My mother-in-law has now lived in our home for three months. There have been many ups, and of course, downs. Routine is very important, as is the need to prepare for the unexpected. My observation skills are put to good use as is my ability to make sound decisions. This is especially important when you are the primary caregiver for a vulnerable person. I also cannot stress enough, not to allow yourself to become lazy with your intent and strength. This not only includes what happens in your private residence but, when the person you care for lives in a facility, be it private or publicly funded and staffed.
When Mere arrived in our home, we had in place things that would simplify the transition and make the care she received, easier to perform. My health, emotional and physical, comes above all else. If something happens to me, I am unable to pursue other things I enjoy and value. The occupational therapist was very helpful in procuring all the necessary equipment. We use things like a return, that allows Mere to help us, help her, go from sitting to standing to the bed. It saves my back! The wheelchair is outfitted to her specific needs, which is critical as she has yet to recover the right side of her body. We are realists. We understand this may never happen. They also offered advice as to other equipment and supplies we may find beneficial. While the thought is appreciated, I felt there was an important step the medical staff and those in positions of power failed to grasp.
Without a doubt, it was the best decision to move Mere into our home. When she first had her stroke at the start of the COVID pandemic, the care she required was beyond my capacity. There were treatments, medications and professional opinions I have not learned about in enough capacity to be effective. The type of stroke she experienced is best described as an explosion. Many are familiar with blockages and clots. That is the first assumption, people say out loud when we begin to say that Mere had a stroke. These assumptions are dangerous and even plague the medical world.
During the first few months of Mere's hospitalisation, she was catatonic. There was brain activity but, limited. There was very little sensation in her extremities but, she was breathing on her own power. Eventually, she recovered enough activity to be transferred to a hospital closer to home because she no longer required the emergency 24 hour care. Unfortunately, she was not verbal enough to clearly state her needs. Once again, assumptions were made.
There was visible, weekly progress. Each time we visited, Mere was able to say a few more words and make more concrete connections between objects and names. What I have found most amusing is her choice of language. For some reason, English has come more easiliy than her French, mother tongue. Unfortunately, this has created some issues amongst the caregivers who do not understand English nor, take the time to listen. At this point, Mere is not forming coherent sentences. Sometimes there are a series of words but, not necessariliy ones that can form an understandable sentence. Other times, it may only be sounds. In a fast, understaffed environment, no one takes the time to stop, and actually listen. There are assumptions being made that are hardly ever accurate because it is simpler to form their own opinion.
The faults within the medical communtiy are numerous even if based on good intentions. From my own perspective, I have been quite frustrated at the lack of attention and put simply, good manners. I also have this fault of rushing a sentence but, I was taught to listen to the other person. Understand their meaning, then form a response. The key, and this is critical, is to actually listen to understand, not respond. My first encounter was the social worker in charge of Mere's case, requesting a special pair of shoes to aid in her transfers during physiotherapy. No problem, I replied. I will order them. As soon as they arrive, I will deliver them to the hospital. A week later, the shoes arrive. Unfortunately, I did not receive notice until after the post office closed Friday evening. In our small town, the post office remains closed through the week end and does not re-open until Monday morning. That evening, I telephoned the hospital, spoke with social worker and explained the situation. I would deliver the shoes Monday afternoon before I left for work. I had not even finished speaking when I was interupted to be told that I should pick up the shoes that evening and deliver them to the physio staff. All right. You want me to commit a break and enter? She did not understand. I repeated word for word, exactly what I said the first time. I wish I could tell you this was a horrible joke, but once again, I was asked to bring the shoes that evening. This experience lead me to believe that if the staff refuse to listen to someone who is able to speak clearly and concisely, how are the able to listen to clients who do not possess the ability to express themselves to be easily understood?
This inability to listen impacts other areas of the client care. I became aware of a serious ramification within the prescribed medication and treatments. Mere is unable to properly explain her needs. She, understandably, becomes frustrated which in turn, becomes sounds with the absence of words. These sounds are then misinterpreted as expressions of pain. Unable to take the time to listen and properly observe, the staff providing care, assume Mere requires drugs to alleviate pain. The strength of these drugs left her in a zombie-like state, further limiting her ability to speak. Now that Mere has been rendered further unable to communicate, more assumptions are being made daily. Now there are prescriptions of morphine, Fentanyl, cortizone injections and Tylenol. Had Mere's power of attorney, primary caregiver been made aware of all the different medications and treatments, those people being us, more questions would have presented and a demand for answers been submitted. I have my doubts we would have been properly informed given my previous encounters.
Now we are facing an uphill battle of reducing the pain medications. Cortizone injections have been stopped. The Fentanyl patch will cease by the end of the week. We finally have a doctor that not only made a housecall, but listened to our concerns to initiate the reduction of various medications. It actually gives us hope that there are medical professionals who listen.
Hospitals, long term care facilities, private senior's homes, are all understaffed and improperly funded. The people being hired are either overwhelmed, not properly trained, under payed, and poorly supervised. I have had the unique pleasure of working for people who actually listen and pay attention to the needs of their clients and their employees. I wish this was common practice. I have also worked for people who have had no business being in a supervisory position creating distrust and unsafe working conditions by promoting the need to carry out tasks and swiftly in order to move on to the next task. This creates a giant hole for our vulnerable people to become trapped inside because the very simple need to actually listen, takes time. No one seems to have grasped that importance.
