November is Family Caregivers Month
CAREGIVER. Does this term describe you? As a registered nurse, I chose caregiving as my profession. But my understanding of the role of a caregiver changed a number of years ago after experiencing a new perspective on the concept.
While traveling home from a family vacation, the phone call came. My 90-plus year old grandmother (the only grandparent I had left), was in the hospital after suffering a stroke. Immediately, medical training kicked in and the questions poured out. When did it happen? What are her symptoms? What hospital is she in? So, the planning started. The step after hospitalization was clear enough – a rehabilitation facility. But after that????
My grandmother had been living for a number of years in an assisted living facility. She used a walker due to severe arthritis, but was still able to take care of her own physical needs, and had all of her mental faculties. Suddenly, the situation had changed, and whether it was temporary or permanent, we weren’t sure. Her right side was affected and she was right-handed, which added to the challenge. But she wasn’t completely paralyzed on that side and her mind was clear, and for that we were grateful.
The rehabilitation stay helped her begin to learn to live with new limitations, but was nowhere near long enough for her to regain enough strength and function to return to assisted living. The answer that was clear to me, and the direction she thought she should go, didn’t match. I have a great admiration for the selflessness she demonstrated by suggesting that she should go to a nursing home. “I don’t want to be a burden on anyone,” she said. Knowing that my grandmother did not have a demanding personality strengthened my resolve to bring her home. This was going to be a piece of cake. Certainly she would be easier to care for than many of the patients I had dealt with, I had professional training and experience to provide the physical care, my house had a first floor bedroom and bath, and we already had most of the equipment we would need (stored in the basement from my other grandparents who had multiple needs prior to their passing). I would have to leave my job, but my grandmother had the means to assist us financially (see a future article this month for more on this subject). Having 7 and 9 year old daughters to care for also didn’t deter me in the least, and my husband was supportive, even though that first floor bedroom was his man cave. My grandmother required convincing from multiple family members, as well as from the staff of the rehabilitation facility, but I won and she joined our household. And I proceeded to learn very quickly that caring for strangers and going home at the end of the day is one thing, while providing 24 hour care for a loved one is very different.
Caregiving is a concept that has many variables. Caregivers can be younger or older people, medically trained professionals, or anyone off the street. The recipients of care can have a simple single need, or can require complex technical skills on multiple levels. The time commitment can be short term or long term, intermittent or 24/7. Regardless of the details, family caregivers are an often overlooked and underappreciated segment of the population. It is easy for caregivers’ needs to be hidden in the shadows because of the obvious requirements of the care recipient. According to the Caregiver Action Network, 2 out of every 5 adults in this country (both men and women) are family caregivers, providing $450 billion worth of unpaid care each year. This amount is more than the government pays for Medicaid, and twice as much as professional home care and nursing facility care combined. Clearly, family caregivers are essential to the health and well-being not only of the loved ones they help, but also of our nation.
This month, as we celebrate Family Caregivers Month, our focus should turn to the struggles that these individuals face as they seek to meet the needs of others. Do you know a caregiver who might need a word of encouragement? Are you the recipient of care provided by a friend or family member, and want to express your appreciation for the assistance that you receive? Call me (717-697-3223) or send me an email (Karen@keystoneelderlaw.com) with one sentence about or a brief description of your caregiver, and I will publish a column of personal messages. If you are able to celebrate your caregiver in a more tangible way, here are just a few examples of demonstrating your support: providing a home cooked meal, a couple of hours of free time, or assistance with a few routine tasks (such as yard work or errands). Next week I’ll address some tips directly for caregivers to help reduce the stress of performing one tough job.
What happened to my grandmother? I dare say that I did have it easier than many other caregivers out there. My mother (her daughter) was nearby to provide additional support, my grandmother was mostly agreeable, and our situation was only temporary. I struggled daily with the role reversal of being the caregiver for one who had cared for me, with respecting her privacy (as much as you can with someone who can’t bathe, toilet, or dress themselves), and figuring out how hard to push the tasks and exercises she needed to do in order to reach her goal of returning to the assisted living facility. She did move back after less than a year. Although she never said it, I believe it was just as difficult for her to accept the care as it was for my family and me to provide it. Is caregiving the best choice for every family? Definitely not. But we can all recognize the oft times quiet, but necessary, role that family caregivers play.
Karen Kaslow, RN, BSN
Elder Care Coordinator
Keystone Elder Law