The Caregiver’s Tightrope: Balancing Dementia, Family, and Self-Care

A dementia diagnosis affects the entire family. Finding a balance between work, family life, and caring for a parent with dementia can be mentally, physically, and emotionally overwhelming.

Several factors, including your relationship with your parents, family culture, siblings, the type of dementia, and finances, can affect your ability to prioritize yourself while successfully caring for your loved one.

Dementia is a complex disease. Its symptoms and progression can vary from person to person, making it difficult for families and even healthcare professionals to predict and manage effectively. Fortunately, there are tips and resources available that can help individuals and their families navigate this arduous journey.

In this article, we’ll provide insights on managing difficult emotions and share practical strategies to help you balance caregiving, family responsibilities, and self-care.

The Caregivers Dilemma

Dementia is a complex and progressive disease characterized by a range of symptoms, including memory loss, personality changes, and behavioral changes.

These symptoms and the progression can vary from person to person, making it challenging for families to understand and anticipate how much this responsibility will impact their lives.

When a parent is diagnosed with Alzheimer’s or other forms of dementia, many children often take on the role of caregiver out of a sense of obligation. Caring for a parent with dementia can be an emotional rollercoaster. Family caregivers frequently experience guilt over being unable to properly care for a loved one while juggling work, home, and family responsibilities.

In addition, many caregivers experience stress from feeling overwhelmed and depression from watching a parent struggle with the symptoms of this devastating disease. It’s essential for caregivers to find ways to manage the responsibilities of caregiving while prioritizing their well-being and happiness.

Tips for Balancing Caregiving, Family, and Personal Needs

Accept You’re Going to Make Mistakes

There is no manual for caring for a parent with dementia. You will make mistakes (maybe even more than one), and that’s okay. Mistakes are opportunities to learn.

The best you can do is to get as much information as possible and make decisions that are best for yourself, your loved one, and your family. Caregiving is challenging, especially for a parent. If something doesn’t work, give yourself some grace, pivot, and move on.

Not Everyone Will Have the Answers You Need

Not everyone will have the answers to your questions, not even your doctor. There are many elements and unknowns when it comes to an Alzheimer’s or dementia diagnosis. You will have questions on symptoms, disease progression, available treatments, and professional care.

To get the answers to all of your questions, you will need various resources, including your doctor, friends, family members, and support groups.

Talk to Someone

Individuals with dementia will eventually need help with bathing, dressing, grooming, toileting, and eating. Watching a parent navigate the symptoms of this devastating disease can take an emotional and physical toll on their children.

According to the Alzheimer’s Association, 59% of family caregivers of people with Alzheimer's disease or other dementias rated the emotional stress of caregiving as high or very high.

It's important to speak with someone if you’re feeling stressed, whether it’s a therapist, close friend, or supportive family member. In addition, support groups are excellent resources for asking questions, finding solutions to common problems, and having someone to talk to who can relate to your situation.

Manage Expectations

Dementia is a complex disease. Its symptoms and progression can vary from person to person, making it difficult for families and even healthcare professionals to predict.

Expecting everything to always be easy or go smoothly will lead to stress and disappointment. Manage your expectations by writing them and discussing them with a friend or family member.

Ask yourself:

• What are your current and future expectations for yourself and your loved one?
• Are they realistic?
• Can you accomplish them?
• What adjustments do you need to make?

Your expectations need to be flexible. Take things day by day. There will be challenging times and unexpected situations.

Know the Financial Status of Your Loved One

Speak with your loved one about their finances before the disease progresses. There’s a lot of financial responsibility and decision-making that goes along with caregiving. Knowing this information is critical.

Consult with their financial advisor, insurance professional, and attorney. What are your options for assistance with caregiving? Can you afford full- or part-time in-home care, respite services a few days per week, or a memory care community?

Explore Resources

There are many resources to help individuals and families dealing with Alzheimer’s disease or other dementias. The following helpful resources can be invaluable when you need them:

• Alzheimer’s Association 24-hour helpline
• Dementia support groups
• Your church
• Respite services
• Online communities
• Educational programs for dementia
• Friends are family members who can help with caregiving

Wrap-up

Choosing to care for a parent with dementia is a noble and massive undertaking. It’s important for family caregivers to anticipate and understand the gravity of this responsibility.

Although there will be challenges and uncertainties, providing care, support, and love to a parent during this difficult time can be extremely rewarding.

To learn more, listen to the “The Caregiver’s Tightrope: Balancing Dementia, Family, and Self Care” episode of The Disappearing Mind, an award-winning podcast hosted by National Dementia Coach Dawn Platt that helps listeners navigate along their personal journey with dementia through exclusive and direct perspectives of people diagnosed with the disease, their caregivers and experts in the field.