective treatment. So we all continue to wait out in the cold, looking at all of the flavors of questions standing before us, case by case, by case waiting for someone to take our order.

Who Stole My Blue Shoes?!!!!!!

I recently received a call from Joan's care center. Alex the receptionist has become adept at knowing my mothers quirks. This time however, she had him stumped. He started his conversation with me by saying that he had Joan at his desk and that she was worried that someone had stolen her blue shoes. Puzzled I replied that she owns four pairs of shoes, a pair of white and a pair of black tennis shoes, a pair of leopard slippers and a dress pair of Mary Jane like shoes, but no blue shoes. Alex agreed and asked me to talk to Joan to get more clues, so together we could figure out what blue shoes she was talking about.

Alzheimer's steals so many things from the person suffering from its random hits. One day the suffering person knows the name of every pet they've ever owned and another day, they can't remember the name of their best friend of the past 40 years. First it steals the memory, then dignity, then eventually life itself. A thief with a name everyone knows, but tactics and strategy that no one can anticipate. It steals our word power, then moves on to the big ticket items like taste and smell, and then ultimately removes from us our priceless memories.

After chatting with Mother for a few minutes, she frustratingly gave me the following clues:

1. You know my little blue shoes!
2. They go with me when I walk!
3. On the floor!
4. Larry made then!
5. They aren't there!
6. Oh! You know!

Then the aha! moment struck me...she's talking about the plastic skis on the base of her walker that are shaped in the form of little blue converse shoes. Larry bought them for her from the local medical supply store, knowing full well that folks would comment on how cute they are (thus stroking Mother's need for flattery.)  Somehow/someway they were no longer a part of her walker, which launched a second mystery that needed solving. I assured Mother that we would find her blue shoes and asked her to hand the phone back to the receptionist so we could begin the search.

It didn't take Alex and me long to realize that the therapy staff at Darby Glenn had removed them from her walker. You see, Mother walks around the facility all day every day. In the good weather she ventures outdoors onto the concrete patio, moving back and forth for hours. The skies on her walker had become nubs, causing the staff great concern that she might catch them on a transition strip found in every doorway, or catch on the carpet and become a fall hazard.

Wait, there is more. As Paul Harvey used to say, "The Rest of the Story." A quick chat with the physical therapist revealed that they had removed the shoes and replaced them with a newly engineered plastic ski that resists even a jack-hammer tearing it apart. They quickly realized that Joan was extremely unhappy about her blue shoes being removed. She walked in and out of the therapy room (on and off all day long) muttering, "someone stole my blue shoes." Alzheimer's patients often get stuck on one thing and repeat it over and over like a broken record. (I know because as a caregiver, it's one of the most frustrating indicators of this disease.)

But alas, a quick thinking and compassionate therapist came up with a plan - he drilled a hole in the blue shoe ski, affixed it with a screw on to the new non-destructive ski and re-attached it all to her walker. Final result? The new ski is in its proper place and allows for her safety, but when Joan looks down at the floor she sees only her blue shoes that Larry made for her. A win/win for all of us!

Butterflies are Free to Fly

About this time last year, Mother wandered into a vendor's fair being held by her nursing home. Sounds innocent enough, but the vendor was not there for the clients living at the home, but was there for the nursing home staff, i.e. nurses, aides, other helpers. The vendor was selling medical "scrubs".

One thing you must know about my mom is her history of shopping. If it was for sale, and her eye caught it, that thing, whatever it was, began its journey traveling home with Joan, in the name-brand department store bag to become a part of her personal collection. The day the vendors came to town, was no different. Walking past the display room, her eagle eye caught a black scrub, adorned with colorful butterflies, in her size. She wanted it for her own. The only problem was that the financial director at the nursing home holds her petty cash, and I had put a $20 limit on her daily spending (suffice it to say, my mother was capable of spending ten-times that amount whenever she ventured into a boutique or shopping mall.)

I received a call from the home's finance lady, telling me that Mother wanted to buy the scrub, but it was over her daily spending limit. I asked the accountant if Mother was holding the item in question. She said yes, and that she was not about to put it back on the table. With a grin on my lips, I agreed to Joan's daily cash overage - what else does she have to spend her money on these days?

This scrub has become so precious to her, that one morning when she could not find the shirt in her closet, she marched straight to the laundry room, knocked on the door and demanded from the laundress, "where is my butterfly shirt?", because they had kept it for more than 24 hours! (obviously an unrealistic request, since there are 100 residents in the nursing home who also have their clothes cleaned by the same staff member) <sarcasm added here>.

Somehow the purchase of the butterfly scrub was fortuitous. It came in mighty handy a couple of weeks ago, when Donna, her private caregiver took her to our local conservatory to see the butterfly exhibit. Mother loves flowers, gardens, waterfalls, exotic plants and especially butterflies. Our conservatory has all of this and more. And, guess what? She wore her butterfly scrub.

Still confusing to me is Joan's ability to pick out an outfit that fits the occasion. She's lost the ability to reason, recognize dates, and identify foods as Alzheimer's disease continues to ravage her mind. But, one thing she has not lost is the ability to pull it all together: the right outfit + the right venue = a priceless combination for Joan!

Our own lives are a lot like the lifecycle of a butterfly. For butterflies there are 4 stages:

1. Stage One - the egg (inside our mother's womb)
2. Stage Two - the caterpillar (now outside of our mother's womb, growing fast)
3. Stage Three - chrysalis (inside the chrysalis, there is revolutionary change)
4. Stage Four - butterfly (we earn our wings and learn to fly forever)

Elton John made famous the song, Someone Saved My Life Tonight. Some of the words are as follows:

Sweet freedom whispered in my ear
You're a butterfly
And butterflies are free to fly
Fly away, high away, bye bye

One day we will all earn our wings and fly away, high away into the arms of our Heavenly Father. Right now though, I'll continue to grow and change (sometimes revolutionary, sometimes not so much) and do the things that bring joy and encouragement to others in this life. Yes, even saying yes to a few extra dollars so that Mother can buy her precious butterfly shirt will be among my thoughtful deeds.