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Being Patient Voices

These are the voices of people directly impacted by Alzheimer’s — those with a diagnosis and the loved ones who take care of them. We share their experiences and the advice they have for those going through the same thing.

Karen Chester

Love is my only advice. I couldn’t do this without love.

Heather Oglesby

Make a mental determination that you are a priority and you will not allow the caregiving role to destroy you.

Lauren Dykovitz

Just because there is no treatment and no cure, it does not mean that you have to take this disease lying down.

Julie Fleming

I was physically, mentally and emotionally exhausted. I’m now rebuilding my health and life from the ground up.

Becky Cody-Maiden

What they see, think, and believe is real to them. No amount of arguing will persuade them of any different.

Angela Wickes

Making the decision to put Mum into care was a massive challenge.

Sharon Hall

We, as dementia care partners, have the difficult task of separating emotionally from the behaviors of dementia.

Melissa Price-Williams

Step into their world. Listen to their stories, even if there is no truth to them.

Kathy Saliba

Talk to others and share your feelings. The more we talk about it as a society, the less stigma there will be about this disease.

Lynda Weston

Dementia is such a deeply inward journey, I think patients can use art as a way of connecting with people and recognizing the ‘something’ different or new that is taking place in their minds.
Heather Wallace

Heather Wallace

Honor yourself for doing what you have been able to, and forgive yourself for not being able to make this disease easier.

Mary Edwards-Olson

There were days I thought she was being lazy or difficult on purpose, and I would get so upset. In those moments, please remember—it's the disease. Your loved one is in there, scared and confused.

Amy Jolley

Always offer support to the patient when he or she is in pain or doesn’t want to be alone. Sometimes, just a gentle touch to the patient's arm or sitting on the bed next to him or her is enough to offer reassurance.

Donald Conley II

Realize that your loved one will communicate differently than before. Pay attention to patterns and what each action means so that you can better respond to your loved one in the future.

Alice Ashwell

The behavioral problems we think are caused by dementia are triggered by our own irritability, which our loved ones sense. It was up to me to create an emotional environment in which she felt safe, calm and loved.

Robin Harris

Don’t retreat within yourself because you feel uncomfortable; this experience is not just about you. Take those feelings, and let them fuel you to spend more time with your loved one.

Aaron Clark

Give the primary caregivers grace by thanking them for everything they do and apologizing if you were hard on them.

Matthew Adams

Children are often aware of a difficult atmosphere, even when they haven’t been told the facts. It can be reassuring for children to understand what the problem is.

Ann Campanella

If you have a loved one who has an affection for animals, my advice would be the following: Don’t be afraid to allow that connection to flourish.

Miki Klocke

I realized that self-care does not have to include physical actions such as meeting a friend for coffee; self-care can also be a mindset.

Hannah Dawson

Since I am only 16 years old, the only real advice I can offer is that you should take advantage of every moment you spend with your loved ones, in general, and when they are suffering. 

Marie Temple

If your loved one is still in the moderate stages of Alzheimer’s, taking a trip—even locally—may benefit you both. Caregivers may avoid taking their loved one with Alzheimer’s out in public, but I believe socialization is important.

Andrew Kane

Buy your loved ones a mechanical pet or doll to encourage them to stay in their wheelchair and avoid falling. Mom's mechanical cat has been her lifesaver.

Lesley Hawke

Try not to give your children false hope when discussing this disease. This experience is horrific for them to go through, but I try to be as open as possible about what will happen and remind them that each time we visit Mimi, she may be different.

Hillary Kennedy

My coworker told me that during the two years she’s known me, it has always been about my mother and asked when I planned on making it about me. Her comment brought tears to my eyes. She gave me permission to care for myself too. Try to do the same. 

Elizabeth DeHaan

Do your research, if possible. For a period, I actively researched Alzheimer’s and watched specials on it. These practices helped me understand what was happening. If you better understand the disease, your relationship with your loved one will likely improve.

Lisa B. Capp

If you don’t find yourself in crisis and have time for preplanning, consider recommending baseline cognitive tests to your loved one as a precaution. You could offer to take the test together as a measure of your shared health.

Iris Manning

If possible, get help. We used home health aides in the morning through a home health insurance policy my parents had, and a volunteer from a social services agency in the afternoon. The home health aides assisted with my father's bathing, trips to the doctor and supermarket, meals, light housekeeping and companionship. 

Ashley Adaire

When my Grandpa visited her every day with a can of iced tea, she got this spark in her eyes. He thought it was the iced tea, but I know it was because he showed up to visit her at the same time every day. Routines are helpful for Alzheimer's patients.

Vicki Tapia

If possible, avoid reminding your loved ones they’re losing their memory. I can only imagine how frightening life must be for someone affected by dementia.

Joy Johnston

Managing illness and disease in a rural setting also comes with its own challenges. Become familiar with the healthcare services in your parents' area before a health crisis occurs. How close is the nearest hospital? How far do you have to travel for specialized tests?

Michelle Macadangdang

When you’re married to someone with dementia, I believe it’s important to still make that person feel included by continuing to share new experiences with him. My husband is only 47 years old. We go on double dates and holiday with family friends.

Gary Joseph LeBlanc

When you take your loved one into the emergency room, you shouldn’t let him or her go into the triage alone. Often, family members start filling out paperwork in a front room, while dementia patients are taken into a back room. Instead, take the papers with you so that you don’t leave your loved one alone.

Constance L. Vincent

I started to record what she said on my evening phone calls to her. My mother’s words show the feelings and needs that some Alzheimer’s patients have: the need for family interactions, memory stimulation, and familiar activities.

Ralonda Thompson

Part of being assertive and helping your loved one means asking the right questions. I have a journal and jot down questions that I feel I need to ask the doctor at our next visit.

Lisa Paglia

Eventually, your loved one with dementia may stop recognizing you because of the damage that is happening to their short-term memory. The best approach to this situation is to join their reality. 

Kathryn Harrison

We still wanted to keep music in Mom’s life once she went into long-term care. I love the idea of caregivers creating a playlist for their loved ones so that they can have music around them as much as they want.

Danielle Dawson

To improve my dad’s mood, we used music, took him off the drugs he was on, provided him with a lot of love and had faith in him. These approaches changed my dad from an aggressive dementia patient to someone who is living his best life.

Jean O’Connor

Hospice was the way to go because my dad was no longer going back and forth to different doctors each day who offered different suggestions. He had an assigned, dedicated care team.

Bobbi Michele Spielman

Finding support from other people who understand how I’m feeling changed my life. I think it’s important to find others who can help you get through these difficult circumstances.

Giovanna Sgarlata LoSardo

After you place your loved one in a nursing home, you should visit frequently. Change the time of day you visit the nursing home. Keep the staff wondering when you’re going to show up.

Connie Welshonse

Sometimes, when he’d forget certain words, we’d tell him we wanted to play Charades with him to help him find the right words. We’d say, “Our charades game is terrible, but if you just give us a few minutes, we’ll get better and try to figure out what you’re trying to tell us.”

Jamie Scudder

When we wanted to help him walk, we’d say, “OK, let’s march—left, left, left, right, left,” and then he knew we were moving forward. If we wanted to help him line up his chair, we’d make a dance out of it.

Rebecca Lloyd Lewis

Nurses need to respect each patient as an individual, treat the patient with dignity and remember that patient was once just like you or me. Every person with dementia has a great history and stories.

Gail Weatherill

Caregivers often feel as if they have to go along with what the doctor recommends, but that’s not the case. If something doesn’t feel right in their gut, they always have the right to say no or seek a second opinion.

Ayana Sadler

My mother sees a therapist each week to relieve some stress. Her therapist recommended that she go to see a movie, go on a mini vacation, read, listen to music, go for a walk outside or even take herself on a nice lunch date.

Christine Thelker

If you want to remain happy, not everyone can have access to you. Knowing that you are still capable and have worth is a really big part of staying strong after a dementia diagnosis.

Ian Hastings

I believe that changing my diet, exercising and making mental health a priority have helped me stay sharp.

R. Lynn Barnett

I tell other caregivers who have a loved one with Alzheimer’s that it’s not in poor taste to find humor whenever you can, if appropriate.

Remmya Liz Kaparampil

Had there been more awareness of Alzheimer’s, nursing facilities or proper caregiver education, there is a possibility that my grandfather could have lived longer.
Alzheimer's caregiver

Laura Smothers-Chu

It wasn't enough to research health care professionals online. I wish I had met with them in person too before my parents worked with them.
Angela

Angela Hogarth

It would be difficult to live with the knowledge that the rest of your life will be taken to this disease. But you have to live your life to the fullest now, as no one knows what's around the corner.
Trish Laub

Trish Laub

It was our objective to maintain my dad’s quality of life as opposed to its longevity. That became our goal: quality of life versus longevity.
David Davis

David Davis

Healing, I continue to discover, does not follow a straight line from sorrow to joy, nor does it look like I imagined it should.
David Avrutick

David AvRutick

I've noticed that in many families, there's a lot of denial surrounding Alzheimer's. People may come up with excuses as to why their own, or a loved one's, behavior has changed. No one wants to admit there is a serious problem going on.
caregiver

Geeta Iyer

As a caregiver, you neglect yourself. You need to learn to care for yourself, too.
Glen Davis

Glen Davis

I had thoughts of “Why me?”... I became a better carer once I made the leap to “Why not me?”

Robyn Soranson

Moving an older parent, especially one with diagnosed with dementia, is not an easy task. Planning far ahead was and continues to be the most important part of making my mother comfortable in any environment.

Michael Quayle

I know that I will never quit, never stop spreading awareness about my story and the life Alzheimer’s has given me.
Geri Taylor

Geri Taylor

Declining slowly can be a beautiful thing.
Richard Apple

Richard Apple

I made a promise to myself: I would do what I could to fight Alzheimer’s when I got a chance.
Stephanie Karfelt

Stephanie Karfelt

What I wish I’d known is that while Alzheimer’s can steal memories and bodily functions, your person is still in there somewhere. Your job is to find them, however briefly.
Roger Pua

Roger Pua

I learned to accept that there will be new memories, including very different or unpleasant ones, that complement and co-exist with the old, fond ones I have of her.
Rochelle Long

Rochelle Long

Even though there is not a cure, you can still help your loved ones who are suffering from Alzheimer’s by joining a clinical trial.