Father’s Day and Dementia Caregiving

What happens to dad when mom is diagnosed with dementia?

If he takes on the role of primary family caregiver, dad will accompany mom on what will likely be the most difficult journey of their lives, with no experience or training to guide them. It’s not the future they dreamed of and worked hard to achieve, but they adjust to their new reality and call the kids to break the news.

As mom’s dementia progresses, dad’s new role demands all the time, energy, mental-emotional focus and patience that he can muster. In the best of circumstances, family becomes his lifeline. Adult children, siblings and cousins check in to see how things are going.

If he’s a stoic kind of guy, dad will put a positive spin on things. “Mom is doing okay,” he’ll say, “I am taking care of things.” And they’ll want to believe him.

But what if things are not okay? Dementia is an uninvited guest that refuses to be ignored and creates new challenges at every turn. For dad, caregiving can be counter-intuitive when mom no longer understands logical explanations. When mom knows what she wants to do or say, but she can’t because her brain is failing, it’s frustrating and upsetting for mom and dad.

What can a family do?

As dad begins to share what he’s learning about dementia and caring for mom, family members get a better sense of what’s happening. They grow more comfortable asking questions and offering help.

Our co-founders Chuck and Sue Berghoff are on a journey with Lewy body dementia, and Chuck has learned a lot from his experience as Sue’s husband and caregiver. He’s still learning, and he likes to share tips with other caregivers whenever he can.

  • When your loved one begins having trouble with thinking and managing basic activities of daily living, it could be a sign of dementia. Talk with your doctor. Learn about common dementia symptoms. You’ll have a better chance of recognizing them, and you can look out for each other.
  • Be aware that Lewy body dementia affects many aspects of living: thinking, memory, behavior, mood, movement, and autonomous functions. Getting an LBD diagnosis is hard to accept, but when you can put a name to it and learn what to expect, you can talk to family and make a plan together.
  • The earlier you know, the better able you’ll be to prepare for what’s ahead, put your affairs in order, and build a support team for the time ahead. As a caregiver, you have to consider how your loved one will be taken care of if they survive you.
  • By learning about Lewy body dementia you can be an advocate for your loved one
    • Step into their reality to acknowledge their feelings and perceptions rather than try to correct them or provide explanations
    • Communicate more slowly with simpler words; positive facial expressions and body language
    • Become part of the care team, communicate with doctors, nurses and care coordinators about your loved one’s challenges and medication management
  • Understanding the challenges of LBD helps overcome frustration
    • Adapt to loss of activities of daily living by focusing on what your loved one can still do
    • Be aware and be patient with fluctuating cognition, focus and alertness
    • Focus on comfort, safety and what brings joy to your loved one
  • Seek palliative care early to help you and your loved one plan, adjust, and focus on comfort and quality of life, not just on the disease
  • Ask for help:
    • Family and friends
    • Doctors, nurses and care coordinators
    • Caregiver support group
    • In-home caregivers
    • Memory care center staff
  • Practice self-care to be a better caregiver
    • Healthy meals
    • Regular exercise and good sleep
    • Scheduled time for errands and appointments
    • Social time with family or friends

According to our co-founder Chuck Berghoff, when his wife Sue was diagnosed with Lewy body dementia she decided to share her story and make something positive from her diagnosis.

“Sue’s decision gave both of us a new purpose in life. She spent nearly three years talking to doctors, nurses, university students, public officials, and families about LBD. She put her affairs in order, decided to donate her brain to research, and led our creation of an LBD research fellowship at Stanford that is funding post-doctoral research today. We all want a dementia-free world. Pursuing this vision has given us HOPE for the future.”

Learn more about LBD.

Donate to support our dementia education programs.

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