Living with Dementia: A Family's Journey

The Amazing Woman We Loved

Martha Louella was a woman who showed us love, support, faith, and the importance of family. Her presence was a beacon of warmth and kindness, shaping the lives of those around her.

The Little Changes We Noticed

At first, the changes seemed small—forgetting appointments, missing phone calls, or losing track of where she was driving. There were odd moments, like putting metal in the microwave or cooking plastic on the stove. Occasionally, she forgot the names of her youngest great-grandchildren. It was easy to dismiss these as signs of aging, but they were the first indicators of something more serious.

Adjusting to Support Her

Determined to keep her safe, I moved in to help. I was her biggest fan and ready to do whatever was needed—cooking, cleaning, and watching over her. We set up a baby monitor outside her bedroom door to alert us when she was up at night.

Unexpected Behavioral Changes

It was heartbreaking to see her behavior change in ways that felt unfamiliar. At times, she seemed manipulative—saying things that threw me under the bus. It wasn’t intentional; it was how her mind connected with what made sense to her in that moment.

Our Family’s Resolve

We were convinced that love and dedication would be enough. We adjusted as needed and believed we could handle everything without outside help. There was no emergency—until there was.

The Impact of Illness

A simple urinary tract infection triggered a rapid and severe decline. The dementia escalated overnight, bringing new behaviors and extreme confusion. The little concerns we had before seemed minor compared to the urgency of recognizing and treating her illness in time.

A Wake-Up Call: Elopement

Elopement—the act of wandering away—was something we never expected. But it happens all the time, in ways you wouldn't anticipate. It was a terrifying moment that made us realize how much we needed to rethink our approach.

Our Mistakes

We underestimated the disease and its progression. We made mistakes, including:

• Not fully understanding dementia’s progression.

• Failing to secure a safer long-term plan.

• Moving her between homes frequently.

• Not seeking outside support.

• Lacking knowledge about available resources.

• Failing to adapt to her perception of reality.

• Not engaging in meaningful interactions at her cognitive level.

• Allowing emotions to dictate decisions instead of making the best choices for her.

  
  

Our Biggest Mistake: Nursing Home Assumptions

Not all nursing homes are the same. When choosing a facility, consider:

• Touring facilities unexpectedly.

• Prioritizing quality over convenience.

• Checking for a dedicated dementia care neighborhood with trained staff.

• Looking for activity supplies that ease a dementia patient’s mind.

• Ensuring staff understands your role and can offer recommendations.

• Confirming dementia care certification and behavior management approaches.

• Observing if the environment fosters interaction and a homelike setting.

• Watching how residents engage—do they seem comfortable and at home?

• Assessing how the facility handles unexpected emergencies.

  
  

The 10-Year Journey with Dementia

Dementia is often harder on the family than on the person experiencing it. Families must come together, making selfless decisions based on present needs rather than past expectations. The key is to always do what is best for the person with dementia, even when it is difficult.

• Utilize available resources.

• Trust in expert advice.

• Join support groups, even if they are online.

  
  

If Placement Becomes Necessary

If the time comes for placement in a memory care community, stay involved:

• Attend events and support groups.

• Request regular care plan meetings.

• Ask for creative solutions when challenges arise.

• Share your loved one's life story with staff.

• Call to check in when you need reassurance.

• Let go of guilt—if you have used your resources and made the best decision possible, you are doing the right thing.

  
  

Cherishing Family Moments

• Learn how to engage with your loved one in a way that meets their needs today.

• Adapt to their reality—some days they live in the present, other days in the past.

• Accept that they truly don’t remember when they say they can’t.

• Let go of the need to correct them and instead meet them where they are.

• Treasure every visit and live in their moment with them.

  
  

Resources for You

• Alzheimer’s Association: www.alz.org

  • Support groups, literature, and educational workshops.

  • Caregiver resources: www.alz.org/care.

• Local Alzheimer’s Support Group

• Department of Health and Senior Services: www.health.mo.gov/seniors

  • Government programs, nursing home information, and educational resources.

• Elder Care Attorney: Plan for the long journey ahead.

  • Medical Planning: Establish a Living Will and Power of Attorney for healthcare.

  • Financial Planning: Know your resources, including Medicaid, VA benefits, and LTC plans.

• Medical Support: Speak to a physician about concerns and ask for referrals to a neurologist specializing in dementia.

• Life Story Documentation: Record their memories and milestones to share with future caregivers.

• Memory Box: Create a box of personal items to provide comfort and familiarity.

• Adapt to Daily Changes: Learn to assess their needs each day.

  • Are they restless? Offer finger foods and activities.

  • Are they living in their younger years? Reassure them about their children.

  • Do they believe in their reality? Adapt rather than correct.

    
    

Knowing When to Seek Help

• Caregiving can take a toll on you—don’t hesitate to pull in support.

• Use home health services for difficult tasks like bathing.

• Rotate caregiving responsibilities among family members.

• Utilize adult day care and respite stays.

• Start planning for long-term care before a crisis arises.

• Memory Care Solutions St. Louis: www.memorycarehs.org/our-services

  
  

  

  
  

Final Thoughts

Dementia is a journey that requires patience, adaptability, and love. The most important lesson we’ve learned is to embrace each day as it comes, ensuring that our loved one feels safe, understood, and valued. With the right support and mindset, families can navigate this journey with grace and resilience.