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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,
