Expert Insights for Alzheimer's Caregivers

Author Deanna Lueckenotte

Alzheimer's Days Gone By is a new book by Deanna Lueckenotte, social worker and the executive director of an Alzheimer's care facility. Lueckenotte has cultivated inspiration from both personal and professional experience dealing with people with Alzheimer's and their caregivers to pen a guide to the journey. LoveToKnow Seniors asked Lueckenotte about important aspects of managing the condition, inspiration from others, and why caregivers need to make time for themselves.

Alzheimer's Days Gone By Interview

Your grandmother had Alzheimer's. What did you learn from the experience?

I learned what -not- to do with someone with a dementia. Unfortunately, I did not figure all this out until after her death. I learned empathy for others in similar situations. I learned not to judge a personal caregiver for any and all emotions they may feel during their stages of adjustments.

I continue to learn daily from my journey with my grandmother, as well as the journeys others face currently with their loved one. Each day, I learn something from my past interaction with my grandmother, a family in the community or from the person with the disease.

As the executive director of an Alzheimer's care facility, how do you give people peace of mind about dealing with this condition?

I try to offer peace of mind to my families through education on Alzheimer's as well as other dementias. I also try to offer peace of mind through empathy and a non-judgmental view of their situation, as well as the decisions they make.

I offer respect and quality of life to the person faced with this disease by entering their reality, wherever they may be, as well as offering a failure free environment for them to thrive in. I offer my hand and heart to the families by sharing my own personal struggle to help them realize they are not alone.

Learning to Cope Better

If you could narrow it down, what three things should families and caregivers remember to help them cope more easily with someone with Alzheimer's?

  1. Educate yourself on Alzheimer's and dementia through local Alzheimer's Associations, trainings, published articles and books. Also talk with others who have experienced this journey.
  2. Plan for the future with regards to financial and medical concerns. Look into pre-arrangements, long term care insurance, power of attorney, and so on. Also, review local long-term care providers to learn your options.
  3. Find resources and support during this journey. Find respite support as well as support groups in your local area.
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In your new book, Alzheimer's Days Gone By: For Those Caring For Their Loved Ones, you outline more ways to make it through the day-to-day care of someone with this disease, and stress the importance of self-care. How can someone develop a better network so they can take care of themselves, too?

The best way to develop a better network/support system to help take care of yourself is to ask for help and accept help from others. Once you develop this mindset, you can organize your day-to-day and make time to take care of yourself.

There are also inspirational stories from loved ones and caregivers in the book. Which stories have touched you the most?

This is a tough question. All of them bring an individual "light in the tunnel" story to life in different ways. Every story pulls at my heartstrings.

Oddly, this is the first part of the book that I gathered. I used these stories as inspiration when I was feeling discouraged about writing the book and getting it published. I would go back and read these stories with tissue, and then find strength in them to continue in my journey to publish this book.

Follow Their Lead

Many non-caregivers struggle with visiting someone with Alzheimer's. What suggestions do you have?

Remember each person with this disease is still a worthy person deserving respect and dignity. Keep in mind they have developed a disease that damages their memory and sometimes changes their personality and behavior.

During a visit, leave your day-to-day baggage at the door, and do not wear your feelings on your shoulders. A visit is not about quantity but quality time. Enter their reality wherever they may be and do not argue. Talk with them about good memories from their past instead of focusing on the present. Take part in a productive, spiritual or leisure activity with them.

Anything else you'd like to add?

Families need to understand that dysfunction is normal with this disease process, as are all of the emotions they will personally experience. Caregivers need to focus on what their loved one's wishes would be, and to not feel guilty for following through with their wishes.

It will make it easier for the caregiver to go through the adjustment stages if more time is spent focusing on their loved ones wishes instead of spending all their time second guessing themselves through this process.

~Tracey L. Kelley

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Expert Insights for Alzheimer's Caregivers