(As featured on https://www.gileadmh.com/)
I was only 17 when we noticed the change my dad. He had been in the police service for a long time and he was outstanding at his job. He run a tight ship at home and work, and we loved the joy he brought and kept in our home. But that all changed and he wasn’t the same man anymore. However, that wasn’t the real onset of the challenges.
In 1985, he had a spell in his health and ended in a diabetic coma that significantly reduced his strength and vitality. Though he loved his work and strove to continue working, this health incident took a toll on his ability to remain at the top of his game and in time he had to retire from his life’s passion. After so many years in the force, it was a little hard to integrate back into civilian life. Imagine having a regime for over 20 years and suddenly have nothing to do every day. Our lives changed forever.
We never fully anticipate that one change can could transform a community. We all noticed changes in his behaviour but we called it the normal process of aging. You know how it is when people grow older and they do all manner of things that don’t make sense and just say they are old. He was changing, he was becoming less that we knew, he was forgetting more and more. What we didn’t know was that the changes in his behaviour were actually the early signs of dementia.
Dementia has a funny way of masquerading like or riding alongside other aliments. It is known to be shrouded by diabetes, hypertension and other lifestyle disease. It mimics old age and adaptation challenges and is easy to miss for a long time. We didn’t see it in dad because of his health challenge with diabetes. As we faced more and more challenges like loss of loved ones, changes in the environment, loss of funds and property his episodes became more evident and intense and we chalked it up to challenges in dealing. Yet so much was going on that we did not know or have anything to measure the changes going on around us against.
The reality is that by the time we found a doctor who told us what was really going on it was 20 years of struggle and we had been ostracised from certain sections of our lives. We got the final diagnosis in 2007 and the years before that begun to make sense but we didn’t have much time to change much for his life because he left us two years later. Basically, he was diagnosed when he was in end stage dementia.
The difficult part about dementia is that as the patient loses portions of their memories, they settle into places in their early lives and reject anything that doesn’t fit their memories. They forget whole sectors of their lives so when one tries to explain things to them and their explanation doesn’t align with the patient’s thoughts anger and combative behaviour surface. Patients forget so much that even things like eating an hour ago is forgotten and they could accuse their caregivers of starving them. They wander off going to places they knew and loved so could easily get lost.
Everyday it broke us a little more as the watched this once eloquent, stately, strong man diminish every day. He forgot some of us, he got angry with us for not being obedient, he doubted our love and commitment to him. It broke our hearts to watch him get weaker and sadder whenever one of us moved because he could not go back to the places that used to bring him joy.
Dementia is harsh because it affects the brain directly and as the brain ceases its function, so do the rest of the body processes. There are three main stages in dementia that affect different individuals differently. The first stage is where the person forgets, repeats themselves a lot, are aggressive, could be unmotivated or hyper. The middle stage is where their safety is at risk because the tend to wander away as they look for thing that made them happy. In this stage there is still the possibility of being hyper or hypo (slow). The late stage is when they can do nothing for themselves and in a simple sense even the brain forgets to give simple instructions like breath…. This is the when the patient just dies.
It is a very difficult illness to deal with because the toll is unseen especially in the care givers. You watch the person you love become a different person, you watch them fade away and totally disappear. You experience stigma because of things the patient will say to others like you are starving them or that you beat them. You find yourself side-lined in society and especially in Africa you find the conversation about being bewitched coming up repeatedly. The realisation that there is nothing you can do to stop this illness taking its toll is heart-breaking for family and caregivers. There are interventions to slow the progress, but the reality is the end of this is known. The emotional toll of the illness makes it very lonely to be a caregiver and to find the strength to keep going.
Even on this journey, I urge you to find joy…yes find joy. There is joy in the fact that you still have time together. There is joy because the tales of the past can be so entertaining and fulfilling. The joy is in the knowledge that each one can and will grow into wonderful patient and kind people from this experience. Do not let the challenges of the season drive you mad, find a group of people who are going through or have been through this journey and will understand.