The last few months have been some of the most difficult of my life, as my mother was diagnosed with cancer, suffered through treatment unsuccessfully, and quickly worsened, leading to her untimely passing just over two months after her taking ill. As a self-employed only child who lives about two hours from my family, it is clearly a time of a full range of logistics and emotions. One decision my father made as her condition worsened was to hire a private aide to be at my mother's bedside for two shifts a day (as she went from hospital to nursing home to hospital to hospice in a matter of three weeks).
When you think about hiring a private duty aide, you usually think about in home health care for elders. Situations in which an elderly loved one due to declining health or a serious illness needs help of varying degree to handle day-to-day activities. The level of care can range from personal care to health care. It is a hurdle that many have to face as they, their spouses, or their parents age. Family caregivers can only do so much until the stress level starts to affect the caregiver to their own detriment. A prime example is shared in this Kaiser Health News article on spouses as caregivers as a spouse slowly but surely becomes unable to manage the all-consuming role of sole caregiver. Hueina Su has an excellent book, Intensive Care for the Nurturer's Soul" on this very topic of self-care for the caregiver.
In our situation, while there was certainly skilled medical care in the hospital, most nurses are so overstretched that it is humanly impossible for them to spend enough time with patients who are unable to respond and communicate to truly ensure they are OK. At least that was my perspective seeing nurses on the oncology floor juggling 10-12 patients each. Many whom, like my mother, were unable to even "push the red button if you need something." Where does that leave the patient's level of care and comfort? What is the family to do? Clearly families need to take time away from the hospital environment, yet they feel immensely conflicted about leaving their loved one alone. I sure know we felt that way.
So we hired an aide through a private company to literally sit in the room with her from 3 p.m. through 6 a.m. (the times when less is "happening" on the hospital floor and the patient is alone for greater periods of time). The process of choosing an agency would be confusing and complicated under normal conditions, but when you are upset, exhausted, and facing the death of a loved one, well, it's like a big puzzle and you have no opposing thumbs. Basically, when you inquire about it, the hospital hands you a spreadsheet in tiny font with long lists of "outside services" from transportation to care assistance to funeral directors. Fortunately for us, we had the support of a local colleague of my father who was experienced with health care and could get us recommendations. We had my aunt, who is an RN, spend several hours to research, call, and screen agencies for us. Their experience was able to guide us to decisions that otherwise might trip us up. For example: the importance of hiring an aide -- and not a nurse -- because otherwise confusion and conflict can occur in the hospital setting regarding chain of command and whose nurse is "in charge."
It's not that we felt that the nurses were not doing their job. We had some wonderful, caring nurses throughout our journey. Yet, the systems, paperwork, and inadequate staffing in so many hospitals makes doing their REAL job (that of caring for patient) an uphill battle at best.
A three-part series on Home Health Aides in the New York Times Blogs a few years ago has some very sound advice that continues to apply based on my recent experience. It covers:
- Home Health Aides: Why Hire from an Agency?
- Home Health Aides: What They Make, What They Cost
- Home Health Aides: Present and Future
While the cost data is a few years out of date, the fundamentals still apply. In our situation, the research of the agencies was key. In the end, the agency we chose was excellent. They had highly trained aides (while they worked in the role of an aide, many were experienced RNs, EMTs, and LPNs), which meant that while they did not encroach on the nurse's duties, they were trained to observe and were able to be proactive in their interactions with the nurse. They could also interpret things for us and make suggestions for us to consider asking about. Flexibility was high -- on many occasions my mother would be transferred just as an aide was to come on duty. The agency and aides literally adjusted on the fly numerous times with just a phone call. Communication from the agency and with the aides was consistent and clear. I still wake up at 5:30 a.m. waiting for a cell phone to ring with an update on her condition, even though that ended several weeks ago. In addition, because we went through a reputable agency, we didn't need to worry about whether or not the person could be trusted or would actually show up.
It was a significant investment made fully out-of-pocket. Make no mistake about it. The approximately three-week scenario cost in the nature of $5,000 according to what was shared with me. While some insurances cover health aides in certain scenarios, this was not one of them (remember we are not talking in-home care, but augmenting care within a skilled facility). Yet in the end, I would like to think it gave my mother a level of comfort and support knowing that someone was nearby should she need anything, even if it was just to have someone use a tissue to wipe her face or give her a sip of water. I know it gave my father and me a level of comfort and freedom to do all the things that needed to be done and care for ourselves the best we could in a way that would not have been possible without them.
It makes me sad to watch and wonder why the business of health care trumps patient care on a macro level. It is certainly yet another area of health care that needs reforming.
Have you ever hired a health care aide? What was your experience? Would love to hear your stories and lessons learned in the comments ...
Paula Gregorowicz, owner of The Paula G. Company, offers life and career coaching for women to help you boost your confidence and break through your limitations so you can re-ignite freedom and a sense of adventure in your life. Learn more about The Life Alchemy Success Formula™ and Get the free eCourse "5 Steps to Move from Fear to Freedom & Experience Greater Confidence" at her website.
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