Caring for someone with a neurodegenerative condition like Alzheimer’s disease can be very challenging. Dementia caregivers often face feelings of isolation, especially if they aren’t connected to a support network.

“My problem is isolation,” said a myALZteam member. “In the beginning, everyone was willing to help and would visit. Now, nothing. It’s just me and my husband, and we take Mom everywhere we go, but our lives have stood still while everyone else is enjoying life and having fun. Our lives center around what Mom can do, not what we would like to do.”

Another member wrote, “We are on a very lonely island. No one who has not walked in caregiving shoes understands the trials that are faced every minute of every day.”

Sometimes, an inspiring quote can provide a much-needed boost to get through tough times. Hearing others describe similar challenges may help you feel less alone.

We’ve gathered quotes from myALZteam members and other caregiver resources to offer support and encouragement for your caregiving journey.

1. Accepting the Disease

“The tough part is letting go of that person who once was.”

Caregivers on myALZteam have had to come to terms with the changes in a loved one’s personality, memories, and relationship dynamics. In addition to the quote above, members have shared comments such as these:

• “It is so hard to separate the person from the disease. At times, my husband of 60 years is sweet and loving. Other times, he changes to argumentative and obstinate.”
• “My husband is 75 and also losing touch with reality. Often, he isn’t sure if I’m his wife (after 46 years of marriage) and forgets who our four adult children are. It is very sad.”
• “A friend told me that the hardest part of caring for our husbands is that you have lost him, and he is now a toddler, not a man who you once knew. The truth this is!”

2. Keeping Your Promises

This poem by Michelle DeSocio, an author and advocate for caregivers, sums up various aspects of the caregiver experience.

I Will

When you forget, I will remember for us both.
When you get lost, I will find you.
When you are sad, I will be sad with you.
When the fear comes, I will comfort you.
When you cry, I will dry your tears.
When you lash out at me, I will not be angry.
When you repeat, I will have patience.
When you forget my name, I will understand.
When you can no longer eat, I will feed you.
When your legs fail, I will carry you.
When you long for home, I will be your safe place.
When your journey is ending, I will be by your side.
I will love you for eternity.
I will …

On myALZteam, members have shared different parts of their caregiving stories. Most feel caregiving is a duty they can’t refuse. “It’s not an easy road, but our loved ones deserve to have us take care of them,” one member wrote. “They didn’t ask to be like this. … Just keep reminding yourself of that.”

3. Losing (and Regaining) Yourself

“I learned that flamingos lose their color when raising their babies because it is such an intense process. Eventually, it comes back. The same can be said of caregivers.”

That quote resonated with many members of myALZteam, who replied with comments such as these:

• “Hair goes gray. And we lose our color/go pale!”
• “That just went straight into the caregiving quotes I’ve saved! (I feel like I'll never be myself again, though.)”
• “Yes, we will get our color back, but we will never be the same as we were.”

Another member used that quote to discuss how the role of caregiver had changed them: “I am not the same as I was before this caregiving. If I have colors like a flamingo, I am all white now. I am still hanging in there, and I devote this phase of my life to my husband and God, who wants me to go through this. Someday, I will gain all my color back!”

Members have described taking some time off for their own self-care and well-being. “I finally, after two years, took a respite vacation this fall for a week, which showed me what ‘normal’ looked like again!” shared one member.

Others described having trouble taking time for themselves. “I understand that a caregiver needs to take care of themselves to care for their loved one. But how do I overcome the guilt of taking off to get some time away?” wrote one member. “My daughters want me to take off to go camping with a couple of friends from church. It is a weeklong trip, and I am having difficulty accepting that it is OK to go.”

Although it’s not always possible or easy to find time to care for yourself, try not to lose sight of life beyond caregiving. Holding on to a sense of the person you were before (and want to become) can help you feel less out of place when caregiving needs change because of either the loss of a loved one or their move to a memory care facility.

4. Realizing You’re Not Alone

“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”

That quote, which is attributed to former first lady Rosalyn Carter, emphasizes the value of family caregiving. In 2020, 53 million people served as family caregivers in the United States, up from 43.5 million in 2015. This work often is done in addition to normal responsibilities, including paid work.

In 2020, caregivers spent an average of 23.7 hours a week providing care. If they live with the person they’re caring for, the number jumps to more than 37 hours. Caregiving for someone with Alzheimer’s tends to last longer than other conditions, often continuing for at least five years.

If you’re caring for someone with Alzheimer’s disease, you’re not alone. Although daily life can make you feel like you’re one person tackling the world, remember that the caregiver experience isn’t uncommon. Connecting with online support groups can help, especially when it seems like no one around you understands.

Talk With Others Who Understand

On myALZteam, the social network for people with Alzheimer’s disease and their family members, more than 86,000 people ask questions, give advice, and share stories with others who understand life with Alzheimer’s disease.

Do you have a favorite quote that helps you through caring for a loved one with Alzheimer’s? What words of wisdom can you give to other caregivers? Share your experience in the comments below, or start a conversation by posting on your Activities page.