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Gail Weatherill, RN has specialized in the care of people living with dementia and their families for the past twenty years. She is a Board-certified Alzheimer’s Educator, runs the “Alzheimer’s and Dementia Caregivers Support Group” on Facebook with over 50,000 members and has now published her new book “The Caregiver’s Guide to Dementia.” In an interview she did with The WAM Weekly, Weatherill explains why a focus on the caregiver’s wellbeing is critical, what has changed in the time of COVID-19, and how her new book is different from other caregiving guides.

WAM: The description of your book says, “When caring for someone with dementia, your own mental stability can be the single most critical factor in your loved one’s quality of life.” Why is that, and how do you recommend a caregiver best focus on their own wellbeing?

Weatherill: With most diseases, quality of life hinges on good medical care. But with Alzheimer’s Disease (AD), medical science currently has little to offer. It’s a caregiver’s words and actions that have the greatest effect on the person with AD.

Every caregiver action leads to a reaction from the person with AD. By choosing our words and actions, we can decrease negative and increase positive reactions in our loved ones. We call that the therapeutic use of self. But controlling our words and actions requires mental wellness.

The best we can do for our loved ones is to guard our own mental health like their life depends on it. Because in many ways, it does. Experienced caregivers often say that as their own mood goes, so goes the mood of their loved one. We can’t burn out ourselves without negative effects on our loved ones.

This is where an ounce of prevention pays off in spades. Hoping “it won’t be that bad” and waiting to act often ends with avoidable heartache. There are as many ways to promote one’s mental wellness as there are personalities. But there are a few I almost always recommend.

Identifying potential helpers, connecting with other caregivers, and preplanning for breaks are critical. Research shows that learning and practicing mindfulness-based stress reduction increases caregiver resilience. It can also delay the need to place a loved one in facility care.

Facing Alzheimer’s in a loved one can be the mental equivalent of getting hit by a bus. We wouldn’t try to face such a trauma without professional help. Working with a therapist or social worker to approach inevitable changes can benefit the caregiver and the recipient.

WAM: What advice can you give to caregivers on how to explore leisure activities with loved ones during the time of COVID-19? What’s safe? What’s beneficial?

Weatherill: Many caregivers tell me that the isolation required with the virus is what they’ve been living for years. Some have had to make only minimal changes. For others, keeping a loved one engaged in the absence of groups is a new challenge.

A good place to start is an online search for “cognitive stimulation activities”. There are ideas for groups that can be modified to one on one. Reminiscence therapy can focus on “how did that feel?” rather than only the story of what happened.

Getting outside, even for just five minutes can help. Try a new recipe with multiple steps including measuring. Word games or puzzles are appropriate for some. The personality of our loved one and the level of their disease have to dictate our choices.

These are stressful times for all of us. We can’t provide everything for our loved ones that we could before the virus. Caregivers can practice self-care and avoid unnecessary pressure to do it all right.

WAM: What makes your book different from other caregiving guides?

Weatherill: It’s written by a nurse! Most guides are from social workers, former caregivers, therapists, or physicians. I wanted to combine medical information with common sense and compassion.

The gold standard of Alzheimer’s care guides is The 36-Hour Day by Nancy Mace and Peter Rabins. That book is now in its fifth edition and has helped millions. But at 416 pages, it can intimidate someone new to the subject.

My goal was to create a guide with information that is easily accessed and ready to apply “right out of the box”. So The Caregiver’s Guide to Dementia is under 200 pages with a lot of bullet lists sorted by topic.

Whether a caregiver is dealing with a bathing issue or what to ask an elder law attorney, there’s a list for that. If the reader has more time, they can read the reasoning behind the list. But when Dad is swinging from the chandelier, caregivers just want directions.

The book’s emphasis on the well-being of the caregiver is fundamental. A large majority of caregivers are women, a group socialized to always put the needs of others above their own. And to believe saying no or getting angry are signs of selfishness. All caregivers need reassurance that being human comes with this job. They need to hear “when you lose it with your loved one”, not “if you lose it with your loved one”.

The scope of the book is from twenty years of both professional and personal dementia care. I’ve also managed a closed Facebook group for dementia caregivers for the last six years. The 52,000 members of that group are my inspiration as they care for loved ones through thick and thin. Their daily realities with precious little help or support are what keeps me writing. The wolf is at their door every single day, and the world needs to step up now.

Want to learn more from Gail Weatherill? Check out her new book, “The Caregiver’s Guide to Dementia” here.

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