Community Views: The Isolation That Follows an Alzheimer's Diagnosis
Last updated: July 2023
It is common for people living with Alzheimer's disease to feel alone in their journey. The symptoms are hard to bear, and many people lack support as well. Caregivers may also feel isolated. People who have not dealt with Alzheimer's often lack knowledge about the disease.
Many people with Alzheimer's have found ways to cope. We reached out to community members on the AlzheimersDisease.net Facebook page. We asked, "Who has spoken to your friends and family members about the isolation that comes with Alzheimer's?"
Over 70 community members told their stories of how Alzheimer's changed their lives. They shared the emotions they felt following diagnosis.
Disconnection from friends and family
Many had problems keeping close with loved ones. Not having the usual support makes the journey even harder. It can be hard for the person with Alzheimer's and their caregivers to adjust to new routines and habits. Outsiders do not understand what you go through every day.
"You have no idea until you live this firsthand, as the people disappear, including family, and friends, no calls either!"
"The problem is you can't force someone to be around or understand that this journey is so cruel. You are barely surviving day-to-day."
"Friends no longer visit or call. That was the hardest thing for me to accept."
Caregivers spend most of their time looking after people living with Alzheimer's. They can become lonely because of their obligations. Other people do not understand the effects Alzheimer's can have on caregivers' daily lives. It can be a stressful and life-changing task.
"No one gets it til they become a 24/7 caretaker with all the ups and mostly downs from moment to moment. Thank God, we caretakers have each other."
"Isolation from family, friends, life, and church is so devastating not only to the person with Alzheimer's, but also for the family caregivers!"
"Just a nightmare for both the caretaker and the afflicted person."
"Only a person who has been a caregiver or has had a family member with this horrific condition can understand what it's like."
"My weekly visit to the grocery store was like a 1-hour vacation each week."
This or That
Whether you are living with Alzheimer's disease or caring for a loved one, do you feel isolated this journey?
Lack of understanding
Having Alzheimer's is a struggle that affects your daily life. Many family members do not understand the adversity you face. Many people living with the disease believe you have to feel it firsthand to understand how it affects your life.
"It is very hard and family does not understand. They might be around my husband for 15 minutes or so and think she (me) must be exaggerating seems alright to me. I don't think doctors even understand! When you are there 24/7 it's a different story!"
"A sweet friend told me how hard it was with her husband, and I truly didn't understand until I went through it with my husband. It's up to us who have been through this disease with a loved one to support others and get the information out there to others."
"People visit those with other terminal debilitating diseases, it just seems with this one, dementia, Alzheimer's, everything about it is totally different! My husband left July 23, 2022. Prayers for all of you who are traveling this path."
"Nobody understands until they go through it. It's good and bad days and nights."
Thank you for sharing your experiences! Alzheimer's is hard whether you are the person who has it or you have a loved one with the disease. We appreciate the community members who chimed in.
We hope this promotes awareness of the loneliness that comes with Alzheimer's. Listening to each other's experiences helps us remember we are not alone.
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