Lost For Words

Following a diagnosis of logopenic aphasia, a rare form of dementia, in 2020, my father passed away in July. The “long goodbye” as dementia is now often termed is exactly that and, given its growing prevalence, I’d like to share three of the many things I learned during this difficult period in the hope that it may help those of you in a similar situation.?

?#1. The many different types?of dementia require distinct types of care and support. It’s vital that family, friends and carers understand how their loved one’s dementia will manifest and evolve.? My dad’s dementia was unlike any form I’d previously encountered or heard about. It first impacted his speech – a cruel irony for someone known as a great orator and who was usually called on to deliver speeches at family and community events. His inability to express himself, particularly towards the end, led people to think he was less cognizant than he was. Yet, right to the very end he knew who we were and retained some of the familiar twinkle in his eyes. For that I will be eternally grateful.

?#2. Caring for dementia requires experience and expertise. Reading online resources helps but is no substitute for a trained and experienced caregiver. Counterintuitively, the fact that you know and love a person with dementia can actually make you an ill-suited carer. Your instinct is to try to keep them as they were, to keep encouraging them to do things they’ve always done but now find difficult in the hope that you are slowing their progression. Actually, what is most needed is to simply meet them where they are. It’s why it’s?often much easier for someone who only knows them following a dementia diagnosis to become their primary carer, with input from you – and not the other way around.?

?This brings me to my next reflection: #3: Transitions are hard for families, particularly spouses. In our case, it became apparent some time ago that my dad needed specialist care and as much as my mum devoted herself to him 24/7, it became too much, even with support from professional caregivers who tended to defer to her. Essentially, for the reasons above, her care sometimes increased his anxiety, and the most stressful part of this journey was watching her battle on and insist that full-time care would only ever be a last resort to the detriment of her own health. This scenario seems to be many of my friends’ experience too, and it typically takes some sort of crisis situation to resolve it. There’s a huge amount of guilt associated with placing someone in care – even the terminology we typically use, i.e., “we put him in a care home” is loaded with self-reproach. What we are doing is ensuring that someone is in a safe, comfortable and supported environment. If you find the right care home (and can afford it), it can be better for everyone, including the spouse. The staff know how best to strike the right balance between encouraging them to do things and just letting things go. Once in a home, the carer can more easily call the shots, which is not always the case when you bring live-in care into your home with the spouse still ruling the roost. Ultimately you have to figure out what is right for your situation – and it may take time to agree what this should be.

?In the end, my dad’s life was curtailed following a 10-day hospital stay. The NHS has guidelines for the care of dementia patients in hospital, but this was not put into practice. The resources are simply not there, nor was there good continuity of care between hospital and care home when he came out. I’m thankful to have spent time with him shortly before he passed and to know he’s now in a better place, having died peacefully with mum at his side in a safe and caring environment.

?Almost 200 people paid their final respects to him – the sign of a life well-lived. Born in Anfield, Liverpool in 1940, my dad has made Liverpool FC our family bond. My last home game with my dad was watching Liverpool beat Manchester United 7 0 – how we laughed - and my final away game was the iconic 4 0 win at Leicester in December 2019. Memories to cherish forever. His four grandsons now carry this torch. Through family and football, he taught us the importance of sticking together, supporting one another, and relishing the bonds that unite us.?

RIP dad. Forever Red, YNWA.