Knowing THEN what we know NOW

Time travel. It is the concept of some of the most interesting science fiction books I have read and movies I have seen.

When I think about my role as a caregiver, I sometimes wish that I had the ability to bend the cosmos to my will and go back in time.

Not too far back, mind you. I’m African American and female and let’s face it, history has not always been kind and supportive to women nor women of color

No, I’m talking traveling just far enough back so that I could better educate myself to what was waiting for me once I became a family caregiver.

I would want a time machine that takes me back about 22-years. In 1999 I was one year away from moving my mother from her home in Northern California to live closer to me in South Florida effectively beginning my caregiving journey.

At that point Miss Nellie was in her 70’s and I knew NOTHING of what it meant to care for an elder. I had a vague sense of knowing mom would need help and guidance finding medical insurance, signing up for senior activities and transportation to go grocery shopping.

Miss Nellie & Julia; Jamaican vacation

I did my best to offer my mother as many unique experiences as possible and succeeded in that effort. But there is so much more to caregiving than that.

There was nobody who pulled me aside, sat me down and said, “Look, Julia, these are some of the things that happen as people age so you are going to need to plan for a, b, c and even the unknown!”

I had one friend who nudged me to at least think about what mom’s advancing years might mean but he did not have a guidebook either.

Time travel. Oh, to roll the years back so someone could have that conversation with me.

However since that is not possible I have decided the next best thing I can do is focus my energies on trying to prepare others. Look to the future. Pay it forward.

Part of that is this Keeping it REAL Caregiving Newsletter. Be sure to SUBSCRIBE so you don’t miss any part of the journey.

Is there any ONE thing you wish you had done or known about BEFORE moving into the role of family caregiver?

I recently put that question to members of the Keeping it REAL Caregiving as well as several other Facebook groups. Who better to ask than those who are, or who have already lived the role of caregiver?

The answers came in quickly and from the heart. Responses were varied and ranged from practical matters, including insurance and medical needs to realizing that once you are a full-time caregiver, many aspects of your own life may be put on hold.

Incidentally, for privacy the names of those who responded are not included here.

What you need to know

“Traveled more.”

“Got married.”

“I should have explored long-term care insurance for my mom.”

Another respondent who works in the Long Term Care field added this:

“It’s amazing how much families don’t know about Medicaid and private insurance and how the matriarch/patriarch assets really do determine how much help is available.”

One woman who cared for her mother for many years advised how important it is to understand the reach as well as the limitations of a Power of Attorney.

“I would have had my name put on her accounts. PoA no longer exists after death. The legal system makes death harder and it’s already pretty hard.”

To that point another caregiver shared this regarding navigating legal matters after losing a loved one.

“I never had PoA over my aunt and it made everything more difficult. Even when she passed, I had to get letters faxed to me by my father and two uncles (her next-of-kin), to have her body moved from the hospital to the funeral home. Having responsibility without authority is counterproductive.”

Money matters

Several people mentioned education, money and finances; for themselves as well as their elders.

“Finished paying off my bills. I was working toward that financial goal but that goal was not inclusive and with the pandemic occurring as it did I was not prepared to add caring for my parents into my financial goals. This happened unexpectedly and I had to make the best of a challenging situation.”

“Finished schooling so at least I could have a degree to fall back on.”

Planning ahead

Others replied with heartfelt experiences which drive home the point of why it is so important to think about aging and family caregiving before you reach a crisis situation.

For instance, a male who cared for his mother shared this:

“It happened so suddenly, there was no time for planning or preparing. For us, it was 24-hour care around the clock with my mother. We had to do “grown up” stuff and it forced me to step up to that plate. I’m also grateful I was in a position to be able to help her. It made me a better man.”

Another woman who cared for her spouse shared that getting a diagnosis EARLY from doctors, helped she and her husband prepare for the realities of what dementia would mean for them. She said it allowed her husband to play a role in planning for his own care.

Family matters

For others, the question evoked memories and emotions of how they had to learn to work with siblings to provide care for aging parents. That is not always easy, as I explore in the KIRC blog, Vanishing Sibling Syndrome.

“My brother moved in with my parents, allegedly to take care of them. I wish I had done it instead. I took care of the legal aspects and was their medical surrogate. But he didn’t do the things I would’ve done. Like cook good meals for them, even though I gave him simple recipes. Or sit and talk with them routinely. I’ll probably always have guilt about it.”

Heart and soul

Other responses fell more into the emotional category; intangible items one would perhaps have no way of knowing in advance of becoming a caregiver.

“Great question. I was always anxious to give my mom what she needed, that I forgot to just pull up a chair and listen to her. Sometimes they just want to talk. They’re new to this situation, too.”

Just imagine

This is just a small sampling of the literally millions of Americans who are family caregivers. I believe this shows just how much we can learn from each other and we should.

If nothing else, after reading this, promise me you will begin thinking about what the future will look like if you or someone in your family moves into the role of caregiver. Use the input from these individuals as a starter guide.

I’ll leave you with these two nuggets.

• Feel free to check out a recent webinar I presented reviewing some of the items I believe are key to preparing.

On a personal note, I wish I had allowed myself to understand I could not be superwoman and that sometimes, I should have just been a daughter and friend – NOT – a caregiver.

There is not a day goes by that I don’t miss my mother and wish I could replay some of those moments and be more aware of the person and woman in front of me – not just my aging and frail mother.

• And, consider this final thought from a current family caregiver – it’s something for all of us to think about as we age.

“As a care provider I can be respectful of my children by making a will and preparing for life pre-retirement. I want to do a better job planning for the future. There is still time but the earlier you can plan, the better for everyone.”

Well said…

Do you have any guidance and/or advice to pass along to others? What would you tell yourself ten years ago that would make a difference in your caregiving life now? Would love to hear from you – shoot me an email: [email protected]. I suspect there is plenty more information to share!

Ciao~