In Support of Caregivers

Our journey began nearly seven years ago. 

There is no normal for how long one is a caregiver. But actually saying that number makes me realize how much we have been through.

The word caregiver was foreign to me; the idea of dementia in our family never crossed my mind. We were newly retired, ready to tour the world; well, at least we had purchased our comfy touring vehicle to see Canada, coast-to-coast.

But within weeks, our life changed dramatically when My Love was diagnosed with mild cognitive impairment. I had no idea what being a caregiver meant. Over the years, I learned my role, played my part as best I could. But there was much to learn and, as always, so many beautiful people helped us, supported us, along the way.

Lauren Gravitz, science writer, explained one perspective on the evolving role of caregiver in her article, To Manage Dementia Well, Start With The Caregivers, of September 15, 2018, on the National Public Radio, Inc. website, https://www.npr.org/ : 

“As more people survive into their 80s and 90s, there are more people living with Alzheimer's and other dementias than ever before. And the burden is one that primary-care physicians can't handle alone.”

So, while scientists are working toward new discoveries, while current physicians are keeping up with knowledge, and even while new physicians move through the medical systems, the number of those with dementia diseases keeps increasing.

The number of family members being called into a caregiving role is swelling at the same rate; all the loved ones, anywhere along the dementia disease spectrum, still need care. Appeals for caregiver support is growing parallel, and at the same exponential rate, as we see with dementia and caregivers.

Ms. Gravitz continued her report on the interview with Helen Kales, M.D., Program for Positive Aging, University of Michigan. "We realized we needed to do something different," Kales says. "We just can't train enough physicians to provide dementia care. Instead, we need to take the daily treatment and management of these patients out of the hands of physicians and put it into the hands of the caregivers themselves."

Boom! 

Now those of us who are unprepared, untrained, and still aging, will become the lead caregivers.  The fallout from that eventuality will depend on funds and programming in geographical areas. 

Definitely, this newer thinking elevates and amplifies the urgency for caregiver support one-hundred fold! But in these days of budget cuts, it is likely that added relief will be coming from support we can co-create.

Caregiver support groups were never more important.

In the seven years since My Love’s diagnosis, many more  vulnerable and inexperienced caregivers have joined the front line of the dementia battle. Many more are alone and afraid.  Countless don’t recognize their situation; some even deny it. Others don’t know where to turn. The need for meeting with a support group and to develop lifeline connections is more essential now than ever.

Caregivers, aging right alongside their loved ones, can not continue to be responsible for care without education, without training, without support from different sources. While every offered moment of respite is a welcome relief, more substantial support services are needed to encourage and assist caregivers, or they will be unable to manage in the same way physicians cannot keep up with the needed services.

One added hiccup in the picture is that most dementia patients have other diseases or issues - knees, eyes, heart, feet - the parts of our body seem to weaken as we age. Each person has a different picture of what problems they are carrying through life with them. And many caregivers have to deal with their own problems. Caring for two-as-one is a huge, and unintended, burden to lift, especially for aging seniors.

The thing is, as I have traveled this journey, I realized no one has all the answers: no doctor, no society, no medical organization, no scientist. No one yet has dementia sorted out. There are still so many unknowns about the diseases.

Plus, one support solution does not meet the needs of every caregiver. Each situation, big or small, requires its own evaluation and research. ‘What is needed and why’ sometimes become obvious. But other times, creative actions are required to handle behaviors and situations.

Thus, a group of people, who are in similar situations, living in close proximity, with loved ones at comparable points along the dementia spectrum, rises up from necessity. Priceless.

The benefit of just such a small group of caring people is that it provides a social setting, brings people together to help one another on their journeys, and encourages discussions to find solutions to questions being asked every day.

My years of caregiving have turned me into a caregiver advocate of sorts. I see the pitfalls we might stumble through, I know it is a rough road. I don't wish the role and associated hardship on anyone; but when we are in this together, with no choice but to move forward, it is good if we can lean on each other a wee bit.

Thus, as a caregiver and the writer of our caregiving journey, and as a member of a self-created Lifeline Group that meets weekly to this day, I wanted to be sure caregivers could benefit from such a group.

And so, I offer a small starting point to new caregivers.

I propose the Accepting the Gift of Caregiving Support Group. I hope this provides an opportunity for caregivers to find answers. Caregivers just have to take the first steps to reach out for help. 

On the website page www.CaregiverAlzheimerStory.com, click on ‘Discover Support’ tab. Learn more about the AGC Support Group related to Is There Any Ice Cream?, Part One of the Accepting the Gift of Caregiving book series. The Questions for Discovery will be available to those who purchase the book.

On the website there is a sample pdf page to download to show the type questions that would be included.

A self-created support group consisting of local members, or an existing group, will have people who understand the region and know of available resources. Answers to questions, those in the package, or more immediate ones from the members, will come from discussion between members. The resulting answers will be appropriate for the members because they will relate to personal situations.

I know these questions are just a mere beginning of the questions that will come up. But I also know the value of a support group and that Questions for Discovery can be a place to begin. A caregiver in a group has someone to reach out to, someone who can respond to questions. Each caregiver needs a lifeline to help with self-care, a force against depression. I lived that and know. Reach out. Take the first steps.

Do something each day that makes your heart sing.   jas

Original photograph of this post by Lisa Fotios or her site