From My Perspective… Living with Alzheimer’s

As Told to Jamie Wilson

From Personal Stories in Living with Alzheimer’s

I am Red. Red Johnson. I am an 86-year-old man who has had many life experiences. I am an 86-year-old man who can’t remember most of those life experiences. I do remember I was a bank president. I do remember I was a pilot in World War II. I do remember I used to grow wonderful tomatoes.

I am Red.

I was Pat’s husband for 62 years. I know I forget her name sometimes. And, sometimes, I forget that she died. But, I do know I am very sad and lonely. Something is missing – actually someone is missing. I miss her a lot. It wasn’t supposed to happen this way.

I am Red.

I am Jay’s father, even though I call him Gordie now. Deep down, I know and remember my son. I am Nancy’s father, even though I sometimes call her my sister’s name. My older sister, who used to do things for me and watch out for me. Nancy does that now. I was a brother and a son, but now I am the last living one. Do you know how it feels to be the last one in your family? It is disorienting and lonely. All that I could depend on has been taken away from me.

I am Red.

I love my family. My daughter-in-law and son-in-law; my grandchildren and great-grandchildren; my in-laws; and my nieces and nephews. I might not remember their names. I might be tongue tied when I try to talk with them. But, I still love them. Do you know how dumb it feels when you “know” the person talking with you is an old friend and you can’t remember their name? I know something is wrong with me, and I hate it. Don’t look “through me” just because I can’t remember your name or am mixed up about what day it is. Don’t ignore my needs because you think it doesn’t matter.

Remember, I am Red.

I am Red. Red Johnson. I have a sense of humor. I have feelings. I want to feel competent. I want to be loved. I value doing a hard day’s work. I like to contribute and help someone else. I love to help others. Don’t take that away from me. It robs me of the little self esteem I have left. If I can carry a box for you; hold the door open for you; help you in some way, I would like that very much.

Remember, I am Red.

I want to feel productive. Give me something to do and then walk alongside me so I can be successful. I love to bowl. Actually, I love to win, and I get a big smile on my face when I beat my son-in-law in bowling. I love to golf. I love to garden. I want to be active, like I’ve been all of my life. Go for walks with me. Play with me.

I am still Red and I need to have that activity.

Do you know how hard it is to be locked in and not have the freedom to go for a walk when you feel like it? It is terrible. That’s why it is so important I have things to do. It seems like some of you are afraid of me. I know I act different now. I know I don’t understand everything you say. I know it is hard for me to find the words I want to express what is on my mind. I know I can’t participate in conversations very easily. I know I think slower, walk slower, act slower. Please make an effort to see that and honor who I am now and who I was before.

I am still Red. Red Johnson.

Wouldn’t you want that for your father or mother? Wouldn’t you want them to be respected and listened to; cared about and valued? Wouldn’t you want them to be busy if they want to be busy? Wouldn’t you want them to have someone to talk to? I can sense when you are putting me off and when you are paying attention to me. I “know” when you care and when you don’t care about me. I might have my shirt on backwards. I might have mismatched socks, only one glove, and a summer jacket on in the wintertime. I want people to be genuine with me.

I am still Red.

I get sad. I get angry. I get frustrated. I get scared. I get bored. I get lonely. I am Red. Just because I no longer have a voice and can’t clearly articulate what I need, don’t discount me. Listen to my ramblings because then I feel like my point of view has value. Realize that even though my comments don’t make much sense at times, they make sense to me and if you explore it with me you might find out what I am thinking about, what I am worried about, what I need at the moment.

Remember, I am Red.

I want to feel competent. I want to feel needed. What I really want is to have “me” back-my mind and my memories. It doesn’t look like that will happen, so please be sensitive to my basic needs and feelings.

Please don’t forget that I am Red. Red Johnson.


About the Author

Rev. Jamie Wilson Headley – CDP, CDI, CSA, MBA President & CEO Dementia Services Group is a full service dementia consulting company that works directly with families dealing with a dementia diagnosis, acting as a navigator, advisor and advocate. DSG also provides dementia training to industry professionals and the community at large. Ms Wilson is a sought after public speaker on dementia and aging. Jamie has been trained by the Alzheimer’s Association of America as a Dementia Professional, and has been certified by the National Council of Certified Dementia Practitioners as a Certified Dementia Practitioner and as an Instructor. Ms Wilson has also been trained as a Certified Senior Advisor and is an ordained non -denominational minister. Jamie has a great deal of personal experience with dementia as well as her professional training. Jamie’s mother died of Alzheimer’s disease. As her Mother’s caretaker and advocate, Jamie gained a wealth of knowledge, much of it she quips, on “what NOT to do”. In addition, Jamie holds a BA and MBA from Dominican University in River Forest, IL and spent her “former life” as an operations executive working with fortune 500 companies. Jamie was hired by companies for her expertise in crisis management, strategic planning, leading through change and training and development. This expertise transfers into her work as an advocate, advisor and educator. The mission of DSG is to improve the lives of those living with dementia by offering support, advocacy and advice to individuals and families and by providing education to healthcare professionals and senior providers. This is Jamie’s passion, her purpose and her ministry.