Spencer's Mom

Except a kernel of wheat fall into the ground and die, it abideth alone: but if it die, it bringeth forth much fruit.

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May 13, 2014

The Mom Switch

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Mother’s Day

I rounded the corner from the elevator and scanned the small room. Why do all little old ladies seem to look alike? I thought. Then I heard my brother say, “There she is! Hi mom! “

I followed his eyes, his wide grin as he moved towards the corner of the little room. There sat my mother, the windows pouring sunlight across her lap, and in her arms, clutched to her chest, was a baby doll. It was a very real looking doll, maybe the size of a three month old infant, swaddled in a flannel blanket and she was gently rocking, now looking at my brother, smiling, but still rocking.

“Hey mom,” I said, but softly, as if I might wake the doll.

The other women were mostly disinterested in our entrance. They stared off, slumped in their wheel chairs like broken marionettes. Some smiled, some did not. The dementia unit, with only eleven beds, is actually co-ed, but in the five years my mom has been there, I have only seen one man. Curious.

My mother does not know me anymore; she can’t think in terms of, There’s my daughter Robin. But I suspect, watching her mother hands move over her doll, adjusting the receiving blanket, then patting her ever so lightly on the back, that the Mom switch is still intact, and that she knows on some deep guttural level that I am someone familiar and safe.

If you ask my granddaughter, Olive, what she wants to be when she grows up, she’ll say without hesitation A Mommy. That a four year old, (today actually) is also wired to hold, rock, feed, burp and dress a baby is just as amazing to me as my mother’s behavior. God made us to be moms. Mysterious.

To me, and to many other women, the Mother-Daughter relationship is fraught with complex, maze-like emotions. We’ve always loved each other, definitely did not always like each other; certainly never understood each other. I’m glad, again, that the Bible makes it so simple. Honor your mother and father. Not because they were stellar or even good enough. Maybe they were awful. It doesn’t matter. You can still honor them just like you can forgive them. It’s positional, not really emotional. And the older I get, recognizing so many of my own inadequacies, the easier it becomes. There should be honor, and lots of grace, for the hardest job on earth.

My brother and I wheeled her downstairs to a Victorian-esque living room with high ceilings and dark panels crowded with paintings of British queens, and after parking her next to us, we talked and laughed and goofed around like we’ve done for more than 50 years. I can comfortably regress around my siblings. Mom had a tissue and began wiping the fingers of her baby with great attention, one by one, looking up when we laughed too loud with a little half-smile, then continuing her work. Then I watched as she bent down and kissed each little finger, ever so gently. I’m fascinated by this and I cant help but think I don’t think she ever did that with us, or her grandchildren. But maybe she wanted to.

My mom has vascular dementia, which means the vessels criss-crossing her brain are letting go; some are microscopic, like frail gossamer strands that just weaken and collapse. Then two major arteries in the front of her brain dramatically burst within two years of each other.

The frontal lobe is the vault for judgment, reasoning, memory and speech. It’s also where we record social restraint. All that is gone now. So the New Mom we’ve noticed, and frankly enjoyed, over the last five years is more tender, warm and playful. The guarded reserve, the fear and self-doubt…gone.

In Lauren Kessler’s book, Dancing With Rose, she describes an Alzheimer’s unit she works in as an aide. They actually have a “nursery”, with a baby-doll for each woman, and after lunch, they are led to the nursery where they each pick up their baby, with blankets and clothes. These ladies are severely demented but they each know which baby is theirs. That’s how my mom got her own baby. She started kidnapping another woman’s baby on her floor and because she could walk then, she’d run off with it and stash it in her room. Not cool Mommy.

Sometimes when I walk past the Pediatric Unit at work I can hear the scream of a newborn that is addicted to opiates. It’s a very distinct, heart-wrenching cry and they hire “rockers” just to hold these babies that have had such a really rotten start to life. Too bad we can’t join the Wanting-to-Hold like the ladies on my mom’s dementia unit with the Need-Too-Be-Held drug addicted babies. It’s not practical. When my granddaughter gets distracted or bored with her babies she just drops them on the floor and moves on. And I’m afraid my mom would do the same.

We wheeled her back to her floor after about a half an hour. I don’t know what goes on in her head, but I think the doll was more interesting to her than her big not-as-cute kids. I like to think that she can love without fear or restraint now, that it’s safe, much like how Olive can love her babies. She mothered five children, lost one at age nine, which confirmed what she feared most, I can’t do this!. The first time I handed her Spencer as an infant, she held him at arms length, then placed him on her knees, at a distance. I was confused and hurt. Now I know she was just scared.

Loving is risky business. My mom loved me enough and the very best she could. But sometimes it’s just wanting to hold, and rock and hold some more, and she can do this. I like to think of her now, with her hands that remember, wrapping that baby-doll snug in her blanket and kissing her so tenderly good-night.

 

Filed Under: Dementia Tagged: baby, dementia, doll
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August 29, 2013

The Incredible Invisible Shrinking Ama

Did she fall or is she doing the plank???

Did she fall or is she doing the plank???

“Ama, are you shrinking?”

The question was posed by my five year old granddaughter, and it made me stumble a bit at first. Could you tell? Was it THAT noticeable? When I mentioned our conversation to my son, he tried to comfort me by saying that she had been asking everyone that lately, even he, her dad. Hmmmm…okay maybe I was being over-sensitive.

But the truth is I’ve been thinking a lot about the aging process lately. I have two geriatric pets that I have raised from their infancy. With animals, it’s like watching time-lapse photography; the playful puppy, the kitten doing flips, then they finally calm down, then they get decrepit and die. Rosie is almost 12, Stella, my cat, is 15 maybe 16. She looks like one of those ancient relics in a nursing home that’s always shouting, “Can I go back to bed now?” She is always either on her way to a nap, or her dish of food, which takes a long time to eat. I am afraid to look. She might not have that many teeth.

I take care of a lot of elderly people at work. They are slow at everything. It’s God’s way of showing me how difficult and impatient I am. And lately I’ve been wondering how long it will be before I become slow and unsure. I’m at an odd age; fifty seven to be exact, or fifty seven and a half if I was in first grade. My handsome husband, who is physically in better shape than me, turns sixty next week. You absolutely MUST have a good sense of humor to round this corner.

We are both shrinking. They say it’s the soft little pillows between your vertebrae that loose their bounce. All those years of being upright take a toll on you…forget about drugs and alcohol. So you shrink. I shrank two inches last year. That means there is less space to hold your stomach in, so I’ve really been looking at elastic waistbands and I think I’m all in. I’ve always gone for comfort so most of my wardrobe won’t require a lot of adjustment. But you do want to avoid looking like Stella.

“Can I go back to bed now?”

Another distinct quality of this past middle-age but not ancient yet age is we seem to be invisible. When you are really old, you can be adorable, “cute”. Even in a cantankerous way. But we are not cute in our fifties or even sixties. We are the ladies that don’t know what to do with our hair and wear ill-fitting clothes that are too tight or too loose and maybe too much jewelry to offset the clothes and too much makeup to off set the face. And the men that wear baseball caps to hide the bald head and leather jackets that hang funny. I know, you haven’t noticed. That’s the point.

Honestly, I don’t want to be old. There are too many possibilities. As a nurse, I’ve seen them all. And it’s possible I won’t be cute, although I know Jesus will help me to at least not be mean and angry. I don’t like to think of myself as vain, but the vision of fumbling for change in my purse while a line forms behind me at the check-out, or clutching my Lifeline while I battle crawl across my living room floor…no thanks.

CB and I have vowed to grow old together and to try to keep laughing. So far it’s working. And we still ride bikes, swim and hike and I go the gym… occasionally. So I’d say we are not fumbling for change tomorrow. But the next time I shop for pants I might try on some with those elastic waistbands.

I told Brooklynn that, Yes, I was indeed shrinking. I told her that someday she could hold me in the palm of her hand, and even put me in her pocket when we go places. She stared off for a moment with a winsome smile, picturing her grandmother in her jacket pocket; going to museums and playgrounds and maybe even to school together. And I could tell, at least according to Brooklynn, I would be really cute.

For now, that’s good enough for me. I end with this quote, familiar to me until I read it all. I love the last part.

“Grow old along with me! The best is yet to be, the last of life, for which the first was made. Our times are in his hand who saith, ‘A whole I planned, youth shows but half; Trust God: See all, nor be afraid!”   Robert Browning

Filed Under: Dementia, Hope, Random, Women Tagged: elderly, plank, robert browning
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July 16, 2013

My Other Life

Do I even wear glasses?

Do I even wear glasses?

*****Guest blogger and big brother Bob Gulian agreed to help me out this week. He’s been doing that (helping me out ) for many, many years. If you read the last blog about my six week stay in a nuthouse, I failed to mention that this guy drove through midtown Manhattan rush-hour traffic every day to visit his sad and mostly silent little sister. He’s held my hand through a lot. But mostly he just makes me laugh. So when I got the call that he “might have” had a stroke, I felt my world start to crumble.  He’s OK as you can tell from this photo taken today. And he also learned to be nice to the nurses. Love you Bob!

My Other Life

My sister said, “Why don’t you write another guest blog?” Okay, last year went fine. I started out thinking this time I’d write about how mean I’ve been. I’m not sure I had a point. Then I actually did write a whole blog entry about how all my children are Buddhists but I made the mistake of telling Laurie – my wife – about it and she, uh, disagreed with my point of view. I hadn’t even told her the controversial part.

So I’m going to write about something that happened to me two and half years ago. It was just before Christmas, December, and I was driving home after work from a job in a small startup in Port Chester, NY. Six p.m. meant it was already dark and very cold and at that time I was behind the wheel of a beat-up old 2000 Mazda. Yes, okay, I’m still driving it today. I was halfway home on Interstate 684 when I heard a bang and the car began to wobble violently. I was aware that a tire had blown out and adrenaline was injected into my bloodstream; I mean it was quite a large shot of the stuff.

Then I was parked on the shoulder…

There were flares in my trunk. I had never used one but I figured it out…

My phone was in my hand. I said something to someone…

I had the tire off. There was a donut in the trunk and then it was on…

I drove off after putting out the flare…

The thought came to me right as got back on the highway that I did not know where my phone was…

I was home.

Then the real fun began, and almost all of this is second hand as the time sequence I was experiencing was very different than those around me. I was confused about what I was doing home.

“Why am I here?” I asked. I think Laurie asked me to read something, I’m not sure why and I got out my glasses and put them on but it didn’t help. I couldn’t read.

I asked, “Do I even wear glasses?” This is the one thing I said that night, that my family has not let me forget. Whenever, now, I can’t find my glasses, I hear “Do you even wear glasses?”

Laurie asked me what year, month, or day it was. I got them all wrong. They – Laurie, my son Robin and my daughter, Nina – asked me a bunch of other questions, all of which should have been answerable by a fifth-grader and all of which I got wrong.

I was in a car going to the hospital. Laurie drove, Robin was in the front and I sat with Nina in the back. I felt pretty good. I was confused about why we were going to the hospital but I could sense the love of my children and my wife, their concern. Time jumped from some event to the next, and we were there. I was glad to see everyone, all the new faces at the ER seemed profoundly interesting. I thought the paramedics and cops and nurses were heroic and great looking. Time jumped again.

They gave me oxygen. It was cool and refreshing. Robin held my hand and was worried. I didn’t want him to worry. But it was all just perfect; it was as though I was sitting on a bank of a stream. The stream was life and it flowed by me so that I couldn’t see the whole thing but just one little patch of water at a time and then it would be gone and suddenly I’d be looking at a new spot. In small increments, I began to feel time tug at me, I began to be aware of its passing and knew I was returning to ‘normal’. I answered the year, month, day thing correctly.

It’s called Transient Global Amnesia. It happens in men and women of a certain age after extreme exertion. It is usually a one-time event and is not indicative of any underlying problems. My family thought I was having a stroke.

My mom is 84, has had at least three major strokes. Physically, she appears fine though confined to a wheelchair due to bad knees and other factors. No one knows what’s going on in her head; she has not been able to form coherent speech in almost three years.

What I fervently hope is going on in that old gray head is similar to what was happening to me on that night. I hope time jumps so much that a day is like a few seconds. I hope that she sits on the bank of that stream and is as delighted and as unconcerned with consequences as I was. I know sometimes this is happening; I see her smile as a new face appears and laugh at a funny expression. She jumps from one moment to the next and they are not connected by history. There is sadness in her at times though so I know there are differences from my experience that night but the time thing could make it so that even the sad parts float away. These are all just my hopes; there is no way to know for sure, none at all.

The experience was a gift, an opportunity to see for myself that my 59-year-long version of reality was, well, not wrong, but very limited. And if my views were not necessarily the real thing then certainly the human experience I project onto everyone else must be pretty distorted too. I want to be careful taking speculation too much further. After all, how many experiences like mine have resulted in books about visits to heaven and abduction by aliens? The element that stands out from that night, what rang out to me and punctuated my time stream was love. In that reality as in the one that I inhabit now, and I’ll go so far as to say probably in all others, human love is a constant. The presence of it, as I saw it, was a warm and pulsing beacon guiding me through strange, unchartered territory.

So, glad I got back. Glad to have some more years in this, the reality that contains these beautiful companions. Then on to the next, I guess…if I can remember where I put my glasses.

Afterward: I had left my iPhone behind, at the side of the road where I fixed the flat. I went back days later but it had snowed and the shoulder had been plowed into a solid bank. There was no sign of the phone. Three months later, I got a Facebook message from a fellow in Long Island who had found my phone on 684. The snow had melted, releasing my iPhone and this Samaritan had broken down at the same place I had. He mailed the phone back to me and would not take a dime, not even shipping charges.

The phone worked perfectly.

 

Filed Under: Dementia, Love Tagged: amnesia, global, iphone, transient
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May 5, 2013

Happy Mother At Last Day

My brother Bob and Mom

My brother Bob and Mom

I heard the text ringing through as I was at work on Sunday. I could see it was from Bob, my brother and that there was a picture attached. I quickly opened it and smiled. There was my mom, obviously outside with Bob on a beautiful spring day, and clenched in her hand was a happy yellow daffodil. Then I noticed a dandelion, in the same hand, pinched between her thumb and forefinger. Her expression was mild amusement. Bob had to have given her both flowers. I could hear her soft chuckle as he put them in her hand, the big yellow flower and the little one, maybe like he would’ve done 50 years ago as a little boy. But now mom is the child.

My mother is 84 now. I’ve been thinking of her a lot lately because Mother’s Day is coming up. When your parent has severe dementia, to the point where they no longer recognize you, or at least can’t verbalize it, you are in this strange limbo. The mom I knew has been gone for some time now. I still have sudden impulses to call her, to share something with her and within the same second I remind myself, “She’s gone.” But she’s not.

It was this time of year six years ago when I felt God telling me to go visit my mom in New York. She had moved there while in her 60’s, reeling from a cruel relationship with a man who appeared to offer security and friendship. She had returned to New York, where my brothers and sister lived, to have treatment for breast cancer. She was worn out and depressed so my brothers extricated her from the mess she was in, and moved her to an apartment with a small view of the Hudson River. She loved it, and for maybe the first time in her life, she was content to just be a mom and a grandmother and work on crossword puzzles out on her little porch.

She would drive anywhere, including Cape Cod, to see her grandkids and me, her oldest daughter. On occasion things went well, but often there was the familiar strain between us. My mother always had favorites, and rearranged our pictures on her dresser accordingly. I rarely made front row. Why did I never feel that she was happy with who I was? Or that she even saw who I was? I remember once she looked at me with a puzzled smile, and said, “Whose child are you anyway?” in that lilting South Carolina drawl that never left even after living in the north for 65 years. We were at odds, I think, from my birth. Her own mother abandoned her for Jim Beam, leaving no blueprint or instructions for motherhood. A daughter must’ve really scared her.

So it was a bit out of form for me to call her up and say, “Hey! I want to drive all the way to New York  just to be with you.” I could tell it made her nervous and skeptical. Just us? In her apartment? Yes, for Mother’s Day.

When I arrived, she was as excited as a teenager throwing a party. She had bought a refrigerator full of snacks, mostly junk food, and I think the plan was just to stay up and eat all night, a favorite pastime for everyone in my family. I don’t remember much about the night. She insisted I sleep in her bed that had “nice clean sheets!” and she curled up on her couch, content. In the morning, we drank coffee on her little porch and ate some more. She laughed easily and I was moved. She actually seemed to really like me. I mean I always knew she loved me, but the like part…

As I got ready to leave, she walked into the living room with an envelope and handed it to me, shy and awkward, explaining, “These are Kina’s letters. They’re yours now.” I sat on the couch while she quietly sat next to me and read two letters dated 1964, the year my brother Tim had died.

Kina had been her mother’s friend, and she had one child, a little girl named Betty. One Sunday afternoon, while her husband Odell, was trying to take a Sunday nap, Kina told six year old Betty to go out and play, suggesting maybe her friend across the street was home. Minutes later, their lives changed forever. Betty was struck by a car and killed right outside their home. In 1964, as my mother reeled under the same crushing grief after my brother died suddenly one beautiful July day, Kina’s words poured off the page and into her heart, bringing some measure of healing, then and throughout the years.

There, on the couch, we had finally found a common ground; two mothers, each had buried a son. Inside a pain and sorrow so deep and so complex in all of its implications, was a place of familiarity between us. And as Kina’s typewritten words that were born from the depth of her own anguish and despair came alive with hope before me, I felt as if my mother’s hands, which were always folded in her lap, were gently holding me, touching me how mothers do, and making things all right.

One week later, Bob called. Mom had had a stroke. A massive bleed in the frontal lobe of her brain left her looking totally normal, but mentally devastated.

My parents met in graduate school at Columbia University in New York City. She was not stupid. But her intellect was like a fortress that kept vigilant guard over her heart. You could never know how she felt, just what she thought. After this stroke, the walls came crashing down. And just when she was able to rebuild a little, a second stroke hit her like a tsunami and wiped it all away. She became Mom, the child.

We thought a third stroke would come around and strike her down for good. We had all said goodbye to our mother in steps. Honestly, we were glad to say goodbye to the Mom with the Intellect. Oddly, she became tender, and affectionate, laughing easily. If you were standing close to her she might reach up and tickle your belly-button. She might also eat paper napkins, or fake fruit or write on the mirror with lipstick. I found her at two in the morning feeding a large jar of strawberry jam to my pug when she stayed with me for six months. This was the new Mom.

She’s mostly quiet now. Every now and then she’ll start a sentence, then just drift off. There is no frustration, no pain, no more disappointment. I’m grateful for my brothers and sister who visit her every week. Sometimes they send me pictures, and she is always smiling. And they are always holding her hand. God has her here for His reasons alone, and they are mostly a mystery to us. But it’s nice to love this New Mom, to hug her and kiss her instead of straining under the weight of her mental jousting and elusive love. For all of the psychoanalysis and diagnosing, she never could make sense of her life. She was so smart, but a dunce at life and love. As her daughter, I am more like her than I like to admit. Yet, my Redeemer does live, and thankfully, has loads of patience.

The last time I saw my mother she said my name, but I think it was a fluke. Still, the common ground we have sown in tears will never change. I’m so very glad I listened to God and stayed that night with her, for Mother’s Day. I thought the gift was for her but it was mostly mine. As I look at the picture of her holding the two yellow flowers and the childlike expression on her soft face, I know she is nestled in my Father’s arms, and I know that one day He will gently carry her home.

My brother Graham bought mom a digital frame for her room in the nursing home a couple of years ago. We joked that we all had the same position on her dresser now. As Bob and I sat comfortably in mom’s room last month, watching the pictures of children and grandchildren and even great-grandchildren softly fading in and out on the frame, he said,

“Hey Robin, I think there’s more pictures of you in there than anyone else” and we all laughed, even mom. Maybe I can finally be her favorite…

 

 

Filed Under: Dementia, Loss Tagged: dementia, mother
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November 9, 2012

What I Learned From People Who Can’t Even Tie Their Shoes

Brooklynn and Olive shifting into gear

I snapped awake to the sound of my son’s voice calling up the stairs. “We’re leaving now, Mom.” His voice was gentle and low, but I bolted out of bed, brushed my teeth and hurried down stairs. What if the girls woke up? What if they found no one there? Would they cry when they saw me? Worse yet, would they just try to be polite but distant? Ama’s here again…that crazy old lady that flies around on big planes.

I wrapped myself in a blanket, conscious of my pajamas suddenly, and sat on the couch…waiting. It was very early but the day swarmed before me and I made mental notes of about a dozen fun things I had thought of to do with a four year old and a two year old. I was excited but already a little tense from the pace I had marked for myself. Okay, I’m a grandmother but I’m a young one. Right?

Recently, my husband and I took a trip to Acadia National Park and we made some observations. Our generation, the boomers, well there’s a lot of us. This is not news but we were shocked at how crowded Bar Harbor was and they all looked our age, maybe a little older we like to think. As we were eating our lobster lunch we watched them parade past our window. We noticed they wore comfortable shoes. We saw a few canes. Then a walker. Then a guy pushing an oxygen tank, THEN a guy pushing his wife in a wheel chair. Sorry, it’s my macabre sense of humor. It was like watching a cartoon. I expected to see a funeral procession next. Later that day we climbed a small mountain and I had to stop and catch my breath twice. CB said it really wasn’t much of a mountain but I heartily disagree. It was Everest to this granny.

So I’m not gonna let a couple little girls outpace me. I feel ready, equipped, I feel…nervous. Just then I heard the soft drumming of two little feet padding down the stairs and Olive appears, blond curls all wild and as she takes in the situation, just Ama in her pink jammies, a peculiar smile settles across her face that says; Ok, Ama’s cool. And then she accepts my invitation to snuggle in the blanket. Phew! A few minutes late another set of flying feet are heard overhead and Ollie looks at me and in a low raspy voice whispers, Bookin, a two year old-ese for Brooklynn. Her sister rounds the corner and checks us out snuggling in the blanket and decides it’s a Jammie Jamboree and then we are all snuggling and giggling and I feel something in me unwinding.

Breakfast is a bit of a free for all as I remember my Grandparent’s Right To Spoil clause, so as I sip my coffee they run back and forth from the table, chewing on bananas and last night’s pizza. They are shifting into second gear now as Ollie shows up with a dolly under her arm, sort of in a headlock and Brooklynn is spreading a picnic across the den carpet and entreating her sister to join her. But now Olive is distracted by a pile of necklaces she found and she has left the picnic and her babies behind. Soon I am invited to the picnic,and with a few groans I stretch out of the carpet and begin to partake of corn, carrots, cake, tea, and more pizza, the wooden kind. And as the picnic comes to a close I reach over to the bookcase and pull out a few of my favorites, like Barnyard Dance and Hippos Go Berserk. I think a couple of hours have ambled by and we are all still in our jams, hair messy, and thoroughly loving the day. These girls are showing me something.

Five years ago my mom had her first stroke, then another a year and a half later. Both were caused by an artery rupturing in the frontal lobe of her brain. The first one mostly affected short term memory, some speech. She seemed happier and we concluded that it was because she was unable to remember what she was so sad or mad about. After she was felled by the second one, we anxiously waited by her bedside to assess the damage. Neither stroke left her physically impaired. But the frontal lobe contains all the circuits for judgment, reasoning, memory, speech. My 80 year old mother woke up at about age two or three and a few weeks later I took her home with me, hoping I could help her find her brain again or maybe just a few pieces.

That winter, after a breast cancer diagnosis, I plunged into the world of chemotherapy and despite my stubborn Yankee spirit that will never lie down, never rest because I NEVER get sick, I surrendered to my body’s cyclical deterioration as the poison that was hopefully killing the bad cells, killed a bunch of good ones too. Mom was happily oblivious. She frowned at my bald head like she would’ve when I wore a skirt too short and the word cancer held no meaning for her. Just once I saw a look of worry cross her face and she brought her hand up to my cheek and held it there like when I was a child.

“You all right, Bird?” Yes, mom, I’m alright.

And it was there in that cycle of sickness with the simple company of my demented mother that I realized life has more than one rhythm, that as Proverbs 16:9 says, “A man’s heart plans his way but the Lord directs his steps.” We rode out the winter together, sometimes the sea raged but mostly it was a subtle breeze and the rhythm of the gentle waves as we held on together, secure in His everlasting arms.

It makes sense that Jesus admonished us to be as little children. Brooklynn, Olive and I eventually got out the door but once I relaxed and slipped into their rhythm , even getting dressed was fun. I got lost trying to find Monkey Joe’s but Brooklynn confidently told me Ama, I think I can help you get home. OK I don’t need a walker yet but is it OK to use a four year old for your GPS? We did find our way, and as I looked into the rear-view mirror at two sweet faces fast asleep, their expressions pure and unworried, I thought Thank you both for reminding your Ama how to live today and thanks, Jesus , for leading the way. Oh and one last mental note: naps are good, for everyone.

 

Filed Under: Dementia Tagged: dementia, girls, grandmother
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