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Caregiver Contest Finalist Wendy: Tips for Lewy Body Dementia

Aimee Sharp
Author | Shield HealthCare
09/19/18  4:35 PM PST
Lewy body dementia

Wendy P. is from Pennsylvania, and was one of forty finalists chosen out of the over 1,000 entries to our “What Advice Would You Give to a Fellow Caregiver?” Contest. You can find our grand prize and runner up winners here.

What advice would you give a fellow caregiver?

As a mom of three, daughter and wife, I have my hands full. Eight years ago, I lost my dad, and my mother was devastated. I don’t think she has ever gotten over losing him. I took over many of his responsibilities at that point to help out my mother. Three years later, my vibrant, caring mother was diagnosed with Lewy body dementia. I have been a caregiver to her since then.

At first it was simple things, paying the bills, bringing her meals, helping with appointments. After it became apparent she shouldn’t be driving, we took her car keys and she was much more dependent on me. As hard as it was, the diagnosis made things easier. Things she did that frustrated or confused us, suddenly had a reason. It made caregiving much easier as you had a sense of understanding and more patience.

Time has taken more and more of my mother away — at least the mother I knew – and replaced her with someone who still resembles her but lacks basic skills and reasoning. Being a caregiver is hard, scary and you never quite know if you are doing it right. There is no manual. There is no right or wrong.  You can read and research, but all the books in the world cannot prepare you for what lies ahead.

Lewy body dementia is known as the “roller coaster dementia” because that is its nature — highs and lows. Never sure what to expect around the next corner.

As a caregiver, you need to make sure you are an advocate. My mother can no longer make simple decisions, such as what she wants for lunch, let alone big decisions. You need to be there for them, as you are now the parent. Thank goodness, when my father died, my mother had gotten her will together and the lawyer suggested she get papers drawn up to allow for a power of attorney (POA) if she became incapacitated. That was one of the smartest things she could have done at the time. If we had waited until her diagnosis, she may not have had the ability to do so. Without the POA in place, things would have been much more difficult. I am now able to make decisions for her care, do her banking, sign important documents, etc.

As a caregiver, you need to be patient. Many of the things she does, or can’t do, would make no sense. Even a toddler learns not to touch something hot if they do it once. Those with dementia begin losing their reasoning skills, losing their ability to do everyday tasks, losing their ability speak, losing memories, even telling time is an issue. Without patience, a person caring for them could get frustrated, yell and want to just walk away. But it isn’t mom’s fault, she doesn’t realize she is calling at two AM — she truly thinks it is two in the afternoon. She doesn’t realize she has asked the same question 15 times in the last hour. She can’t help yelling and screaming at you, and you yelling back will just make things worse. Patience – take a deep breath, smile, and think of how you would feel if positions were reversed. Would I want to be yelled at, made to feel bad?

As a caregiver you need to be flexible. Things don’t always go as planned. Things take longer than they normally would. Confusion sets in and you need to be able to go with the flow. Too much activity can make mom uneasy. She gets tired quickly. Things need to be done at their pace and be ready to switch gears as needed. The goal is to keep them as happy and calm as possible.

Over all, be there. Let them know you love them, let them know you will always be there. Hold their hand, sing with them, laugh with them, read to them, play simple games – even if you need to bend the rules. Be present. They may not remember you, but they still feel love. They remember they enjoy your company and that you make them happy. Smile, stay positive and lots of hugs.

Write you own story — every journey is different.

Click here to head to the contest home page and read more advice.


Finalists were selected by the Marketing Team at Shield HealthCare. Those finalists were submitted to a panel of independent judges who picked three grand prize winners and five runners up. The judges included: Sandra Mitchell, Award-winning KCAL 9 news anchor and breast cancer survivor, and the Landers family: actor and comedian David Landers (“Laverne & Shirley”) who is living with MS, his wife Kathy and his daughter Natalie (“The Middle”). Click here to learn more.