Author & carer Vicki Tapia: Advice from my own experience

Nov 4, 2019

Author & carer Vicki Tapia: Advice from my own experience

Author & carer Vicki Tapia: Advice from my own experience

Posted in : Personal Experience & Interviews on by : Giulia Melchiorre

Vicki is the author of two books, and a co-founder of AlzAuthors. She cared for her parents, when they were diagnosed with dementia and supporting families affected by dementia has become her passion.

What is your advice for families living with dementia?

“I believe the first step is to learn all you can about the disease in order to know what to expect. Although it is different for every person, there are some disease mile markers that help define the journey. Personally, I wanted to know what to expect down the road in order to prepare. It’s important to have the powers of attorney—both medical and legal—as well as care plans in place. Ideally, this can be accomplished while the affected person still has cognition and can make their wishes known. Have everything in writing.

I’d like to offer up the importance of self-care with the wish that caregivers take it seriously. You are important. What you do is important. If you ignore yourself, the walls implode and stress takes over, resulting in a downward spiral in your own health and well-being.

I grieved for years as I watched my parents’ decline, sometimes wondering if I’d live through it myself. It’s so important to take time for yourself, even though it just seems like too much to deal with. When overwhelmed, I think it’s typical for self-care to be the first casualty.

I’m sure everyone knows that if we don’t take care of ourselves, everyone suffers. Join a support group. If the first one you attend isn’t quite right for you, try another one. It’s so important to have someone to talk with and someone on a similar journey can be especially meaningful. Have a life outside of caregiving. Stay connected socially. Exercise regularly. I kept a journal, which was my primary choice for coping. Find yours.

Remember, eventually the time will arrive when your loved one will still be in this world, but not of it. Finding a point of loving acceptance, taking life day-by-day and meeting your loved one where they are. Reach out to them when they can no longer reach out to you. Touch is so, so important. In the latter stages of their journeys, my parents thrived on touch.”

Is there anything you wish you had known when you were looking after your parents?

“There are many things I wished I’d known when caring for my parents. I’m very pleased to see so many resources, such as those offered through CogniCare.

Through my work with AlzAuthors, I’m familiar with several books offering strategies for interacting with the person affected by dementia. If you’re looking for the type of caregiving book that teaches helpful techniques on how to live and communicate with someone affected by dementia, please check out our AlzAuthors bookstore. I do regret not knowing these techniques.

Truly, I wish I’d had access to both CogniCare and AlzAuthors resources in my life for the support, information and connection.”

What are the positives you took away from your experience with dementia?

“I think I learned a lot about myself and reached depths within myself that I didn’t know existed. I learned how to be more patient. I’ve eventually learned to let go of the guilt and recognize I did the best I could with the tools at hand. I was there when each of my parents passed and learned what a beautiful experience death can be. I learned it’s not something to fear, but merely a crossing over to a new dimension. And you know, in my heart, I still have conversations with my mom.”

Find out more about Vicki and her work here.

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