In June of 2014, as we laid our mother to rest, I officially retired my role as caregiver daughter. My mother Mildred passed away in her 92nd year, one day short of the one year “anniversary” of a fall which resulted in a broken hip and a downward spiral.
I am the daughter who lived 600 miles away from the family in Canada. I was the long distance caregiver who spent ten years overseeing first the care of a father and then the care of a mother. It was the most exhausting role I have ever assumed but also the most worthwhile. In that ten year odyssey I found many challenges but also many coping strategies that kept me going and gave quality to a loved one’s last years.
The single most important approach to caregiving for me was that of becoming an educated advocate. When you have the knowledge you can ask the right questions, contact the appropriate resources, and stand up for your rights and the rights of your loved one. People will listen and really hear you when you have the knowledge and combine that with being open to learning more.
When my mother’s care became inconsistent after her fall, it became necessary to take time from my job and home life to be by her side while in rehab. Equipped with an iPad and time, I spent two weeks observing, recording notes and educating myself. Unfortunately, it was a situation of my mother’s care being substandard and it became obvious that we needed to make changes. I knew I couldn’t get my mother to the state of health she had been in before the fall; too much had transpired.
I knew I had to at least remove her from the facility where she was and find a better alternative. I used the internet and professionals to identify other options to improve her situation, even if only temporarily. This plan bought us time to carefully research options and make thoughtful decisions. It also brought her back “home” to the retirement village where she had been living independently before the fall. This was where she was surrounded by staff and fellow residents who cared about her welfare. Since Mildred’s situation was considered critical, she was guaranteed long term care placement within thirty days. Her needs were too great to continue living on her own and the retirement home was not equipped to provide 24/7 care.
What happened over the next two months was painstaking. I returned to Massachusetts and continued conducting my advocacy with the help of siblings in Canada and eventually every health professional I identified as an ally.
What struck me so profoundly was that my mother had an advocate in me but there were many that did not. Could my voice help make changes for those I did not even know? Those who were sure to follow in my mother’s path?
I gathered my pages of notes, which were detailed with names, dates, incidences, concerns, etc., and created what became a seven page document. I identified those in power within the network of the hospital/rehab involved and emailed my concerns to them. Within a month I had an opportunity to return to Canada and participate in a meeting with a committee of five people, one of whom was the Chief of Staff. They had read my document. They wanted my input. They heard me and they believed me. The Chief of Staff at one point looked me in the eye and said, “We have failed your mother and your family on every level, haven’t we?” It was empowering to say the least.
Nine months later, after my mother passed, I notified the Chief of Staff and Director of Nursing, imploring them to continue their work towards improved services within their facilities. I received follow-up personal emails from both. The Chief of Staff promised me that they were continuously working towards improvements in caring for all patients. He assured me that Mildred was a patient who had made a difference and was not forgotten. I knew I had accomplished what I had set out to do.
If you have never been in this role, it can be overwhelming. You feel solely responsible and guilty if you don’t make what you want to be the “right” decisions. However, when you make decisions on someone’s behalf and you do it in the best interests of the person and you do it armed with all the information you can gather, then there is no “wrong” choice.
You can start being an advocate in very simple ways. Keep a recording of the people you speak with, the appointments you are part of, the medicines that are prescribed, changes in health or behaviors and any other detail that you may need to refer to. When someone offers you advice or information, accept it and incorporate it into your arsenal of knowledge. You do not need to be a medical professional to arm yourself with accurate information.
The energy you will spend on advocating will feed off of itself. You will find a purpose and it will propel you forward. You are engaged in this care and that is what will make the job worthwhile. It isn’t just the person you are caring for, but your voice can help make changes for others; those who have no one to advocate for them.
If you need help in advocating for a loved one in a long term care facility, NSES’ Ombudsman program is a good place to start. The program provides a means for people to voice their problems and concerns and have their complaints addressed. We are also excited to introduce “Practical Matters”, a new private pay service which will assist with medical advocacy among other services. Check our website at https://nselder.org/practical-matters/
Long distance caregiving presents many challenges. I was fortunate to have flexibility in a job which allowed me to travel frequently back and forth. I made sure those people responsible in any way for my mother’s care knew my by name and I would call them as often as possible to check in. I needed those around my mother to know that she had people watching over her and keeping on top of things. I became familiar with all who were part of my mother’s care team. My goal was to have those people know that I appreciated their work. I wanted people in her long term care home to be happy to see me and to feel I was working with them. What came from those efforts was a team of people who got to know my mother and provided her with the best care possible during her final months.
At the end of the day, when you can say you have done all that was in your power, you will feel it was all worthwhile. The “fight” is never in vain. You will feel blessed that you were able to be present as an advocate.