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Caregiver Contest Finalist Wendy: Tips for 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.


2Caregiver Contest Grand Prize Winner Kathy: Go Electronic


Kathy M. provided the following biography: ” I live with my two sons, husband, and dad (ages 16 to 96) in the mid-Atlantic area. After a job layoff in my field of advertising, various family members became ill, and I transitioned into the role of caregiver. My dad moved in with us nine years ago and was doing well until suffering a stroke in 2018. In addition to assisting my dad, I try to keep active through photography, painting, writing, taking occasional freelance jobs, and helping my husband with property renovation/rentals. And having a catch with my sons!”

What tips do you have for care at home?


You may already know the convenience of ordering meds and health aids online, or asking Siri/Echo/Alexa to set your alarm. But have you heard about mental health chat bots, and artificial intelligence used for robotic companions (including cats!) for seniors?

You and I may not be ready for that. My single tip, though, is this: Go electronic!

For patients or loved ones in need, it’s priceless.

My 96-year old dad doesn’t travel much anymore, so he really looks forward to Skype chats with my brothers. We plug a gamer’s headset (perfect for the hard of hearing) into his iPad and set up the calls.

The iPad also allows my Dad to indulge in his eclectic interests: line dancing, old comedy skits, civil rights, Cuban jazz. Online streaming services like Netflix offer documentaries and nature programs as well as feature movies.

We also use the library app Overdrive for free borrowing of audiobooks, eBooks, current newspapers and magazines. No overdue fines!

For caregivers, electronics are a game-changer.

My cell phone is handy not only for keeping the phone numbers of Dad’s doctors, but also for snapping a pic of that itchy spot on Dad’s back, so he can see it. And I sometimes use voice memo (installed on most phones) to easily record important medical conversations.

Medicines – his and mine – are tracked in Round Health app, which alerts me when we need to take them. This also comes in handy for providing a current prescriptions list at appointments.

Stray pills found on the countertop? No problem. I log onto drugs.com, type in the color, shape and lettering, and their “pill identifier” provides the name and strength of each pill.

Another app called Next Door is ideal for seeking anything from highly-recommended local respite caregivers to used scooters.

On my computer, I keep logs of Dad’s health episodes. And I’m always looking on the internet for the newest health and safety aids, relying heavily on caregiver/patient reviews.

Electronic gadgets have become more user-friendly in recent years. A security camera such as Nest is easy to install and can monitor activity in a room, providing peace of mind whether you’re upstairs or outside, via your cell phone. And Xbox has cool customizable adaptive controllers for differently-abled gamers.

To cope with caregiver burnout, I belong to some private facebook pages and chat boards. There are all kinds, specific to the illness or what role you’re in, for example. Some are faith-based; some, like Reddit posts, are more raw. You might try a few before you find one you click with. They are good places to vent, to give and receive advice, and even to make friends.

The possibilities are endless. I’m learning new tricks weekly (all while keeping Dad in sight!). You and I may never use online AI counseling or buy a robo-kitty that purrs. But truly, electronics is gift of connection, linking you and your loved one to the world.

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