It Isn’t Easy Being a Caregiver
After recently losing my mother to breast cancer, I have spent many hours thinking about her, and all of the wonderful blessings that were in both of our lives. But I must also admit that there were many days when I found myself overwhelmed with the amount of information that needed to be absorbed, with the level of physical care that I needed to provide day after day, and with the varying emotions that accompanied my role as caregiver.
Even after working with my brother in the home care business for the past two and a half years, I encountered brand new issues every day, and needed to make decisions that had a major impact on her quality of life. Oftentimes, I felt like a detective, trying to uncover the secrets of Medicare, or searching for the lowest prices for drugs and supplies. I learned so much during the past few months that I feel compelled to share some tidbits and help guide others through the vast amount of information that is out there.
The first thing I recommend is to identify all of the resources that are available. Mom lived in Johnson County, which offers wonderful services through the Johnson County Area Agency on Aging: http://hsa.jocogov.org/aging/aging.shtml or 913-715-8800. Kansas City, Missouri’s counterpart can be reached at http://www.marc.org/aging/contact.htm or 816-474-4240.
I have also become acquainted, through our home care business, with the Veteran’s Aid and Assistance Program. As the widow of a veteran who served during the Korean War (or any war), she might have been eligible for around $1000 per month to cover part of the cost of caregiving. It’s a very complicated process, but you can check it out at www.va.gov or by calling 1-800-827-1000 to see if you or your loved one might be eligible.
Since she was of Medicare age, I wish I had gone immediately to www.medicare.gov (then, clicked on “Medicare and You Handbook”) or called 1-800-633-4227 to learn about the vast list of benefits. We often paid out-of-pocket for supplies and equipment and some services that would have been mostly or fully covered. We also learned late in the game that she could have gone to a facility for 5 days of care, allowing her caregivers to have some respite. I urge you to take care of yourself, and find relief on a regular basis either through volunteers or through an agency with professional caregivers. Many churches and synagogues have volunteers who are happy to help with transportation, companionship, and/or homemaking.
Fortunately, I was well acquainted with an Occupational Therapist and Aging in Place Specialist who was able to help us make sure Mom’s home was safe, and that she had all of the appropriate grab bars, lighting, bathing accessories, bed, and chair. We also chose to take advantage of nutritional guidance, suggested by her physician. I prepared baggies of high calorie, high protein snacks that were always within her reach. Good nutrition is essential for a variety of reasons, and doesn’t have to require extensive preparation.
My family was able to manage all of her transportation needs, but there are several organizations in our area that provide transportation for a nominal charge. It’s also time to be sure your loved one has expressed his or her end-of-life preferences. Although it is a sensitive topic, you can utilize a wonderful workbook, “Caring Conversations,” to assist you. You can find it at www.PracticalBioethics.org or 816-221-1100. If you aren’t able to maneuver through all of these things on your own, a social worker at your hospital or a private case manager can guide you.
As my mother’s main caregiver, I experienced a variety of emotions, ranging from anger to guilt to sadness to joy. I soon became very aware of how common these feelings were, and sought advice and support from others. I’d like to share an email that came from a dear friend who had previously gone through a similar journey:
It is never easy to be a caregiver. Your life is upside down. You have no time to yourself. And again, the day ends and the next day begins the same, with you in the caregiver role. The reality, though, is that at a point unknown, your role will end, and no matter how much you want to retrieve those times, they are gone. So from one caregiver of the past to another of the present, take each day and try to laugh a little with your mom and try to talk a little with your mom. Go home and take a bath and just soak it in that one more day has passed. And finally, when the end does come, you will feel at peace with all you have done.
If you would like more information about anything you read here, please feel free to call me at the Enhanced HomeCare office: 913-327-0000 or email me: cindy@enhancedhc.com.
