Transcript Alzheimer*s Disease - Cardinal Scholar Home

Courtney Roberts
Sad
Mood
Swings
Confusion
Fast
Don’t Want It
Loss of
Time
Hostility
Grandpa
Daddy
Family
Affected and
Support
Wreck less
Brother
Old
People
“Alzheimer’s is the cleverest thief,
because she not only steals from
you, but she steals the very thing
you need to remember what’s been
stolen”
-Jarod Kintz
The Basics

 Known as AD for short
 Most common irreversible dementia in later life
 Types: early-onset (rare); late-onset (common);
familial (inherited)
 Deficits in attention, learning, memory, language
skills, judgement, and orientation
 Personality changes
 Varies among individuals diagnosed
 Beginning, middle, and advanced stages
Hooyman, N. R., & Kiyak, H. A. (2011). Social gerontology a multidisciplinary perspective. (9 ed., pp. 244-251; 394-433). Boston, MA:
Pearson Education Inc.
Let’s Get Personal

 Who: Greg
 Relation: My Uncle
 What: Diagnosed with
AD at 53 years old
(early-onset) and
passed away at 59 after
6 years of fighting.
 Why: Greg fuels my
inspiration and passion
for this field and I want
to share our story to
help others.
Informal Caregiving

 Unpaid care provided by family, friends, etc.
 Assistance with personal care, chores, transportation,
and other daily tasks
 Financial, physical, and emotional stress
Hooyman, N. R., & Kiyak, H. A. (2011). Social gerontology a multidisciplinary perspective. (9 ed., pp. 244-251; 394-433). Boston, MA:
Pearson Education Inc.
Meet the Caregivers

This is Mary, Nancy, and
Phyllis (left to right). They were
Greg’s sisters and caregivers,
but I like to think of them as
his angels.
The following slides will
walk you through the
journey and experiences that
they encountered with Greg.
Referred to as…Nancy (N) and Phyllis (P); Mary was unable to comment
The Diagnoses

 N: He lost his job in Chicago due to “down-sizing”. We went up to
move him to Peoria and it was clear something wasn’t right. Mary
offered for Greg to stay with her and John for a month or so until he
found a job. He couldn’t focus, couldn’t remember dates for his
resume, couldn’t do a basic skills job. Mary’s the one that brought it to
light-thought maybe a stroke or something. I remember sitting in
Mary’s living room with Greg, Phyll and Mary, it was so horrible. I
remember telling him we would not put him in a nursing home…I will
always regret those words. I had no idea what lied ahead.
 P: I thought he had cancer, never dreaming it would be Alzheimer’s at
such a young age. As all the blood work and CT scans came back and
the meeting with the neurologist, it was devastating to me that Greg
had Alzheimer’s. Working with the geriatric population, I knew what
we were looking forward to. I remember him wanting us to promise
not to put him in a nursing home and I told him that I couldn’t make
that promise to him. That was so hard.
How Did You Decide To Be
a Caregiver?

 N: With Mom dying in 1982
and Dad in 2000 Mary, Phyll
and I kind of took charge
together heading up the
family. So it seemed logical,
especially with his kids living
in Chicago and him being
single and basically alone.
 P: This is what Mary, Nancy,
and I do. We take care of what
needs to be done. Greg was
not going to face it alone. We
“circled the wagons” and
marched on. Quite frankly, I
don’t know if I could have
been a caregiver without the
love and support not only
from Greg, but the rest of the
family.
Nancy, Courtney, Greg, Kelsey (Greg’s
daughter), Mary, and Phyllis moving Greg to
Bickford
What were your
responsibilities?

Nancy shaving Greg
 N: Wow. Started out
simple…take him to a movie,
church, our house for football
games, dinner, errands,
support group, Senior World,
etc. Then it got real intense.
Cleaning his house, feeding,
medications, brushing,
toileting, walking, talking for
both of us when he could no
longer communicate.
 P: The responsibilities could
be overwhelming. At first it
was checking in on him. But
as the disease progressed, it
was total care from personal
hygiene to fixing meals.
Did You Have Any Positive
Feelings or Experiences?

 N: Realizing that I was stronger than I thought, but Phil,
Courtney, and Alex (husband and kids) were amazing. They just
jumped in; it made us all appreciate life more I think.
When he spoke at a fundraiser for the Alzheimer’s
Association and Joe Girardi was there. Greg was so cute
and everyone was so proud of him.
 P: I know there are positive things I felt about caregiving,
but I was so frustrated at times that the guilt over my
feelings didn’t even compare to what Greg was going
through. I am having a hard time thinking of anything
positive because it is still so fresh in my memory of the
struggles and watching the decline. I kept asking God
why Greg at such a young age.
What Was the Hardest Part
of This Experience?

 N: I think when he knew what was happening and
what was going to happen and then when he didn’t
know. So heartbreaking to watch someone so young
and handsome just disappear before your eyes.
 P: I would not want Greg to be mad at me for
sending him to Community Workshop training or to
Senior World (adult day care), but because we all worked
there were limited choices.
Is There Anything That You
Would Ask/Tell Greg Now?

 N: Did I do okay by
you? Were you happy?
 P: I would tell him that
I am sorry.
What Advice Would You
Give To Other Caregivers?

 N: Be patient. Use the resources available out there
in the community. Don’t shut your family and
friends out; you really can’t do it alone. Don’t be so
hard on yourself -being a caregiver is probably one
of the hardest things you will ever do.
 P: I would tell other caregivers to do the best they
could and have a circle of support. You don’t really
think about the difficulties while you are going
through it. You just do it. I never wanted Greg to feel
alone.
How Did You Cope?

 N: I don’t think I coped very well actually. I allowed
it to stress me out totally. I feel I wasn’t really there
sometimes for Phil, Courtney and Alex or Greg.
 P: To cope I always had Bob (husband), Mary, and
Nancy. We would vent and cry (there was a lot of
tears).
What Changes Did You See
in Greg?

 N: Sadness, confusion, anger, disconnect,
aggressiveness, then just letting go.
 P: The changes in Greg were overwhelming. Losing
his job at Steve & Barrys. Not being able to drive.
Losing his self-confidence because he could not
make decisions. The personal hygiene. The changes
in his appearance. The wandering without purpose.
Not knowing us. I could go on and on.
The Changes

Before AD
After AD
Did You Struggle Balancing
Responsibilities?

 N: It was so hard. I always felt like I was short
changing Greg, Phil, Courtney and Alex. I wanted to
be the best wife, mom and sister I could be, but I
never felt like I was able to balance it. You’re just so
emotional all the time it’s crazy to expect anyone to
balance their responsibilities.
 P: For me, I worked all day with Alzheimer’s
residents, then when it was my week with Greg I
would leave work and take care of him. I was just
tired. I could not wait for the week to be over. I hated
going to Bickford and Heartland.
Describe The Final Days Of
Greg’s Life

 N: Kind of a blur. So hard watching and living it.
Can’t even describe-sorry.
 P: During the end, I just wanted it to be over. It is so
hard to watch the struggle. Greg kept falling. He was
so aggressive towards others; he would never in a
million years be physical towards other people. I
hated the fact that others did not know our Greg,
who would do anything for others. Kind and loving
Greg. It was devastating to us when he got kicked
out of Bickford for his physical actions.
For the Husbands…What Was
The Hardest Part For You?

 Phil (Nancy’s Husband): Wishing that I could do more or
make it all go away for Nancy.
 Bob (Phyllis’ Husband): No sleep on her part. Not having her
own life, losing her brother. Not knowing what to
say and not knowing the right words to say.
What Did You Do To Help
Your Wife?

 Phil: I just always tried to be there for her. I tried to
listen to her. And I always tried to help in any way I
could.
 Bob: We prayed together. I held her and listened to
her. I didn’t give much advice because I didn’t know
the answers to her questions she would ask. Just
being there for her.
Letter I Wrote After Greg
Died

Dear Uncle Greg,
Oh the things I would ask you if you were still with us. I have had to say good-bye to you
twice in my life: once when you mentally left us and once when you physically left us. I think that the
first time was the hardest. How do you say good-bye to someone that is still present? How do you let go
of someone who is your inspiration? How do you help a family who is mourning when you are still
alive? How do we give you a quality of life when there is none? When you were dying, I took a shift of
staying with you while everyone else was at work and in that peaceful and heart breaking moment I said
good-bye to you forever.
I never got the chance to say thank you. Thanks for being my uncle. Thanks for making me
see what is important in life. Thank you for the one-on-one moments that we shared together. Thank you
for inspiring me and instilling in me a passion that I hope will never die out. Thank you for making me
realize how truly amazing and selfless mom, Aunt Phyllis, and Aunt Mary are.
I will never forget dancing at the Goo Goo Dolls concert with you or singing to short skirt/
long jacket by Cake while I drove you to dinner. I will never forget holding your hand and walking
around Bickford. I will never forget eating M&Ms together while we hid from the rest of the family or the
time that you said I drank too much beer at college and got fat. You could always make me laugh and
your laugh had the ability to light up a room and make all of us around you smile. You had a heart of
gold and you were one of the best role models in my life and you didn’t even know it. Holidays and
family functions will never be the same because we will always know that someone very special is
missing, but knowing you are finally free from the suffering and confusion that you experienced is
comforting to us. Keep watching over us because you are one heck of a guardian angel.
Love You Forever,
Courtney
Me and My Inspiration

I hope that this presentation was able to give
some insight on the reality of caring for a loved
one with Alzheimer’s Disease. I have talked to
so many people that only know the basics of
this disease and I wanted to share what it is
really like to watch someone you love fade
away. It is important to try and remember who
the person was before they became a prisoner
of AD. And always remember to love them
unconditionally and make sure that they know
the love you have for them.
References

 Hooyman, N. R., & Kiyak, H. A. (2011). Social
gerontology a multidisciplinary perspective. (9 ed.,
pp. 244-251; 394-433). Boston, MA: Pearson
Education Inc.
 McCabe, P. (2013, December 6). Interview by C.L.
Roberts [].
 Roberts, N. (2013, December 6). Interview by C.L.
Roberts []. Greg questions.