Community Views: Caregivers Working (or Not Working) Together
Last updated: February 2023
An Alzheimer's diagnosis often causes a shift in family dynamics. Ideally, family members work together to meet their loved one's changing needs. However, it can be an overwhelming task as Alzheimer's progresses and your loved one needs more help. Sharing Alzheimer's caregiving responsibilities, and figuring out how to divide up tasks can be challenging.
To learn how you accomplish this process, we turned to the AlzheimersDisease.net Facebook page. We asked community members to tell us: "What are tips for sharing caregiving responsibilities with other family members?"
Many of you acknowledged not having any shared support. Others shared best practices for your family.
Offers of help from friends and family are often general, such as, "If there's anything you need, let me know!"
Preparing concrete answers for that comment removes the burden from you. Needing to reach out in the future increases your to-do list. Mentally or physically writing down specific tasks is helpful. You can give a choice or assignment when approached.
"Write a list with little tasks and larger tasks. Include housekeeping, grocery shopping, doctor appointments, pharmacy runs, yard work, laundry, changing sheets, etc. I used to carry the list with me. When others would ask what they could do, I would pull out the list and say, 'Here, what can you do?'"
"Be clear and specific about the kind of help you need. Learn to say, "I need you to [blank].'"
Keep the lines of communication open
Communication is key when caring for a loved one. Talking, texting, or video chatting help ensure everyone is on the same page.
If dialogue becomes strained, seek out a mediator. A neutral third party, such as a family friend or therapist, can help. Everyone needs to hear one another. Making decisions and dividing tasks requires sensitivity and input from all invested parties.
"We had open lines of communication. A phone call and help was there."
"Work together, be honest and open-minded, and show lots of love and support each other."
"Conference calls with family members to discuss doctor's appointments, caregivers, health changes, concerns, etc. A calendar with appointments and who is available."
"Family members are not mind readers."
Take care of yourself
When caring for a family member with Alzheimer's, it is easy to feel burned out. The constant demands on your time and attention are exhausting. Taking a break helps you recharge. Whether asking a friend, a family member or hiring a caregiver for a few hours, self-care is vital.
"Be sure and take a break. It could be as little as the afternoon, but a full day is much better."
"Family caregivers need support from friends and neighbors too. Coming over for short visits with the dementia patient and listening to the woes of the caregivers helps a great deal."
Navigating caregiving without support
Not everyone has help with a loved one. Many of you shoulder the burden yourselves without any support. The hurt and exhaustion came through clearly in your words.
It is an enormous task to make the decisions, absorb the financial impact, and be the caregiver. Many of you do so while working full time. Our hearts go out to each of you navigating caregiving without support.
"I'm the only one."
"You can't depend on family. It's a do-it-yourself job, especially if you're the only girl."
"What other family members?"
"I did not get 1 ounce of help with my mom, and I was there until the end with both parents - alone."
"Our family member left town when we started asking for a little help; that was 10 years ago."
"Family has become unavailable since the diagnosis."
We appreciate the wisdom you shared. We hear the hurt and anger from you who feel so alone; navigating caregiving without support is no easy feat. Caring for a loved one's evolving needs with Alzheimer's is challenging. Thank you for sharing so honestly with the community.
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