-
Featured Story:
Brian and Amy NortonMy name is Brian. I'm husband and primary caregiver for Amy and father to Megan and Justin. Amy was diagnosed with younger onset Alzheimer's disease in 2013 at the age of 43.
-
Featured Story:
Loretta and Doris VeneyMy name is Loretta, I'm my mom's primary caregiver. I have given 75 presentations on my book Being My Mom's Mom about our 8 year journey with her dementia.
-
Featured Story:
Jane GayerMy name is Jane and I care for my husband Joe who was diagnosed with Alzheimer's. I seek humor in most things, and finding the remote control in the fridge is right up there.
-
Featured Story:
Michael and Judith JamesMy name is Michael and I was primary caregiver for my wife Judith. With no family closer than 1500 miles, it was a big challenge to manage my wife's care needs. Professional care providers from Home Instead made it possible for her to remain home during the middle stages.
- Filter: View All Stories
- View All Stories
- Which of these best describes you?
- If your loved one was experiencing signs of dementia, would you keep it a secret?
- Who are you here for?
- The thing I miss most is...
- I first began to worry when...
- The hardest part of my day today was...
- The best part of my day today was...
- I didn't consider myself a caregiver until I had to...
- I have found the most support from...
- I have felt most abandoned by...
- The thing that would surprise most people about my day is...
- The funniest thing that has happened was...
- The gift of being a caregiver is...
- The biggest change I have had to make...
-
I am...
I am family
For the most part my mother is in okay health. My dad had Alzheimer pretty bad. Taking care of my mom has really put a drag on me, and I'm afraid I'm going in the same direction as the both of them. I am worried. -
Would you keep it a secret?
No
As for myself the friends I've had for a long time would notice anyway. I think people notice no matter how hard you try to hide it. I know people are afraid it's going to happen to them so might try to avoid you. Sad. -
I’m here for...
Myself
I'm 75 doing a 24/7 caregiver job for my mom. I'm worried. -
I miss...
Freedom to be me. I'm afraid by the time God takes mom I won't have the energy to live free for awhile.
-
I first began to worry when...
6 years ago when I had to quit work to be home to care for my mom. Lately this year I feel angry, stressed, no energy, no interest. I'm forgetting places, I'm searching for words I know. I'm worried.
-
The hardest part of my day today was...
As soon as I got up and found mom pulled the stuff (including her pills) on the floor. I had to quick pick up the pills before my dog got to them. She roams around at night, and she's unsteady on her feet.
-
The best part of my day today was...
When my friend called.
-
I didn't consider myself a caregiver until I had to...
Quit my job. Then, this year when I had to deal every day and night with mom. I'm the only one. The job is me, just me. I had her in Adult Day Care. Bathroom problems started, and that upset me so much. Then she doesn't understand the pills any more, so that's a battle every morning and night. I'm tired.
-
I have found the most support from...
Adult Day Care. They're doing zoom now, but mom doesn't remember anyone. I sit her in front of the computer anyway.
-
I have felt most abandoned by...
My mom. She doesn't remember who I am. Ok, I understand that. She just knows I'm around all the time. She only moves with my direction.
-
The thing that would surprise most people about my day is...
I have no energy. I'm doing personal things I never thought I would do.
-
The gift of being a caregiver is...
God gave me this job to do, and I'm trying really hard to do it. Even though I'm a B a lot of the time.
-
The biggest change I have had to make...
Being happy. Not being able to go when I want to. Not working.
-
I miss...
her stories
-
I miss...
her independence
-
I miss...
Talking with my Mum like nothing had changed
-
I miss...
Enjoying time with my Mum where she is happy and we are happy and we can talk like old times, just sad. I brought up my daughter alone and my Dad died at 58 so it was always me, my Mum and my daughter Hannah.
-
I miss...
my father's kindness
-
I miss...
THE LAUGHTER WITH MY MOM....HAVING HER AS MY CONFIDANT.
-
I first began to worry when...
MY AUNTS BEGAN TO TELL ME THAT MOM WAS NOT ACTING THE SAME. THEN WHEN SHE HAD 2 CAR ACCIDENTS.
-
The hardest part of my day today was...
TALKING TO MY MOM ON THE PHONE THIS MORNING. SHE IS IN A PLACE OF WANTING TO RETURN TO HER HOME SHE LIVED IN YEARS BACK WHICH IS NOT POSSIBLE. IT IS OUT ON A RANCH , SECLUDED FROM ANYONE. SHE HAS BECOME VERY IRRITABLE AND RUDE WITH OUR CONVERSATIONS. SHE HAS NO MEMORY OF WHY SHE CAME TO LIVE HERE BUT ONLY REMEMBERS THAT WAS HER HOME BEFORE. I TRY TO REDIRECT OR CHANGE THE CONVERSATION BUT TO NO AVAIL. SHE JUST GETS MORE AGITATED. IT SEEMS THERE IS NOTHING THAT WILL CALM HER AND IT IS GETTING WORSE.
-
The best part of my day today was...
I GUESS THAT SHE IS STILL ABLE TO DIAL MY NUMBER.
-
I didn't consider myself a caregiver until I had to...
MOVE MY MOM HOME WITH ME AT FIRST. NOW THAT SHE IS IN ASSISTED LIVING I HAVE TO GO EVERY DAY TO CALM HER.
-
I have found the most support from...
MY HUSBAND.
-
I have felt most abandoned by...
MY SIBLINGS AND THE DOCTORS/NURSES WHO ARE SUPPOSED TO BE PROFESSIONALS IN THE FIELD.
-
The thing that would surprise most people about my day is...
HOW DRAINING IT IS TO HAVE HER CALLING AND TRYING TO CALM HER.
-
The funniest thing that has happened was...
SHE TOLD MY HUSBAND YESTERDAY HE COULD STAND TO MISS A FEW MEALS.....STILL HAS HER SENSE OF HUMOR..
-
The gift of being a caregiver is...
GETTING TO SPEND THE TIME THAT IS LEFT WITH MOM. GETTING TO EXPERIENCE THOSE FEW MOMENTS WHEN SHE IS HERSELF..
-
The biggest change I have had to make...
GIVING UP SO MUCH OF MY FAMILY TIME TO TAKE CARE OF HER. MISSING MY SON'S BASEBALL GAMES. GIVING UP MY SECOND JOB.
-
I miss...
the vision of a future - a fantasy that we would be here and well for much longer
-
I miss...
My great grandma because she died of old age.
-
I first began to worry when...
She started opening our bedroom door at 12:00 am.
-
The hardest part of my day today was...
When she died.
-
The best part of my day today was...
playing with my new fitbit that my grandma bought me for my birthday.
-
I didn't consider myself a caregiver until I had to...
help with my great grandma.
-
I have found the most support from...
My Grandma,Aunts&Uncles And My Mom.
-
I have felt most abandoned by...
Our female cat because she has sharp calls and they hurt like a son of a bitch.
-
The thing that would surprise most people about my day is...
Having fun presents for my Birthday and Christmas And Christmas Eve.
-
I am...
I am a friend
I love to draw -
I first began to worry when...
When I turned 62
-
I miss...
So many people, who were present at one point, who I took too often for granted, now, gone.
-
I first began to worry when...
When my mother was diagnosed.
-
The hardest part of my day today was...
Planning dinner.
-
The best part of my day today was...
Planning dinner.
-
I didn't consider myself a caregiver until I had to...
Until I had to plan into the future for someone else's care.
-
I have found the most support from...
Peggy, my wife.
-
I have felt most abandoned by...
Those that ride the bike faster.
-
The thing that would surprise most people about my day is...
I paint, I draw.
-
The funniest thing that has happened was...
just when it's all figured out, something else happens. And the horse takes Caesar for a ride.
-
The gift of being a caregiver is...
now, I'm almost as good as the dog thinks I am.
-
The biggest change I have had to make...
Living alone and aging .
-
I miss...
Occasionally forgetful
-
I first began to worry when...
Couldn’t recall saying something to someone
-
The best part of my day today was...
Waking up
-
I didn't consider myself a caregiver until I had to...
Help mom
-
I have found the most support from...
Friends
-
The thing that would surprise most people about my day is...
How much I do
-
The funniest thing that has happened was...
Something in my job
-
I miss...
Their advice.
-
I miss...
Nothing yet.
-
I miss...
Being able to interact as a family without this disease taking our energy and some of our joy.
-
I miss...
Watching my parents interact as a 68 year married couple. Now my mother has lost her partner. I miss their relationship.
-
I am...
I am family
My mom just past away from this at 60 years old. -
I miss...
My mother
-
I first began to worry when...
she couldn't remember what she was cooking
-
The hardest part of my day today was...
Struggling thinking I may develop it.
-
The best part of my day today was...
My son
-
I didn't consider myself a caregiver until I had to...
Change, wash, feed, etc
-
I have found the most support from...
My Aunt Bonnie
-
I have felt most abandoned by...
My brother
-
The thing that would surprise most people about my day is...
I feel like I'm lost
-
The biggest change I have had to make...
Comforting my dad
-
I am...
I am family
I am the Great-Granddaughter of a wonderful woman named Emma. She was diagnosed with Alzheimer's in 2011, at 80 years old. Today, she is 86. My Grandma, Christine was her primary caregiver until recently. -
Would you keep it a secret?
I don't know
I wouldn't keep it from close family or friends, however I wouldn't tell just anyone until I had to. -
I miss...
Coming home from school or work, and seeing my Great Grandma swinging in the front yard, watching the boats and cars go by. It was such a simple thing, but it made her so happy just to get out. 💜
-
I first began to worry when...
My Grandma and my Aunt took her on a weeklong trip, in late 2010. They noted that she seemed very confused, and noticed she just didn't seem her normal self.
-
I miss...
our connection. His joy when he sees me or is with me.
-
I miss...
we are not at that stage yet
-
I miss...
we are not at that stage yet
-
I am...
I am a caregiver
Tim and I married in 1981 and form many many years led a fun uneventful life as we raised our two children, Jamie and Andrea. As early as 2000 I realized something was going wrong with Tim's behavior and his decision making abilities. With my energies placed on raising our children and his energies placed on his ever expanding career, I never really stopped long enough to investigate WHAT might be going on in Tim's head. I wish the time had not come when I would have no choice but to stop and investigate. -
Would you keep it a secret?
No
Keeping secrets was never something I was good at. Keeping Tim's illness a secret would have made me feel as if I had done something wrong to cause this. Early on, I made up my mind not to allow this tragedy to define who our family is. In the earlier days after his diagnosis, I only mentioned it to friends who might ask. To be completely honest, that was because when I did share that Tim has a terminal illness, folks were at a loss for words, which made them feel awkward in a strange way. As time has passed, I have found that sharing with those who ask about Tim is a way to help remove the stigma from his Frontotemporal Dementia diagnosis. To alleviate the awkwardness, I have grown fond of saying " I don't mind if you tell others, because the more people who know, the odds are the more prayers that will go up on our behalf". Another favorite is to respond by saying "this just isn't quite the way we planned it....but we are doing well". When facing this disease there is no energy left for hiding or misplaced shame.....I need all my energy to deal with this head on!!! -
I’m here for...
Partner
Tim always described himself as a kid in a man suite and that he never had any intention of growing up, much less growing old. His quick wit and his ability to always be ready with an applicable joke earned him friends much quicker that I was ever able to acquire them. People were quite honestly drawn to him and his infectious smile. -
I miss...
When I met Tim at the factory where we both worked in 1979, he was so incredibly charming with energy enough for two people. We dated a couple of times, but as we fell in love, I realized he would forever be my hero in so many ways. Both of us came from humble beginnings, he with a single mother and me tossed back and forth between divorced parents. When Tim held me in his arms, for the first time in my life, I felt safe as if everything was going to be alright! And alright they were for almost 25 years. For our 25th wedding anniversary, we celebrated by renewing our vows and having the huge reception we could not afford in 1981 when we got married.
-
I first began to worry when...
Tim could not seem to remember things I had just said to him. He also could not remember conversations of great detail even one day after we had them. Additionally he began going to great lengths to impress supervisors and those he answered to in his job. He had never had any problem getting along with his superiors, but suddenly he was obsessing over IF his superiors liked him or not. To me this was a silly notion as he had been with the company almost 30 years. This was happening in 2004-2005. Eventually he left that position to teach 6th, 7th and 8th grade technology. Not knowing his diagnosis, he kept working at learning all he needed to teach. He wound up teaching almost 9 years before he could no long cover up or mask his symptoms. The day he came out of school we made the necessary appointments to eventually find his diagnosis....FTD
-
I miss...
KNITTING
-
I have found the most support from...
I have found the most support on just going to visit her and making her happy when I spent time with her.
-
I am...
I am a caregiver
About a half a year ago, my dad was slowly, but surely, adding up to all the symptoms of having bronchitis. It was extremely difficult having to see him undergo through so much denial of being sick when he as clearly was constantly out of breath, wheezing, not eating, etc. Eventually, after several days in the hospital, my dad was taken home where I was left to care for him with my mom. Together we had to make sure he was hydrated, taking his antibiotics and using his inhaler. Because of that, his asthma got worse so I believe I'll be left to care for him for sometime until he gets well again, but I don't mind. -
Would you keep it a secret?
No
I think if a family member has a diagnosis, it shouldn't be something to be ashamed of. You should tell others in order to receive the help you need when caring for the loved one. -
I’m here for...
Parent
As previously explained, I am here because I am partly a caregiver for my father. -
I miss...
The thing I miss most is when my dad didnt have to worry about taking his inhaler everywhere with him in case of an asthma/ coughing attack. Although, I know its for the better.
-
I first began to worry when...
I first began to worry when my dad was in denial of the symptoms he clearly had to his illness. We began to push him to visit the doctor, and although he did, he would never take his appointments seriously and sometimes lie about how bad he truly felt.
-
The hardest part of my day today was...
Not much goes on during the day, but if something difficult does happen, its getting him to realize the severity of his illness. He claims he's better, but it took him 3 months to get there.
-
The best part of my day today was...
The best part of the days is when my dad shows no symptoms of his illness, which means he's slowly make progress to a healthier lifestyle.
-
I didn't consider myself a caregiver until I had to...
I didn't consider myself a caregiver until I had to secretly ensure everyday that my dad was taking his antibiotics and treatments properly.
-
I have found the most support from...
I found my support when my dad was in the hospital and I had several family members visit to give us their reassurance, considering that day was so frantic and we didnt even have time to eat.
-
I have felt most abandoned by...
I felt most abandoned when none of my friends understood the reasons behind me missing school so much, which was to go to the hospital to check up on the progress of my dad.
-
The gift of being a caregiver is...
Its, in a way, a blessing being a caregiver because my dad knows that im just as there for him as he is. He's always taken care of me, so by me taking care of him, he knows im willing to do the same.
-
The biggest change I have had to make...
The biggest change I had to make was switching roles. Despite the fact that my dad still can work, move, eat and such, I simply just have to care for him in the way that I make sure he doesnt progress in his illness.
