Dear Donna:
I’ve been caring for my mom since she was diagnosed with mid-stage Alzheimer’s almost three years ago. While I’m grateful to have her in my home, every day has a new challenge. As the disease progresses, she continues to lose the ability to care for herself. For a proud, independent woman like my mother, it is very tough to watch.
Do you have any advice for managing the emotional side of caregiving for a loved one with dementia? The emotional struggle of Alzheimer’s is as difficult for me as the physical challenges of trying to care for her.
Sincerely,
Cindy in Ann Arbor, MI
Alzheimer’s Caregiving: Dealing with Difficult Emotions
Dear Cindy:
The struggles you are navigating are so common with this disease! Alzheimer’s experts often refer to it as the long good-bye for this reason. Watching a parent or other close loved one struggle with Alzheimer’s disease is very difficult. The gradual decline in memory, cognitive function, and ability to care for themselves can feel like losing the person you’ve always known. The emotional toll can be overwhelming for family members.
Navigating this tough journey involves understanding the disease, acknowledging the emotions you’re experiencing, and finding ways to cope with the changes while maintaining a sense of hope and connection.
Understanding Alzheimer’s Disease
Alzheimer’s disease is a progressive degenerative brain disorder that affects everything from memory to physical coordination. For family members, the change can be hard to accept. This is especially true when a parent begins to lose their ability to recognize familiar faces, remember important events, and care for themselves.
The emotional impact can start with shock and disbelief as you notice changes in your parent’s behavior. There’s often a sense of mourning for the person your parent used to be, which can be difficult to reconcile with the desire to remain hopeful.
Feelings of Grief and Loss
One of the most challenging aspects of caregiving for a parent with Alzheimer’s is the grief that comes with watching a loved one slowly decline. This grief can be complicated because it’s not just about the eventual physical loss, but also the emotional and cognitive changes.
You may grieve for the conversations you can no longer have, the memories you’re unable to share, and the parent you used to know. This emotional mourning may come in waves, often without warning, and it can feel isolating.
It’s important to acknowledge that grief doesn’t only occur after a loved one has passed away; it can also be a constant companion as you navigate the changes Alzheimer’s brings. This is known as anticipatory grief.
Feelings of guilt, anger, frustration, and helplessness are also common. These emotions often arise because of the overwhelming responsibilities involved in caring for a parent with Alzheimer’s. You may question if you’re doing enough or feel angry at the disease for robbing your parent of their personality and abilities.
Coping Strategies
As a caregiver, it can be easy to focus entirely on your parent’s needs. That can lead to burnout. Taking care of your own emotional and physical health is essential:
- Set boundaries: Set boundaries for what you can and can’t do as a caregiver. This will be important as your mom’s disease progresses. When tasks are outside your comfort zone, ask for and accept help from friends or professionals.
- Stay connected: Stress and sadness are very real emotions that caring for a loved one with Alzheimer’s causes. Try to stay connected with friends and hobbies that bring you joy. Utilize respite care to give you time to do so, if necessary.
- Join a support group: Talking with peers who understand and share this journey can be a big help. You’ll likely find in-person opportunities in your community. Virtual support groups can also be helpful.
- Enjoy your mom: While your mom may not remember past events or recognize you as she once did, maintaining a sense of presence and emotional connection can provide comfort. Playing familiar music, dancing together, or looking through photographs are some ideas to try.
Finding Hope
Despite the emotional struggle, it’s important to focus on the moments of hope and joy you experience. These moments, though often fleeting, remind us that the person we love is still there, even in a different form. It might be a smile, a laugh, or a moment of recognition that makes all the emotional pain worth it. Try to be present for those.
In the end, dealing with a parent’s Alzheimer’s is about learning to embrace both the challenges and the small victories. It’s about finding ways to keep love and compassion at the forefront of this journey, even when the road ahead is unclear.
I hope this is helpful, Cindy!
Kind regards,
Donna