The US is home to 65.7 million family caregivers [Family Caregiver Alliance: Selected Caregiver Statistics] and yet, one cannot single them out. They look like everyone else: they have no obviously distinguishing features that set them apart from “regular” non-caregiving people. They blend into all sorts of crowds – at work, among friends, at Church or Temple, at the grocery store – seldom revealing any clues about their “other” life.
What exactly is a family caregiver?
A family caregiver is anyone who is responsible for the care of a loved one who is advanced in age, chronically ill or disabled. The caregiver could be a spouse, parent, child, sibling, relative or friend. While people are likely to assume this great responsibility as a “relative” or as a “friend,” they also become “family caregivers.” Acknowledging this additional role is important because many resources that exist to help and to support “family caregivers” may go unnoticed by those who do not see themselves as such. Their work, then, can become overwhelming, which in time can lead to stress, exhaustion or poor health.
Family caregivers become advocates for their loved ones. They are their carees’ voice when they can no longer speak for themselves. Seeing themselves in this light, family caregivers can more confidently discuss treatment options or concerns with medical professionals. There is no doubt about whether it is appropriate to ask questions or to mention observations. It is a family caregiver’s duty to speak up!
What does a family caregiver do?
Everything and anything! But not all at once!
When I stepped into the role of long-distance caregiver, I initially did a lot of researching about:
- my father’s illness (multiple myeloma, renal failure)
- treatments (renal & cancer diets)
- services (transportation, dialysis centers, home delivery of medications & groceries)
- home care services
- support for my mother (she had become Dad’s family caregiver)
- rehab facilities (what they offered, how to pick a good one)
My brother and sister visited Dad in the hospital and rehab facility, helped him with grooming and personal hygiene when he became too weak to walk, and fed him.
Our mother took daily notes about all procedures, painful episodes, medications, treatments, observations and activities. She remained at his side for the last 2 months of his life, keeping him comfortable, voicing concerns when she saw that he was not doing well and insisting on additional monitoring when his condition warranted it. She was a “family caregiver” in its true form without ever hearing the term.
When my husband became disabled, I used what I had learned from Dad’s experience. I did my research once again and found ways to accommodate him so that he remained as self-sufficient as was safely possible. This included finding appropriate furniture, electronic devices, utensils, foods, pill dispensers, mobility aids (canes, crutches, wheelchair and ramp), pillows, etc.
Dealing with paperwork was a new challenge. Drawing a Will, Advanced Directives, Medical and Durable Powers of Attorney, finding the right health insurance plan, filling out forms for COBRA, for Social Security, for his Disability Insurance, and then providing yearly updates consumed quite a bit of time. It was time well spent, however, as we ended up with great coverage and all agencies were very helpful when I asked for guidance. Medicare and Medicare Part D were another challenge that took time to comprehend. I continually requested explanations and clarification (many many times) until I understood what the plans offered, and then selected the one that would cover the services that my husband needed then and in the foreseeable future. I decided from the very beginning that if I was going to perform a “job” that I had never done before, I was going to educate myself by asking those who know about it. This would not only make my job easier, but it would enable me to make informed decisions so that I could provide better care to my husband.
As his illness progressed, I looked for resources that could help him. These included house calls by doctors and phlebotomists who would do blood work at home. I even found out that Texas’ Department of Public Safety will come to your home to take a picture and to issue a Texas ID card in lieu of a driver’s license! I also began organizing my husband’s 25 daily pills in a pillbox, cutting food into bite-sized pieces, picking up medications at the pharmacy and generally trying to keep him as comfortable as possible given his 24/7 pain.
Keeping track of medical records, doctors’ appointments, nurse visits, medical bills, prescription refills and medication approvals required organization and monitoring. Journaling observations on the progression of the illness, the success of the medications and treatments, the emotional wellbeing of my husband, and making note of research findings and new FDA approvals of medications that could be discussed with the doctor serves to document events that may prove useful to the doctors in the future.
Then, there is the non-caregiving side of a family caregiver’s responsibilities. These are tasks that were once done by the loved ones who now need care and can no longer do. They include paying bills, errands, cleaning house, chores, lawn work, home repairs, driving kids or teens to and fro, volunteering, etc. Let’s not forget that about half of all family caregivers in the US are employed. While the tasks increase, the hours in the day become short. This is when family and friends can offer help and when family caregivers need to graciously accept that help. Not only will the result be a grateful caregiver, but the caree will derive the ultimate benefit of having a compassionate and strong caregiver by his/her side longer!
What have I learned from caregiving?
When my beloved father passed away on April 3, 2008, life became clear and simple for me. His passing highlighted the truly important things that we can easily fail to appreciate as we rush through our hectic agendas. Life is about people. Give them love and attention while we are all on this Earth. Like “The Living Years” by Mike and the Mechanics says, “It’s too late when you die… I just wish I could have told him in the living years.” My cousin asked why people wait for funerals to gather. Let’s show the persons who are dear to us that they are dear to us! Actions, indeed, speak louder than words!
In caregiving, spending time with our loved ones is as important as carrying out all the required tasks. Spending time on ourselves – to nurture our own interests, to take good care of our physical and emotional wellbeing, to maintain the lines of communication open among relatives and friends – is imperative if we are to continue “giving freely” without resentment [Wendy Lustbader] and providing compassionate, effective care to our caree.
Caregiving has made me mindful of:
- Appreciation for the love and support that I have received from friends and relatives
- Gratitude for being able to take care of my husband – it just as easily could have been me with CRPS
- Positivity and resilience, which have given me the courage to move forward past seemingly unsurmountable obstacles
- Faith, which has reassured me that solutions await for me even when I cannot yet see them
- The admirable strength of other family caregivers inspires me to continue on my caregiving path as an advocate for my carees, but also for family caregivers. They deserve recognition and support from the community for the work that they do. Who else provides free care 24/7?
In November, we “celebrate” Family Caregiver Awareness. Personally, I celebrate Family Caregivers! It is important to support them by offering to help with tasks, by visiting or calling, by giving them a day off. Family caregivers may not ask for help or may say that they don’t need it. But it benefits everyone, including their loved ones, to keep caregivers healthy, motivated and strong so that they are able to continue on their caregiving journey without needing a caregiver themselves. On any given day, any of us could become a family caregiver or be in need of one. It is up to all of us to support each other.
One of the ways that I have learned about the needs of family caregivers is through volunteering at AGE’s Caregiver Information and Resources Center for the past year. I have taken many requests for help and resources, and seen first-hand how the services they provide help family caregivers and seniors. I have also attended their Caregiver’s Circle support group, where caregivers share their days and lean on each other for encouragement.
AGE provides family caregivers with support on many levels:
* Adult Day Health Center – where seniors can socialize and spend the day in a safe and stimulating environment while they give their caregivers a break
* Early Memory Loss Program – activities for seniors & their caregivers
* H.E.L.P. – Health Equipment Lending Program lends free health equipment for as long as necessary
* Computer Lab – computer classes for seniors by seniors
* Caregiver’s Circle – support group for family caregivers
* CaregiverU – free evidence-based workshops for family caregivers
From one family caregiver to another, I encourage you to use the caregiving resources that are available to help you and to take care of yourself as diligently as you care for your loved ones.