Dedicated to all of those juggling the role of carer and health professional.
Thank you so much to everyone who read my last blog ‘My Journey to Humanity’ and fed back that they enjoyed it. I was a little overwhelmed and feel very privileged to have connected with so many people.
In my previous blog I began to tell you about the many hats I wear in life. As I said, I am many things to many people. Today I would like to tell you about my role as my grandfather’s carer and advocate.
Holistically I am bound to tell you about my grandfather as a whole person, he is in fact quite a remarkable man. Born in Germany in 1926, as a young man he joined the Luftwaffe. I don’t feel like it’s appropriate to tell you the few details that I do know. I am one of the only people he trusts in the world. He does not speak about the war “It’s done”. What I will share is that on D-Day he was the only surviving member of his group of friends and after his release as a POW years later, he never returned to Germany for fear that his family had died in the Dresden bombings.
He relocated to the Midlands and led a colourful life. He founded a gliding club, became a professional middle weight boxer and was even a model for a local photographer at one time. To this day we can be talking and he will tell me something I didn’t know about him before; like a wooden ornament I had always played with as a child that only last week informed me he won for ballroom dancing. We laughed out loud that he can still surprise me. We laugh a lot. When I was five years old I remember watching him one Christmas day as he slept off his meal (and schnapps). He had gone to sleep on my bed and as I sat in the dark watching his chest rise and fall I remember becoming engulfed by fear that he might die and that I would miss him so much. I woke him and told him that he could never die, he could never leave me. He always has been and always will be my best friend.
This man is no saint however. His pride has let him down many times in his life, this has softened with age though (and a lot of direction from his granddaughter). For one reason or another he is estranged from some of our key family members and with my father living 200 miles away I have had the privilege of caring for him through his winter years.
Despite numerous heart attacks dating back to my birth and eating a traditional German diet of saturated fat dressed up as a sausage, his health did not begin to decline until I transferred to my nursing degree. I arrived as usual on a Saturday morning to an unusually stern stare and a letter thrust into my hand. A leaflet diagnosing COPD to pass to paramedics if they were called. Although my training was at this point in its infancy, I knew that this diagnosis was incorrect. I wrote to his GP and explained my concerns and his symptoms, explaining that I would prefer that he not know I was involved but asking him to call grandad in for a routine appointment. The GP was very obliging. I never asked for information and no confidentiality was ever broken, but he frequently sought out my opinion of his condition and finally persuaded grandad that he should trust me to attend with him for future appointments. Within a few days we had an appointment with the cardiology team. Grandad had severe mitral valve regurgitation and late stage heart failure.
I had read every medical guideline available, I understood exactly what this diagnosis meant and how it would end. But as I looked at my grandfather who despite his poor health was still flirting with and charming the young doctor, I knew that unless he asked me I should keep my knowledge to myself. His deterioration was quite rapid. He went from being able to care for him-self in his own flat to needing assistance to walk; to a wheel chair within weeks.
This loss of his independence and move to a nursing home has been by far the hardest thing for us to deal with. Not only have I watched my incredibly stubborn and independent grandfather loose his control, I have watched him battle internally with his sense of self. It shook the bedrock of our friendship in ways I did not think possible too. After all he saw my interventions and ‘help’ strip him of what he wanted to do and he held me entirely accountable. From my first letter to his GP I have made clear to all of his medical professionals that I want to remain grandad’s granddaughter first. He should make his own choices, I would guide him but he would make decisions for himself. After all, the man is sharp as a tack. As anyone trained medically that had cared for their own will know, this is not an easy task. I have always kept grandads dignity and need to be the adult in our relationship at the forefront of my mind. To him I will always be his little girl, I still sit on his knee and I’m 35! But I am also now a nurse. I have my own expectations of care and being in a position where I am constantly trying to advocate without hindering his care is incredibly difficult.
I have built some fantastic therapeutic relationships with those caring for my grandad. He usually introduces me by saying “talk to her and be careful she knows what she’s doing!” For me I have always been awarded a respect that I am the expert in his health. Yet I have seen so many times in practice patients who have family members with medical knowledge treated differently, either through over compensation or a guarded fear. Their families know what’s going on and have higher expectations than your average Joe. When they challenge care, they are seen as awkward, demanding or threatening. And let’s not forget that without medical knowledge, any family member caring for a loved one should always be relied upon for their own expertise. I make sure in practice that I use my perspective, I know what it is like to feel fiercely protective and want to shield the one I love from the substandard care I have seen. With this in mind for grandad, I have tried not to interject unless necessary. Yet at times with every ounce of diplomacy that I have, I have to request the basics.
In August last year I was told that Grandad would not survive a month. On Boxing Day I was told he would not see his birthday in January. In July during an acute exacerbation of his symptoms, the McMillan nurse told me he had days. Well let me tell you my grandfather is a typical product of German engineering and his sheer tenacity is keeps him going today. He wants to see me qualify and although he is classed as at the end stage of his illness, nothing would surprise me. He just isn’t ready yet, and neither am I.
I do not see the weekly GP consultations to discuss his medication as a chore. Yes, I am saddened that I feel the need to keep such a close eye on changes to his medication, because ultimately I will have to explain them to nursing assistants at the home frequently. I see it as my job to sit as his feet with my head on his knee like I did as a child, the only difference is now I do this whilst taking his pulse, resp rate and CRT to report back to the GP as she won’t have it written in his notes. I do not begrudge the multiple times I have spent days sleeping next to him in the home while he battles a chest infection and we think he may be leaving us. I will do it all again and I will continue to do it for as long as he needs me. Because I love this old man with all of my heart and it is my firm belief that we need to take responsibility for our own. Our communities need to value their elderly and show them that they contribute to our happiness, it literally extends life. I’ve been inspired so many times watching the tenderness between my patients and their families. The love and co-dependencies. The delicate intricacies of who we are and what we mean to each-other. They fill me with a certainty that we will reach humanity without the need for anything but one another.
Thank you for reading. Love and light to you all
Dedicated to all of those juggling the role of carer and health professional.