Shout Out To The Caregivers During the Pandemic
There’s nothing like a pandemic to shine a bright spotlight on the challenges a caregiver faces. Any interventions or assistance one might have had in place before the quarantine and subsequent shut down probably evaporated and made the term “24/7” a living reality. I don’t know who needs to hear this…maybe just me…but I want to tell all of you caregivers that I feel your pain. And if I had any energy left in my own high risk body, I’d give you a high five.
After 2 ½ years providing all of the day-to-day care for my dad, I decided to get some outside help. We had tried an assisted living facility for a few months until the unaffordable costs drove him back home. It was then that I realized I needed to bring in some help, if only to get out of the house and focus on my own work for a few hours a week. As a writer, one would think I could just write at home…easy-peasy. But not so much. Between meals, the extra chores and simply managing Dad’s life, I can barely write an email anymore. So, in late January, we called a local home health aide agency and began the process of finding just the right person to stay with dad.
We found her in early March. And a week later, the world closed down.
Those for whom we are caring are by definition in the highest of high risk groups, while many of us caregivers are in the high risk category ourselves. With an abundance of caution, we limited anyone who came into our home, including my daughter and her family and my son. My dad is 89, legally blind, a diabetic, with a pacemaker, high blood pressure and on the dementia spectrum. (Let’s be honest; we’re ALL on the dementia spectrum, right?) I am 62, overweight with high blood pressure. My husband is 71 and has high blood pressure. We are all high risk, but it’s my husband who ventures out into the pandemic world for supplies and food — at least those I can’t order on Amazon.
For months it’s been just us three. In my growing discontent, I joined a Facebook group for dementia caregivers that a friend recommended. I was wary, because another friend had cautioned against such groups: they could be bastions of negativity and complaining. But after the endless days of constant care, I needed to know I wasn’t alone.
It was eye-opening, this group. In the interest of privacy, I’m not going to name the group, but there are dozens, if not hundreds, on Facebook — if you need one. The group is a blessing and a curse. So many families have it worse than I do right now. Much worse. Some have children living at home at the same time they are caring for aging, difficult parents. I read one woman’s post recounting an unbelievable story of caring for a grandmother and then her own mother only to find out that she is a mere 30 years old! That’s the blessing part — knowing things could be a lot harder to deal with. The curse is the hopelessness and despair echoed by nearly all the members. This “job” of taking in a loved one and caring for them — in my opinion — cannot be adequately prepared for, no matter how many books you read or friends you talk to.
I have come to believe that it is NOT reasonable to expect family members to take on the Herculean task of caring for a loved one, no matter how cheerful and friendly they may be. There are so many damaging and unreasonable issues to deal with when we take over the care of a parent or loved one that have been normalized by our society, beginning with the guilt. How many of you have felt guilty that you don’t want to do this anymore? Be honest…raise your hands. If we complain then we are ungrateful children. We should be grateful, not resentful that we can care for our parents the way they did for us. It’s our turn now, except it really isn’t. There is nothing similar in raising children and caring for a parent who might not even know you. There is no hopeful end to the task; children grow up, seek their fortunes, come home for holidays, bless us with grandchildren. With an aging parent already in decline — because why else would they need care? — there is only illness, more decline and death to look forward to. I’m not being depressing — think about it. They’re not going to get better.
Eldercare in our country is a failure of our society, our culture. Why is it so expensive to find care for our elderly? Unless you have an orchard of money trees in your backyard, the only option open to many families in our country is to change your entire way of life in order to care for a person who isn’t even able to recognize what’s going on. And if they do recognize it, like my dad, they are resentful of the years of planning and work they put in to provide for their “golden years” only to find out their long-term care insurance was canceled. Or they don’t really have enough money for an assisted living facility or even bring in adequate help in the home.
And then there’s that evil Medicare look back or “claw back” as I’ve heard it referred to. Many people don’t even find out about it until too late. Aging issues that require immediate caregiving can come up suddenly. People who have worked their whole lives to provide for either their long term care, their family’s legacy or both can face losing everything — and have. There’s help in hiring an elder care attorney, but that’s even more money to spend when there’s often very little available.
Whew. It’s a lot. Sometimes, too much.
So, here’s to you caregivers. You sisters, daughters, sons and husbands. Siblings and spouses and cousins and steps and in-laws. You’re doing a job that was never going to be fair or rewarding but are expected to see it that way — and amazingly you have. And sometimes it’s okay that you don’t. There are no Hallmark sentiments for giving up your life…and maybe the lives of your families…in order to devote your life to the care of another. There are nights I go to bed in tears, swearing I can’t do one more day, and then the next day, I do.
There is no public recognition for doing this. There really aren’t any rewards. But I have found that I apparently have a reservoir of strength and love inside me. As frustrated as I can get some days — and there have been some doozies during the last three years — I am still able to make sure dad has warm soup for lunch, his sheets are clean and he has his special snacks before dinner. There’s no such reward as getting a better room in Heaven, winning the lottery or keeping the bills from coming in. But there is a reward in knowing your own strength. And your heart. ❤