COMMENTARY: Family caregiving is a team sport

Every November we call attention to Alzheimer's Awareness Month. And ironically, or perhaps not so, it is also the month we recognize family caregivers. With more than five million people affected by Alzheimer's, and over 10 million family caregivers providing care for this and a host of other illnesses impacting loved ones, the two are entwined in a paradoxal twist. Without family caregivers, people living with Alzheimer's and related dementias are bereft of the custodial care that enables one to remain safely at home for as long as possible. Caregiving for loved ones is often 24/7, thus, not surprisingly this year's family caregivers theme is Caregiving Around the Clock. But sadly, it can come at the cost of the family caregiver's own financial, social and physical health.

With predictions for the number of people living with Alzheimer's expected to surge as baby boomers "come of age," the caregiving scenario is further impacted by a dramatic shortage of front-line caregiving staff across the healthcare spectrum. Now more than ever, family caregivers are indispensable for coordinating, overseeing and very often, providing their loved ones' caregiving.

Education and support are therefore essential to sustain and reinforce these family caregivers. Yet with all the demands on family caregivers to juggle these responsibilities along with raising children, working part or full time, and managing a life, where do they find the time to learn and get support?

Many take to the internet to find information, often in the wee hours of the night and/or morning when there is finally some time and peace. But within that plethora of information flooding through cyberspace, what is legitimate? And, who has time to sort it all out and find the true gems that help?

• Discern which online sites and sources are valid by examining their "address" - sites ending in ".org" are often non-profit organizations specifically designed for support.

• Companies listed at the top of a search may be ads, which doesn't necessarily mean they are best. (Labeled "ad" or "sponsored".)

• Go to disease association official websites: e.g. alz.org; aftd.org; lbda.org; apda.org.

• Many disease associations also offer 1-800 helplines 24/7.

Support groups offer another alternative. Comprised of other family/friend caregivers, people share similar scenarios, challenges, and frustrations. Who better to learn from than people experiencing the very same things?

• Attend support groups with trained, certified facilitators to obtain a balance of personal and professional input and direction.

• Make the time for monthly support groups: it's perhaps the most effective way to survive caregiving.

Building a caregiving team is imperative. Don't be discouraged or derailed when other family members aren't available to help with the actual hands-on caregiving. There are many ways to help.

• Compile a list of necessary tasks such as food shopping, bill management, laundry, yard work, financial oversight, transportation to the doctors, etc.

• Offer the list to family members and let each choose what he/she can do.

• Don't assign and don't judge!

Augment the caregiving team with neighbors, friends, church acquaintances. When people ask "what can I do," caregivers are often so overwhelmed they can think of nothing. As daunting as it may be, identifying tasks that can be given away when someone offers to help could be the caregiver's saving grace.

• Draft a list of everything the caregiver must do for him/herself, the household, and the person for whom they are caring.

• Circle, highlight or transcribe those tasks to a separate list and keep it handy to provide choices when someone offers to help.

Most importantly, ask for and allow help. Doing so does not mean one failed at caregiving or isn't doing a good job. Just the opposite. Any wise caregiver knows it takes a team. Draft more players! Seek professional resources, education and support. Care for the caregiver too.

Joan Wright is a certified dementia practitioner (CDP) and certified Alzheimer's Disease and Dementia Care Trainer (CADDCT) through the National Council of Certified Dementia Practitioners (NCCDP). As NVNA and Hospice's Dementia Care Specialty Program Director, Wright develops and teaches dementia curriculum, consults with agency clinicians and staff around dementia caregiving issues and challenges, and offers families and caregivers guidance and coaching services.

Joan Wright is a certified dementia practitioner (CDP) and certified Alzheimer's Disease and Dementia Care Trainer (CADDCT) through the National Council of Certified Dementia Practitioners (NCCDP). As NVNA and Hospice's Dementia Care Specialty Program Director, Wright develops and teaches dementia curriculum, consults with agency clinicians and staff around dementia caregiving issues and challenges, and offers families and caregivers guidance and coaching services.

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