November is National Family Caregivers Month

On October 30, 2009, President Obama proclaimed November to be National Family Caregivers Month. In his proclamation, President Obama highlighted two programs that should help family caregivers in their quest to balance their personal and professional lives with their care of family or friends; The National Family Caregiver Support Program and the Lifespan Respite Care Act. The National Family Caregivers Month was started by the National Family Caregivers Association to thank, support, and educate family caregivers. I believe that one of goals of all organizations trying to support and educate family caregivers is to help those who see themselves as the niece caring for her aunt with breast cancer or the son caring for his elderly parents identify themselves as caregivers. I believe this is critical because until people identify themselves as family caregivers instead of family members helping those they love most of the legislation and organizational support available will not be requested or sought out.

Swapping roles with your parents

I recently had a discussion with a baby boomer (mid 50’s), like me, who was taking care of her mother who was visiting from a different state. Her mother lives in an assisted living community where she has her own place but people help her with mobile, medical, and personal hygiene issues. After a week of caring for her mother and working , she took some strong medication because she needed a break. She left her mom and went over to a neighbor’s house to take a nap. Her mother was angry and she wanted to leave and fly back home. The friend did not understand why her mother did not understand the burden that was being placed on her. This friend has never had kids. I explained that we are now taking over the parenting role and we must remember how we felt when we were treated as something to just care for as kids. It is difficult to swap roles with our parents in a way that maintains their dignity, yet, keeps them safe and as independent as possible. I would think if you have never been a parent then it would be more difficult. Also, like many of us, she may not have had the best of relationships with her parents at times. But they are our parents, they cared for us the best they could (in most instances). We must do the same for them.

Reliving last year and missing my aunt

You can read all you want about caregiver stress. You can intellectually understand that you have had an episode of depression, gained weight, have increased fatigue, and your body was so depleted you had to have rotator cuff surgery. So what else could impact you from being a primary 24 hour caregiver? With the holidays coming, every night as I try to fall asleep, I think about where I was and what was happening with my aunt. This was close to the week where she had a breakdown and she and I decided it was time for 24 hour care other than us. She had 1 month or so of taking care of herself except for some medical care needed. Then our euphoria led us to let her go to long. She was rushed to emergency on my trip up to WA. She had delusions about what was happening in the hospital. She seemed defeated. It took all of my energy and love for her to bring up the 24 hour care. Her daughter did not agree. Thankfully, the doctor would not let her go without knowing she had trained care. I made sure that my cousin setup for one of those buttons and for 24 hour care. I left for Thanksgiving so the family could salvage whatever there was left of family time. Next week, would be the week I went up and did not leave until it was time to get pictures for the service. I feel haunted by those last months right now. I miss her. I can only imagine what it would be like to be a caregiver for longer than 8 months. I would recommend that anyone who has been a caregiver for any length of time for someone who died to get psychological help. I recommend that anyone who has been a caregiver get support because just the act of caregiving can compromise one’s health. Anyone else out there have similar experiences with thinking back to what you were doing this time while caregiving?

Employee caregiving help benefits

In April, there was an article in Inside Indiana Business that cited a 2006 Metlife Mature Market Institute study showing that US businesses lose between $17.1 to 33.6 billion dollars in productivity due to employees caregiving responsibilities. The purpose of the article was to highlight the proposal of an Indiana based company, My Health Care Manager LLC., that employees and employers become educated on the need for some form of a voluntary caregiving assistance benefit. This would help both the employees as well as employers. Obviously, the employee would pay for the majority but the companies would do the leg work to find and research reputable companies to assist employee caregivers in juggling their work and caregiving responsibilities. With all of the baby boomers turning 60, there is going to be a need for national attention on the services family caregivers provide for our society and to identify what support caregivers need so that taxpayers don’t pick up the tab. There has not been much attention paid to caregivers in this long primary season. For those of us that identify ourselves as “caregivers,” we must start interacting to get a sense of what types of support (government, insurance companies, etc) are needed so that when our caregiving duties are over, we don’t need a caregiver.

Think of yourself as a “caregiver”

One year ago when I arrived at my aunt’s house to care for her, I thought of myself as her niece and friend. I was there to help my aunt as she battled breast cancer. Around the house, she had some books entitled something like, “Rights of caregivers.” She had picked them up during her vigilant, 7 week, attempt at helping the hospital professionals work with her husband after heart surgery. In her words, ” he was not helping the professionals, nor was he helping himself recover.” He died just a few weeks before my aunt found out that her breast cancer had returned. During that time, she got 10 of those books for herself and her children and step children. In reality, she had been her husband’s caregiver for years and years. In all those years, she never verbalized her role as “caregiver.” From my discussions with people caring for family members or friends, most consider themselves someone helping the one they love in a time of need.

To those of us helping our loved one through difficult times, a caregiver is someone you hire to help if don’t have the time or skills to care for your loved one. I remember early on my aunt said, “have you seen or read the caregiver book I got during Bill’s illness?” Why would I need to read such a book, I was her niece helping her because I had the time and I loved her. I was not her caregiver. It really did not hit me until about 6 months in that I realized, but never verbalized, that I was her primary caregiver. I was there 24 hours a day. I slept with a baby monitor so I could her if she got up in the night and needed help. I had to make sure she ate and drank correctly. My cousins became her caregivers, more than her daughters. Not by choice, but by circumstance. It was not until my aunt died that I realized what a toll those 8 months had on me mentally and physically. Maybe if I had read the book on the Caregiver Rights and then looked up information about “caregiving” in general, and more specifically the role and demands placed on a “caregiver,” I may have taken better care of myself.

I believe that until those of us that take care of those we love begin to verbalize our role as “caregiver,” not niece, husband, etc., we will not receive the recognition as a powerful enough group to force legislators, policy makers, and insurance companies to address issues directly related to our needs and the needs of those we care for. More importantly, I have found there is not a group labeled “caregivers.” Instead there are autism caregivers, alzheimers caregivers, aging parents caregivers, spinal chord injury caregivers, and on and on. It is true that each of those categories of caregivers may have different challenges and rewards related to the difficulties that their loved ones face. However, I would guess that there are more similarities in how the specific tasks associated with the caregiving duties impact the mental, physical, and emotional well being of the one caring for their loved one; “the caregiver.” If we split up into factions of caregivers, no one will get enough resources to make a major difference. How many of you have had a difficult time using the term caregiver instead of husband, wife, daughter, friend, niece, etc. Yet, if we could bring ourselves to view ourselves as “caregiver,” we probably would take advantage of the services offered for caregivers and be able to identify and lobby for other services that we need to better care ourselves and our loved ones. What are your views on this topic?

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