I was just recovering from the fatigue and depression that I felt after caring for my aunt as she lost her battle with breast cancer. And now, my cousin (my aunt’s daughter) was just diagnosed with breast cancer (one week after her mother in law was diagnosed with lung cancer and 6 weeks after her husband had major spinal chord surgery). She has 2 children, works, and has been taking care of her husband and his mother. From May 2007 to Dec 2007, she helped care for her mother. Now life has dealt her a big blow. I have volunteered to take her children for 2 weeks while she has more tests before a double mastectomy. This time I have to make sure I take care of myself because soon I will have to take care of my elderly parents. More importantly, I must be mentally and physically healthy enough to be there for my cousin and her family. Hence, I will drive the 14 hours to pick them up when I do not have to cancel any of my previously scheduled appointments. I learned from the first time that if you don’t take care of yourself while you are caregiving, you may end up needing care yourself.

The Connecticut Rep. Joe Courtney has introduced a bill H.R. 6237 that would provide a federal tax credit for Long Term Health Care insurance premiums and a caregiver tax credit under certain circumstances. You can see the rest of the article on Courant.com (June 14). The entire bill can be found on the Library of Congress Thomas. It is in the very early stages of being considered in Congress. People should contact their representatives and let them know how they would feel about such a bill. There is a need for tax credits for Long Term Health Care premiums and relief for family caregivers. What do you think about such a bill?

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.

This is a portion of a good article on long term health care (LTHC) on Forbes.com (May 22,2008) under investments.

Long-term-care insurance may not be right for every situation. It may not be the answer for people who can rely on family members to provide care for them at home, says Michael Haubrich, a fee-only certified financial planner in Racine, Wis.

“Most of my clients have family members who are willing and able to assist in keeping them out of institutional care,” Haubrich explains. “In those cases, the most valuable asset is cash, not insurance. Having that cash will allow the family to be unconstrained by policy limitations that exclude payments to family members and unlicensed service providers.”

The flipside of this argument is that having long-term-care insurance alleviates the pressure on a spouse or family member to be the primary caregiver, says Don R. Campfield, the national sales director of Guardian’s long-term-care division. “This shifts the emotional burden,” he adds.

This is an interesting argument. My parents bought long term health care (LTHC) years ago because they did not want to be a burden. However, when they bought it people were not living as long. I have continually asked them to review the policy but they are convinced that it will meet their needs. Any of you who have looked into such policies know that they are expensive and they do not cover the length of time that many people spend with different illnesses and conditions. In an article in February, Forbes.com discussed some of the options for LTHC. I would love to hear your perspective on what policies and companies seemed best for your purposes.

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?