I would like to begin this article by saying I appreciate those that work within the healthcare field; within it’s many branches within hospitals and private homes etc. Many are doing their best with the skills they have. Unfortunately, many are working and struggling to care for patients whose medical needs are beyond their skills. Too many, caregivers are being sent to tend to patients that they do not have the proper training to care for safely. I do not blame the caregivers trying to earn a living with the skills they have. However, I do believe those that are responsible for placing qualified medical staff in the homes of patients should be held accountable. This has become a horrific problem within Ontario’s healthcare system. Many of these in-home care patients are elderly citizens desperately needing medical care to help them cope with their daily lives living with their illnesses. With the Covid-19 pandemic it has certainly made things in day to day life more challenging, including healthcare. It still does not excuse those that are placed in a position of trust and authority to make sure patients receiving homecare are getting the level of help they need.
Poor Health Making Travel Difficult
My own father was one of these elderly people that was not getting the proper care he was in need of. My father passed away on April 23rd 2021, just shy of his 85th birthday on May 1st 2021. My parents reside in Kitchener, Ontario, and I live in Miller Lake Ontario on the Bruce Peninsula. My husband and myself both suffer from health conditions, making long travel difficult. I have epilepsy and take tonic-clonic or grandmal seizures. I am unable to drive, so depend on my husband to take me everywhere and anywhere I need to go. I live about 3 hours away from my parents, so we did not get to see them often. I talked mainly to my mother on a practically daily basis.
Stage 1 Bedsore
As my father’s health declined my mother would say he was eating less and less and was getting up less and less. I remember about 2 months before my dad passed my mum had mentioned he was complaining about a sore backside. My mum had a look and seen a red spot. I had mentioned to my dad that his doctor needs to have a look at it and she could perhaps provide prescribed cream to help tend to this discomfort. This discomfort ended up being not just a red sore spot, but the beginning or stage 1 of a bedsore. By 2 months later had developed into a stage 4 bedsore.
Fast Decline in Health
It was Wednesday the 21st of April when I laid eyes on the awful bedsore. I had arrived on the Monday evening (19th of April). I had visited my parents about a month and half previously, and my father was looking frail then. At that point he was still able to get up and move around sit up in his chair in the living room. He was frail but was still functioning quite well. Considering the doctors had given him 5 months to live 3 years ago! My father was a tough and stubborn Scotsman; he had battled against liver, lung, skin, and bowel cancer. It was shocking when I walked into his bedroom to see how much my dad had declined in just that short amount of time! My family members did not tell my dad that I was coming. His eyes lit up when I walked into his room and he saw me standing at his bedside.
He Knew Who I Was
I was wearing a face mask, but my dad still knew who I was. He said “Pam my daughter” with tears starting to run from his eyes. I removed my mask and responded with tear-filled eyes “I am your favourite daughter!” I sat down beside him and we clutched each others hands. I am actually his only daughter, but this was a running family joke of mine that I used on my dad as well as my brothers! Staring at my father his head reminded me of a new-born baby bird’s skull. It was like a shrunken head, with a thin layer of paper thin skin draped over this fragile body before me. He was not moving very much at all, I was giving him orange juice with the use of a sponge on a stick. He would suck the juice from the sponge for a bit then he didn’t want anymore. I would get him to take a few sips of water through a straw just trying to keep him hydrated. At this point he was not eating or drinking; he had tubes and ports coming out of him everywhere. It broke my heart to see my dear father in such a terrible state.
Unable to Fulfil Father's Dying Wishes
My father’s wishes were that he died in his own home, he did not want to go to the hospice. We wanted to fulfill his wishes, but alas we could not. On the Wednesday morning I was sitting beside my dad at this point he was not talking and communicating very little. He started to wave his hand pointing towards his bottom and moaning. I asked him if his backside was sore, he nodded yes. I called my older brother into the room and asked him to help me lift our father over so we could have a look at his backside. Well my brother (Jim) and I were totally horrified at the awful sight we laid eyes on! It was a massive bedsore that was Grey and infected. I believe that this was the red sore that my father had complained about 2 months previous!
Stage 4 Bedsore
It had turned into this awful looking stage 4 bedsore, that we knew was beyond our skills of treatment. I said he needs to get medical treatment and be in a proper hospital bed where they can move him regularly. This in turn would help to lessen the levels of pain and discomfort my poor father was already enduring! In my heart I knew we had discovered the infected bedsore far too late. My father had multiple health conditions including diabetes. So, it was highly likely this wound had already developed sepsis, which basically can lead to death. At this stage of my father's illness he was basically at death's door. He was in a regular bed at home. When my brothers and I tried to move him and stuff pillows around him we were causing him more pain while trying to help him! We knew that we had to call Freeport to come and pick him up.
It was so heartbreaking for my brothers, mother and I to stand in the room while my mother told my father that he was going that afternoon to Freeport. He reacted by lifting his head up and eyes widened and he groaned out a sound of disagreement on going to Freeport hospital. We told him that his wound on his backside needed to be treated in a hospital. We told him how sorry we were that we could not keep him at home but this bedsore was beyond home treatment. If it had of been treated by his so-called palliative care doctor when it was first discovered my father might have got his last wish of dying at home.
I was horrified when I was told that his doctor had not visited him in person to oversee his care and check on his condition. My mother thinks perhaps the doctor made a quick visit early on in my dad's homecare. This my mother is unsure of. As my father’s illness advanced, so should have the level of his homecare! Alas he had a no-show doctor that I hold responsible for neglecting my father’s health care needs. How she can call herself a palliative care doctor when she does not make the effort to visit her terminally ill patient to assess the progression of his illness? She could have treated that bedsore before it had a chance to get to the awful stage 4 that it did. She could have been there on the front lines making sure that my father was as comfortable as possible in the last stages of his life. Instead, he had to die a slow and painful death not at home like he wished! Alas, instead in a strange, depressing room in Freeport hospital --the last place where he wanted to end his days!
Blessed to Be Present During Father's Final Moments
My mother, brothers and I were blessed in that we were in his hospital room on the Friday evening April 23rd 2021 at 6:05 when my father finally passed away. Earlier that day we had decided (as a family) to take him off the oxygen. As my father did not want to be kept alive at this stage of his illness. He passed away not once but three times, each time his head raised up, his eyes widened, he groaned, then he stopped breathing. Suddenly, there would be a big inward gasp and he was breathing again. It was shocking and horrifying to watch him pass away in such an awful and unsettling way! Finally, when he gave his final gasp I hoped that he found some comfort in knowing his family was surrounding him during his final moments here on earth.
Make Sure Proper Level of Care is Being Given to Your Loved One
I hope that by sharing my story it will help others out there that might be dealing with similar situations with a loved one receiving homecare. I would strongly suggest that you make sure that the caregivers are keeping proper records, even taking pictures of bedsores as they progress etc. Making sure that a doctor is visiting your loved one and giving a proper evaluation on a regular basis in person, not over the phone. Instead, keeping track and reevaluating the level of care the patient is in need of. Also checking for common injuries such as bedsores regularly. This is especially crucial for patients that are not mobile or are unable to move themselves to relieve the pressure points on their bodies.
Caregivers Need to Check for Bedsores Daily
Hopefully, you can learn from our mistakes, my family and I wanted the best for our father in terms of his healthcare. A big mistake we made was placing too much trust in the hands of the wrong people. People who were not equipped on diagnosing and treating my father’s rapidly declining health. I would say one of the top things homecare caregivers should be checking for daily on in-home-care patients is bedsores! We all want our loved ones to end their days in the most comfort and painless way that we can provide for them. Like allowing them to pass-away in a familiar environment—known as home sweet home—not in a strange and depressing room in a hospice!
Written by Pamela-anne Theresa Sara Kinney (James Michael Kinney's Favourite Daughter)
Pamela-anne (author) from Miller Lake on May 06, 2021:
I hope that by sharing my personal experience in coping with the final days of my beloved father's life; it will help others to make better choices for their ill loved ones in the future. Like overseeing the overall care plan and adjusting treatment as the person's illness progresses., To making sure they are receiving the level of care that they not only need but deserve!