Courtney Roberts. Memory and Memory Loss Confusion Sad Loss of Time Family Affected and Support Mood...
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Courtney Roberts. Memory and Memory Loss Confusion Sad Loss of Time Family Affected and Support Mood Swings Grandpa Dementia Brother Daddy Empty Devastating
Memory and Memory Loss Confusion Sad Loss of Time Family
Affected and Support Mood Swings Grandpa Dementia Brother Daddy
Empty Devastating Old People Wreck less Fast Hostility Dont Want
It
Slide 3
Alzheimers is the cleverest thief, because she not only steals
from you, but she steals the very thing you need to remember whats
been stolen -Jarod Kintz
Slide 4
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.
Slide 5
Lets 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.
Slide 6
Unpaid care provided by family, friends, etc. Assistance with
personal care, chores, transportation, and other daily tasks
Financial, physical, and emotional stress Informal Caregiving
Hooyman, N. R., & Kiyak, H. A. (2011). Social gerontology a
multidisciplinary perspective. (9 ed., pp. 244-251; 394-433).
Boston, MA: Pearson Education Inc.
Slide 7
Meet the Caregivers This is Mary, Nancy, and Phyllis (left to
right). They were Gregs 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 asNancy (N) and Phyllis (P); Mary was unable to
comment
Slide 8
N: He lost his job in Chicago due to down-sizing. We went up to
move him to Peoria and it was clear something wasnt right. Mary
offered for Greg to stay with her and John for a month or so until
he found a job. He couldnt focus, couldnt remember dates for his
resume, couldnt do a basic skills job. Marys the one that brought
it to light-thought maybe a stroke or something. I remember sitting
in Marys living room with Greg, Phyll and Mary, it was so horrible.
I remember telling him we would not put him in a nursing homeI will
always regret those words. I had no idea what lied ahead. P: I
thought he had cancer, never dreaming it would be Alzheimers 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 Alzheimers. 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
couldnt make that promise to him. That was so hard. The
Diagnoses
Slide 9
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 dont 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 (Gregs daughter),
Mary, and Phyllis moving Greg to Bickford
Slide 10
What were your responsibilities? N: Wow. Started out simpletake
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. Nancy shaving
Greg
Slide 11
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 Alzheimers 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
didnt 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. Did You Have Any
Positive Feelings or Experiences?
Slide 12
N: I think when he knew what was happening and what was going
to happen and then when he didnt 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. What Was the Hardest Part
of This Experience?
Slide 13
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.
Slide 14
N: Be patient. Use the resources available out there in the
community. Dont shut your family and friends out; you really cant
do it alone. Dont 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 dont really think about the difficulties while you
are going through it. You just do it. I never wanted Greg to feel
alone. What Advice Would You Give To Other Caregivers?
Slide 15
N: I dont think I coped very well actually. I allowed it to
stress me out totally. I feel I wasnt 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). How Did You Cope?
Slide 16
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. What Changes Did You
See in Greg?
Slide 17
The Changes Before AD After AD
Slide 18
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. Youre just so emotional all the time its crazy to expect anyone
to balance their responsibilities. P: For me, I worked all day with
Alzheimers 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.
Did You Struggle Balancing Responsibilities?
Slide 19
N: Kind of a blur. So hard watching and living it. Cant 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. Describe The Final Days Of Gregs
Life
Slide 20
Phil (Nancys 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. For the HusbandsWhat
Was The Hardest Part For You?
Slide 21
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 didnt give
much advice because I didnt know the answers to her questions she
would ask. Just being there for her. What Did You Do To Help Your
Wife?
Slide 22
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 didnt 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 Letter I Wrote After Greg
Died
Slide 23
Me and My Inspiration
Slide 24
Slide 25
I hope that this presentation was able to give some insight on
the reality of caring for a loved one with Alzheimers 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.
Slide 26
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.