The Truth Behind Alzheimer’s

Disease

Courtney Roberts

Alzheimer’s Disease

Memory and

Memory Loss

ConfusionSad

Loss of Time

Family Affected and

Support

Mood Swings

Grandpa

Dementia

Brother

Daddy

Empty

Devastating

Old PeopleWreck less

Fast

Hostility

Don’t Want It

“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.

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.

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

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.

The Diagnoses

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?

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.

Nancy shaving Greg

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.

Did You Have Any Positive Feelings or

Experiences?

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.

What Was the Hardest Part of This Experience?

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.

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.

What Advice Would You Give To Other Caregivers?

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).

How Did You Cope?

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?

The Changes

Before AD After AD

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.

Did You Struggle Balancing

Responsibilities?

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.

Describe The Final Days Of Greg’s Life

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.

For the Husbands…What Was The Hardest Part For

You?

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.

What Did You Do To Help Your Wife?

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

Letter I Wrote After Greg Died

Me and My Inspiration

Our

Angel

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). Socialgerontology 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.