ALZHEIMER’S CAREGIVERS

There are over 100 MLLION Alzheimer’s Caregivers in the world and they have one of the toughest jobs on the planet. On this page, caregivers from around the world share their personal stories from the front lines, in the fight against Alzheimer’s.

You can watch and listen to these brave caregivers, as they talk about the emotional and financial challenges they encounter on a daily basis. If you are looking for a specific, caregiving topic, please use the search feature, in the upper right corner of this page.

All of these caregivers opened up because they know the power of sharing their stories will help families who may be struggling. If you’re touched by these videos or learn something new, please share with your local, Alzheimer’s communities.

September 6, 2016

The Guilt and Anxiety of Alzheimer’s

(7/16) You know, it was super difficult. I guess one answer is that you’re always in “fight or flight” mode.  You’re always ready for something to happen and so, it’s hard to let yourself kind of relax and feel that because you’re always, I was always ready for the nursing home to call and say that he had, you know, swung at a nurse or he had a violent episode, where he was, you know, swearing and they had to medicate him to sedate him and then he ended up in the E.R. i mean, those calls came, a lot. Or, he fell out of bed and he broke something and they sent him to the E.R. Or they said he wouldn’t take a shower that day and he hadn’t showered in a week and they really needed him to do that, so could I come over and talk to him and get him in the shower. He didn’t want to be sick. He didn’t want to have this illness. He wouldn’t have wanted to live with it. He made that very clear at the beginning and, unfortunately, there wasn’t anything we could do about it. I cried a lot. I worked things out through yoga, through talking to friends. I had really good advisors, whether its social workers, that hospice provides, talking to the staff at the nursing home. I made sure they knew who I was and I knew who they were. So, if the nurse had a problem, she could call me immediately and I could talk it out with her. I’d rather she do that, then make a decision on her own, when she didn’t know my father as well as I did. He knew me until the very end. So, he knew that I would be there for him. It was hard for him. He didn’t want that from me, but he needed it. And he didn’t have anyone else. So I feel that he felt conflicted because, on one hand he really really wanted me there and really needed my attention and my time, and on the other hand he saw what it was doing to me and he felt bad about that.       Carrie Jackson lost her Father to Alzheimer’s disease. She is now a relentless advocate in the Chicago area and works tirelessly, to help raise awareness and funding for research.
September 6, 2016

I Am My Father’s Parent

(5/16) As I got older and as his disease progressed, there was a role reversal. So, we had a couple of years where we kind of had an adult relationship and we were on more even ground. But, as he started to decline, I became more of the parent and he became more of the child. So, eventually I was managing his finances, doing the grocery shopping, cooking the meals, paying rent, figuring out all of that stuff. Then, later on down the road, figuring out doctor’s visits and hospice and medicaid and insurance and nursing homes. You know, eventually memorial services and funeral, and cremation, and stuff like that. Because of the nature of the disease, there was a long, slow loss.      Carrie Jackson lost her Father to Alzheimer’s disease. She is now a relentless advocate in the Chicago area and works tirelessly, to help raise awareness and funding for research.
September 3, 2016

My Road to Alzheimer’s Caregiver

(4/16) It was a slow progression, so I think I was 24 when he was diagnosed, but he had been sick for awhile at that point. Because we didn’t know exactly what was going on at the beginning, I actually got angry at him, you know. We would go out to dinner and I would tell him stories about what I was doing or what I was studying or what I was doing at work, or my friends. And then the next day, he wouldn’t remember them and I said, you know, “it seems like you’re not paying attention to me. It sounds like, to me, I feel that you’re saying that my life isn’t important to you because you’re not listening.” And I felt awful years later, when we figured out what was happening. When he was diagnosed, he was living in the suburbs and I was living in the city. I ended up moving back to the suburbs, to be closer to him, so I got an apartment about four blocks from his apartment. Eventually I hired a caregiver to go over and be with him in the morning. So the caregiver was there, from seven to eleven. And she would get him dressed in the morning. She would clip his toenails, she would give him his medication, she would make breakfast, she would make lunch. She was a companion, she would make sure that he had meaningful engagement, that he had things to do, that he was safe at home. Then I would still go over, once in the afternoon and then go over in the evening, to make dinner. In 2008, that came to the point where he was no longer safe by himself, at home and I moved him into the first, of many, nursing homes.   Carrie Jackson lost her Father to Alzheimer’s disease. She is now a relentless advocate in the Chicago area and works tirelessly, to help raise awareness and funding for research.     
July 12, 2016

Mother & Daughter: Role Reversal

It definitely changed a lot. I was more dependent on my mom, but it became opposite and I had to, kind of step in and become head of household. At the beginning, the first two years coming to the United States was really challenging. So, I worked full time and went to school at the same time. So, definitely I became more responsible than her, later. Nayomi is a member of the Youth Movement Against Alzheimer’s, at UCLA.
June 30, 2016

Alzheimer’s Patients in the ER

It actually sticks out in my memory pretty clearly because it was the night shift I was working and the patient came in after a fall. And it was scary because, obviously a fall when you’re old is bad, but a fall when you’re old and we don’t know what medications you’re allergic to, so we’re not sure what pain medications to give. We don’t know what you’re other underlying diseases are, besides the dementia from Alzheimer’s. It’s kind of just, you show up without a whole lot of information and we have to do our best to help. But we don’t want to do any harm. Kate is a member of The Youth Movement Against Alzheimer’s, at UCLA.
June 22, 2016

The Inter-generational Program at UCLA

The Intergenerational Program here at UCLA is called “Time Out at UCLA”. We connect students in a one-on-one setting with early, mid, to moderate stage Alzheimer’s patients, who have similar hobbies, similar careers. A lot of them don’t get to interact with teenagers or people in their 20’s. We have drafted multiple activities, both group and individual activities for students to do, during this time. The goal of this program, from the student’s end, is to give them an understanding about the realities of working with Alzheimer’s patients. The core aspect of the program is to provide caregivers respite time, because there is no “off time” for caregiving. Nihal Satyadev (Co-Founder) and Max Reynolds of The Youth Movement Against Alzheimer’s talk about the hugely successful, Alzheimer’s caregiver respite program at UCLA – the “TimeOut” program.
June 22, 2016

Music Introduced Me to Alzheimer’s

Max is a member of the Youth Movement Against Alzheimer’s, to help high school and college students raise awareness and research money for Alzheimer’s.
February 4, 2016

The Michigan Dementia Care and Support Pilot

This project was started two years ago, where we are providing in-home, care consultations. So we’re going to meet with families to walk them through Alzheimer’s disease, in their home. We’re currently doing this in three counties and our hope is to expand and cover the whole state and be able to provide this service for people, wherever they are in the state of Michigan. The other, really neat part of this pilot project, is that we are doing a research component to it. We are studying, does this actually help save our state money? And are we able to help people stay in their homes longer? We know that long term care is one of the most expensive parts of Alzheimer’s disease, care and support. And many people can receive what they need, in-home. And that can provide, sometimes better care for the person, a less disruptive situation. And it costs less. So, at the end of the pilot project, our goal is to demonstrate that providing in-home care and support, helps save Michigan money. And so, we are just starting year three will be in the Fall of 2016. And after the end of year three of our pilot, we are hopeful that we can expand this or other services, to all counties in the state of Michigan. This is a really incredible pilot project that we’ve been doing. It’s modeled after work from North Dakota, that’s been wildly successful and they’ve found a huge return on investment to their state dollars. Lindsay Brieschke is Director of Public Policy for the Alzheimer’s Association, Michigan Chapters.
November 30, 2015

Dad tried to escape

He was fast. We had to put bells on the doors because he would get out and he would be gone. One time we had to, you know, call neighbors and circle the blocks and do an expanding, concentric set of circles to find him and he was at the laundromat, talking to people. Gabe’s Father died from Alzheimer’s. He’s now a relentless advocate.
November 30, 2015

Even with Alzheimer’s, Dad Still Teaches Us

Learn from them, still. They still have a lot to teach, even if they’re in bed or can’t move around as much. And I think that’s the part of Alzheimer’s that really gets to me, is that the disease is really taking away that core of that person, right in front of you, little by little. That personality, that sparkle, that life kind of is just being slowly taken away. And so you see them there, they look the same, or maybe they look a little different. And you can hold em, and hug em, and talk to em, but their personality is leaving and that’s that part that gets me. Gabe’s Father died from Alzheimer’s. He’s now a relentless advocate.
November 23, 2015

Hurry Up and Learn Patience

You’re not losing a person as they lose their memory. That person is just evolving and changing and you have to adjust to how their world is changing them and their world is getting so much smaller. And they’re effectively being compartmentalized and what they’re able to comprehend and you have to be able to put yourself in that same compartment and help them to get through and break through whatever they’re struggling with at that given moment. And whatever hard time you’re having in that instance, it’s not going to be there an hour from now, a day from now. Even when you falter and you get upset and you’re dealing as a caregiver and you are frustrated and you lash out and you might blow up and you might curse at them, they’re not going to remember in an hour, they’re not going to remember in a day. Ryan is the Primary Caregiver for his 93 year old Grandmother, who is living with Alzheimer’s.
November 23, 2015

Why I Started My Own Personal Care Agency

It’s pretty much formed everything that I do in life and everything’s kind of fallen in place since then. I started my own agency, where I have a personal care agency, where I place caregivers with seniors, postpartum, post-surgery recovery – all based off my experience with her and dealing with caregivers in the past. And, you know, understanding that there’s a whole demographic of people out there want to stay home just don’t have the ability to take care of themselves. Ryan is the Primary Caregiver for his 93 year old Grandmother, who is living with Alzheimer’s.
November 14, 2015

Be Present. Take Less Selfies.

“Life is precious and the moments you have, you have to cherish them. And you have to always be in-the-moment. The culture that we live in right now is so built on self-gratification, in that people are constantly taking selfies and taking photos to remember what’s happening right then and going on the moment and you never look back at these things. You never look back at these stupid selfies you have and these photos you’re taking and just appreciate what’s happening around you, all day, everyday. A great example I can give with that is, I went hiking with my cousin in Laguna last weekend and we did 10 miles and it took us a ridiculous amount of time because he kept stopping and taking pictures of nature – the same nature that’s there everyday, all the time. And if he would just get out more and do it more often, he would see that it’s not anything phenomenal or spectacular, it’s something that’s always there, always available to him. And you don’t have to stop and take pictures of it. It’s always there for you. And you need to experience more and put yourself in-the-moment and stop relying on all this technology around us to, you know, facilitate your memory. It’s ridiculous.” Ryan is the Primary Caregiver for his 93 year old Grandmother, who is living with Alzheimer’s.
November 14, 2015

My Mom’s Entire Life is Taking Care of My Grandmother

My mom and I are like best friends. So, she talks to me about everything. And it’s been really challenging for her. Like, she does probably, you know, over 18 hour days. My grandma’s at the point where she won’t sleep at night. So my mom stays up with her forever. She’ll talk to me and be like, “man, I don’t know when the last time I had a shower was…I haven’t eaten….” Like, my mom’s entire life is just taking care of my grandma. It’s intense. And she goes through kinds of, like waves of grief, like “oh, I’m sad about losing my mom”. And it’s like phases, because you lose your mom in a certain way, you lose who you thought you knew. And then it’s like, well, she’s still here so I’ll make everyday as great as I can. That’s what she always tells me. I’m just going to make everyday as great as I can.  Then you go through another phase after that, where it’s just like, wow, I’m actually going to lose her soon and it’s just a completely different kind of grief. Kacey’s Grandmother has Alzheimer’s.
November 10, 2015

Why It’s Important to Put Alzheimer’s on the Death Certificate

Jerry’s Mother died from Alzheimer’s. He’s an avid supporter of Autos for Alzheimer’s.
November 10, 2015

Siblings and Alzheimer’s: Everyone Is Different

“…we need a helluva lot more money coming from the government, to go into Alzheimer’s research. They think they’re doing a lot, but they’re doing a pittance. They really need to do something. And I think that the surgeon general’s office needs to be a lot more talkative and explanatory, to the general population about how insidious the disease is, with real examples of what it does. I think, in a way, the person with Alzheimer’s is lucky because they have no idea what is happening. But their families are devastated. And that was hard. And I think one of my brothers stayed away because he just couldn’t stand to look at it. And that’s the hard part…that’s the part that makes me sad.” Tom’s Mother died from Alzheimer’s.
November 10, 2015

Some People Just Need to Talk

Linda’s Best Friend died from Alzheimer’s. Now she helps other Caregivers and supports causes like Autos for Alzheimer’s. 
November 10, 2015

Caregiver Training

Elizabeth is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 10, 2015

Caregiver Fatigue

Elizabeth is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 9, 2015

My Parents Are Caregivers

Matt’s Grandfather died from Alzheimer’s.
November 8, 2015

Nobody Likes Talking About the Financial Burden

David’s Mother Died from Alzheimer’s.
November 8, 2015

Caregiving Aged My Father

David’s Mother Died from Alzheimer’s.
November 8, 2015

Mom’s Best Quality

David’s Mother died from Alzheimer’s. He is a relentless advocate.
November 8, 2015

My New Philosophy on Aging

Stacy’s Grandfather died from Alzheimer’s. She’s also a relentless Advocate for Alzheimer’s Association.
November 8, 2015

What Hospice Taught Me

Stacy’s Grandfather died from Alzheimer’s. She’s also a relentless Advocate for Alzheimer’s Association.
November 8, 2015

Money Matters: The Long Financial Journey

Tracy’s Mother Kathy has Alzheimer’s. The Autos for Alzheimer’s fundraising event is held every year, in honor of Kathy and to raise money for families dealing with Alzheimer’s.
November 8, 2015

ID Bracelets for Alzheimer’s Patients

Jerry’s Mother died from Alzheimer’s. He’s an avid supporter of Autos for Alzheimer’s.
November 8, 2015

Two Important Things to Do When Your Loved One Dies

Jerry’s Mother died from Alzheimer’s. He’s an avid supporter of Autos for Alzheimer’s. To find out more about brain tissue donations, click here.
November 8, 2015

A New Outlook on Life

Makayla’s Grandma has Alzheimer’s. Every year, her family holds the Autos for Alzheimer’s fundraising event.
November 8, 2015

Nursing Home Costs

Tom’s Mother died from Alzheimer’s.
November 8, 2015

Moving Mom into Full Time Care

Tom’s Mother died from Alzheimer’s.
November 8, 2015

How I Became A Caregiver

Linda’s Best Friend died from Alzheimer’s. Now she helps other Caregivers and supports causes like Autos for Alzheimer’s.
November 8, 2015

Thank You for Taking Care of Me

Linda’s Best Friend died from Alzheimer’s. Now she helps other Caregivers and supports causes like Autos for Alzheimer’s.
November 8, 2015

A Caregiver’s Inspiration

Linda’s Best Friend died from Alzheimer’s. Now she helps other Caregivers and supports causes like Autos for Alzheimer’s.
November 8, 2015

How to Speak Alzheimer’s

Christy’s Father-in-Law is living with Alzheimer’s.
November 8, 2015

Assisted Living Facilities

Christy’s Father-in-Law is living with Alzheimer’s.
November 8, 2015

What Do You Think Happens to Their Memories?

Cyndee’s best friend has Alzheimer’s. She’s also a relentless supporter of Autos for Alzheimer’s.
November 8, 2015

Alzheimer’s: Not Just a Family Issue

Cyndee’s best friend has Alzheimer’s. She’s also a relentless supporter of Autos for Alzheimer’s.
November 8, 2015

Caregiver Tip: Use Your Voice

Gabriella was her Grandfather’s Caregiver for many years. She is also working with the Alzheimer’s Association, in the San Fernando Valley.
November 8, 2015

My Alzheimer’s Family

Kelly’s Great Grandmother, Grandmother, and Uncle died from Alzheimer’s.
November 7, 2015

Caregiver Tip: Be Honest with Your Partner

Elizabeth is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 7, 2015

A Caregiver Message for Congress

Elizabeth is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 7, 2015

End Stages of Alzheimer’s

Elizabeth is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 7, 2015

Caregiver Burnout

Elizabeth Lees is the primary caregiver to her husband, Bill, who was diagnosed with Alzheimer’s at age 60.
November 7, 2015

Alzheimer’s Disease Symptoms

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

Lisa and Gary: A Love Story

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

The Long Road to An Alzheimer’s Diagnosis

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

Caregiver Support

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

Caregiver Duties

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

Alzheimer’s Message for Congress

Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.
November 7, 2015

Baby Boomers and Alzheimer’s

“I’m a baby boomer and this has happened to us and we are not prepared, financially, for the long haul. It truly is an ambiguous loss. You’re constantly dealing with a sadness that’s underlying your life and you’re trying to look for hope and inspiration and joy on top of that. And with that, there’s humor. My biggest concern is, as a baby boomer, how long is this journey? We don’t know. It could be two years, five years, 10 years, 20 years. If you look too far into the future, it’s terrifying, because we don’t have those answers. And I’m just talking personally, about what we’re going to do personally. Quality of care and quality of life are huge issues for us. But, what it does teach me, is to live in the moment. And that’s all we can do. And to make connections, to share our story, and make a difference as much as we can. And that’s what brings me hope.” Gary was diagnosed with Alzheimer’s in December 2012, at the age of 63. Gary and his wife Lisa founded AlzAcrossAmerica, a non-profit dedicated to helping baby boomers who are affected by Alzheimer’s.

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