Stories That Inspire

SHIRLEY AND NANCY

My mom, Shirley, is 90 with Alzheimer’s disease. She is still living in the house where she grew up, thanks to the efforts of my family. My sister Nancy has a very special place in Shirley’s life. She is amazing. She works for the post office; does many extra fund raising activities, and volunteers for many different places. I swear she has 36 hours in one of her days. And so many friends I have lost count.

Yet with all that she does, she takes such special and loving care of Shirley. Each weekend, she visits and brings Shirley something special and fun. Her generosity is unsurpassed. She spends quality time with Shirley, they watch TV, talk, play a game. She will always bring her a special treat to eat. On Holidays, she brings the meals to my mom’s house, so Shirley can celebrate the day, even though she does not really know what day it is. She always makes sure the house is clean.

These are physical things. Emotionally, she is always upbeat, vivacious, smiling, and laughing along with my mom. Her presence is such a bright spot in my mom’s life. When she makes my mom laugh, the joy fills the room. Her husband is there, also, adding his special touch to the visits.
Nancy’s heart is so full of love and giving it astounds me. When she smiles and laughs, her heart opens and the caring and tenderness flow all around. From her heart straight to Shirley’s. Even with Alzheimer’s, I know that, even if my mom cannot acknowledge these feelings on a conscious level, her mind, emotions, and heart are filled to overflowing with love.

Nancy will always include Shirley in the prep of the festivities. My mom could never just sit there. So, she and Nancy will do the things together, and my mom can feel once again that she is a normal and important part of things.

My own heart is full of love and admiration for my sister: Thanks, Nancy, I love you!!

b.a.roger
Pawtucket, RI

Treasure the Core that Remains

Treasure the core of your loved one that remains, not what's lost. My wife Susan continued to show love and care for family and nurses on her deathbed this March.

A QUARTER OF AN lNCH AT A TIME (A Song for Susan)
from CAREGIVER CAROLS: A MUSICAL, EMOTIONAL MEMOIR by Don Wendorf

She moved near me in college, to the house across from mine.
I knew at once this special girl was something rare and fine.
We slowly started strolling down a path of love sublime:
A quarter of an inch at a time
A quarter of an inch at a time

Through kids, careers, through fights and fears, we formed a wedded pair,
That knew each other deeply as we learned to give and share,
Ever stronger, growing closer, like two trees entwine:
A quarter of an inch at a time
A quarter of an inch at a time

Then came a bandit in the night, to rob me of my bride,
To slowly steal away her brain and personhood inside,
To make her serve a lengthy sentence, punishing no crime:
A quarter of an inch at a time
A quarter of an inch at a time

I watch a shade be slowly drawn to darken out her will.
I see her memory erode, from mountain down to hill.
I hear my singer drift off key, my poet stray off rhyme:
A quarter of an inch at a time
A quarter of an inch at a time

This dearest soul I've ever met, so caring, sweet and kind,
So lovely on the outside with as lovely heart and mind,
Now works to hold the fabric of her self as it unwinds:
A quarter of an inch at a time
A quarter of an inch at a time

As man and wife we've walked through life, down all its winding roads,
Up craggy peak, 'cross desert bleak, we've borne each other's loads.
There's just this final mountain now, together we will climb:
A quarter of an inch at a time
A quarter of an inch at a time

Dr. Don Wendorf
Birmingham, AL

my story from mississippi

Heres my story : my mother died at the age of 70 to Alzheimer's in 2008 my dad and my 4 sisters helped him for 10 yrs. of her being home I commend my father for all the work he did to keep her home we were there but we did the easy part by keeping her company and feeding her . my dad past away 2 years after her in 2010.it was an unexpected death. my husband lost his job in 2011 and he wanted to move to a state he lived in in the 70s so thinking we have to start over we will go somewhere we want to retire in . we sold everything. we moved 1300 miles away from family In Dec 2013 he was diagnosed with mild to moderate Alzheimer's. I am now in a state that I am not familiar with laws or city been here 1 year still learning area and he can no longer work. I knew something was not right but wrote it off as stress from losing his job of 29 yrs due to plant closing then moving . but words started not coming to him and he didn't want to leave my site in fear of forgetting his words he is 56 years old .I have no support here for all my family is in a different state we call always but not the same.it is a very hard disease to understand . there's times I think its the old husband for in 2 min the whole attitude changes and he is lost for words or people faces he is nice to strangers but can be very mean to me I don't get that part I need a support group for me and him he needs friends I need a break

Anonymous
gulfport, MS

SHIRLEY AND PAT

My eldest sister Pat is one of the most selfless, loving, and kindest people I know. She retired after 35 years of teaching, anticipating that my aging parents would soon need help. My mother is 90 with Alzheimer’s. Pat was helping my dad care for her at home; he passed away 3 years ago. Wanting to have my mom finish her days in the house she grew up in, Pat arranged things so that she could.

It is a tribute to her that my mom is still living a happy life. My brother and other sisters take their turns also, but Pat is the primary caregiver. Her husband is so caring and wonderful, also!

A week for Pat and Shirley: Pat at the house, bathing, feeding; getting mom ready to go to Day Care. My mom loves day care. She interacts with others, laughs, smiles, makes crafts; takes field trips! After day care she is dropped back off at home, where my brother takes over for the night.
Knitting class day. My mother used to crochet the most beautiful afghans. Her hands were always going. I cherish them. She cannot crochet any more, but, enjoys the class all the same. Thursday is Day Care again.

Fridays Pat brings Shirley for prayer service and music at a local church; then for lunch. Pat brings her to hear the Singing Policeman, the Irish Jiggers. I thank God every day for Pat, and how well she cares for my mom.

My mom’s Alzheimer’s is such that she can still function pretty well. She doesn’t remember her fun days. We try to enjoy our time with her as much as we can.

Pat tells me stories of how sometimes she is amazed at the things Shirley will come up with. Like listening to music in the car, Shirley said, “Where is that girl that was singing last week? I like her music!” Or all of a sudden giving her directions back to the house.

Thank you, Pat, for being such a patient and loving caretaker. I am proud and honored to be your sister!

b.a. roger
Pawtucket, RI

The Question

"Why would that nurse say I needed Aricept?" my mother sobbed to me over the phone.

I remember the day. It was a cold, February morning and I was out shopping, looking for a wrap to wear for my husband's banquet later that day. My cell phone rang. Caller ID said it was my parents, who lived two hours away.

"Aimee, the doctor's office called and the nurse on the phone said she had my prescription of Aricept ready. Why would she say that? Is there something wrong with me? Do I have Alzheimer's?"

My heart sank and I felt like I was going to be sick. I had no idea how to answer her question.

"Mom, Mom, where's Dad?" I questioned.

"He went to the store. The phone rang. The nurse from the doctor's office said she had my prescription of Aricept ready. Why would she say that?" Mom said.

Growing up, my mother was highly organized. Could always tell what detail in the room was out of order from when she last saw it. Now she was constantly misplacing her glasses, purse, keys, hairbrush, etc. and they'd end up in the strangest of places. My mother was also the person who knew what every prescription name, what it was prescribed for and what side effects it could possibly have. Her own mother, my Nonna, had died from Alzheimer's just ten years earlier. Mom was Nonna's primary caregiver. Of course Mom knew what Aricept was prescribed for- Nonna had taken it years before.The damned Alzheimer's was back, but this time, for my mother.

A few months earlier I had been watching Mom at my niece's birthday party. She was surrounded by family, but she looked bewildered, confused. I knew that look. I had seen it on my Nonna's face years before. It scared me. I knew, in the pit of my stomach, what was happening to her, even before the diagnosis.

"Do I have Alzheimer's?" my Mom questioned me.

How do I answer that question, especially over the phone?

Anonymous
McKinney, TX

GRANNIE

My Grannie had ALZHEIMER'S. She was an amazing woman. My mother, myself , my sisters, brother in laws and also my nieces and nephews we all worked together to take care of her. It was a hard thing to watch and know that she really didn't remember who any of us really were besides my mom. She lost her fight to it on January 17, 2014. The doctors told when she came home from the hospital at the end of September that we would only have a couple of weeks with her but Our Grannie being the strong willed woman that she was held on until after the holidays. Which I was greatful but I was so upset with her suffering it hurt me to see her that way. When she finally passed on 1-17-2014 she had the biggest smile on her face and we all new she wasn't hurting anymore and she was with my Granddad and my Dad. We all love and miss her dearly and we have another guardian angel watching over us.. Her family she has left here have decided that we are going to do what we can to help raise awareness on the horrible beast..

Jennifer Mash

Jennifer Mash
Pasadena, TX

My Wonderful Dad

My Dad had vascular dementia and it was vicious. I watched an extremely intelligent, friendly and kind man taken from me. I cared for Dad for 14 months and I am so glad I had this time with him. While I know he is in a wonderful place with my Mom, and no longer in any pain or suffering, I have a big empty space in my heart. I lost my Dad on April 16, 2014. He was loved by many wonderful friends and family and is greatly missed.

T.C. White
Augusta, KS

92 and Still Alive and Kickin'

My grandmother is the sort of person you should meet if you are afraid to get old. She was still driving when she was 90. However, one senior moment behind the wheel too many - especially when she ended up an hour from Atlanta, which meant I had to not only retrieve her but also hire someone to fetch her car - we agreed that it was time to move her into senior living. She moved into a community for independent seniors, which worked out for some time. Then we got a couple scares. First, she wandered off the property and got lost; thankfully, a good Samaritan picked her up and brought her home. Second, she left the stove on in her apartment and like to set the place on fire. After that it was time for Assisted Living. She now lives in the "memory center" but is quite happy there. At 92, though her mental state is not what it used to be, she still enjoys reading, playing games, and going on excursions. Physically she is in amazing shape, probably still able to whip at least her weight in wildcats. Nevertheless, it is sad to see her deteriorating so. I love her and I always will, the woman who brought my wonderful dad into the world, and after I moved in with her helped me go from a mere adult to a genuine lady.

Anonymous
Atlanta, GA

Best Dad Ever!

I lost my dad to alzheimer's in 2002. I was fortunate to have found a wonderful place with compassionate caregivers, who took care of dad in a home type setting. Dad always had a smile on his face and was very pleasant. His face would light up whenever I came to see him. He would remind me to help mom with the babies. I reminded him I was one of the babies, and he just smiled.
He was aware that his mind wasn't what it used to be and he was often sad that he couldn't remember things. He knew I was someone special and that was good enough for me. He luckily didn't get to the late stages of alzheimer's and was able to eat, drink and get around a little with minimal care. I am grateful for the time we had to take walks, rides to Philly in the car and the memories I will have forever.
I have participated in several walks and had donations made in his memory when he passed. Someday it is my hope that a cure will be found.

Arlene Satz
Cherry Hill, NJ

Still Sarah

My partner of over 18 years was diagnosed with Alzheimer's about 7 years ago when Sarah was 60. The first few years the changes were slow but the past 2-3 years the changes and decline have been rapid and challenging. A couple of years ago Sarah was diagnosed with Lewy Body Dementia. This dementia takes your loved one with the disease, and their loved ones and caregivers on a particularly cruel roller coaster journey. About a year ago we finally had to move Sarah to a assisted-living facility that specializes in care for residents with Alzheimer's and Dementia only. Although this facility is wonderful and close by (10 minute drive) - putting Sarah in this facility was the worst day of my life. Beyond all the special ways they care for Sarah, I also can bring our beloved dog Dixie to visit Sarah and others at her new home. They often take naps together. We've been surrounded by many loving and supportive family, friends, and caregivers. Without them this would have all been unbearable as we've gone through so many stages of loss and change. I've been learning to take it one day at a time for a while now and just honor the way Sarah needs to be - no matter how challenging or needy. Sarah's inner core is still very much there and we are blessed to witness her grace, caring spirit with other residents, dancing, love, and humor. She is very much "Still Sarah".

Theresa Thompson
Bloomington, IN