I still remember Christmas as a child. We were pretty much happy and healthy. As a Preacher’s Kid, I knew that the day would focus on church. Actually, we only opened one present in the morning before going to church. Once that was out of the way we would gather around the Christmas tree, us kids eyeing up the gifts there, but knowing they had to be opened one gift at a time, one person at a time. My brothers would be the same as me in watching carefully to ‘make sure’ that the gift distribution was fair and even. There was never a whole lot of money in the house and so presents were small, but I never felt I was going without.
The next focus would be food, that my mother prepared. Turkey, sometimes ham, followed by pavlova, sometimes trifle and always, fruit salad. My parents didn’t drink alcohol and so we drank fruit punch. My mother, a dietitian, was a great cook and it was always a good meal, with leftovers that would keep the family going for days.
But that was Christmas then. This is Christmas now.
This Christmas, illness steps up and into the way. It is such a focus that it comes first before gifts and food. Before even, who we might share the day with. I’m talking about my illness, but even before that, my mother’s illness.
As an adult battling firstly mental illness, and more recently chronic physical illness, Christmas has sometimes been ignored because of the need to simply survive ( and I mean survive literally) the day. There was one year in the 1990s where I was far from home, waiting to be admitted to a psychiatric treatment programme. There was no celebration. No gifts. No family. Not even friends. And having Anorexia at that time, there was as little food as I could manage. You could tell that I hardly had the best attitude towards the impending treatment. I walked the streets of the strange city I was in. It was exercise, it was something to do. It helped to forget what the rest of the world was doing.
Another year, discharged from hospital on Christmas Eve, I was put into respite care, still not safe enough to be allowed home but no bed available in the hospital. I watched TV that year, with my minder, a fellow ‘inmate’ and at times, my then-husband. Again, no celebration. Severe depression ruled that there was nothing to celebrate. I simply didn’t care that it was Christmas. Mental illness does not stop for Christmas.
More recently it has been a case that physical illness also doesn’t stop for Christmas. Pain doesn’t simply go away so that we can celebrate freely. My feet and legs (currently worst for me right now) aren’t free of pain. Fatigue doesn’t lift so that we have the energy for all the Christmas preparations, let alone celebrating the day. It’s fair to say that it’s a case of ploughing on regardless of the physical illness. I will recover tomorrow. For today, no one is interested in such bare realities as pain.
And now, my mother’s health is the centrepiece of the Christmas table. Those of you who followed my last blog, Infinite Sadness… or hope? will know that my nearly 90-year-old mother lives with Alzheimer’s Disease. Christmas most definitely does not stop for Alzheimer’s Disease or any other form of dementia.
Since Mum was diagnosed a few years ago, each year has been something different in how Alzheimer’s has stepped up to interrupt Christmas. One year I was camped on her lounge floor, on the most uncomfortable sofa bed ever, because Mum had been wandering unsafely, and I was waiting to get her out of her own home (no longer safe for her) and into nursing rest home care. At the time it’s fair to say that Mum and I didn’t enjoy each other’s company. But that didn’t matter. I was all she had at the time, and actually, on that day, she was all I had.
Last year I had just shifted her into secure dementia care two days before Christmas because she had been assessed as needing a higher level of care and couldn’t remain where she was. Last year, Christmas dinner just didn’t happen for me. It was a welcome couple of hours break at home before taking Mum out for a visit to other family members. And that would be really hard work.
It’s taken me all those years, and many more, to understand that illness doesn’t stop for Christmas. Take the images we see on television, Netflix, social media and more. You would think that illness, particularly chronic illness doesn’t exist at Christmas. One would think that we are all healthy and happy, celebrating Christmas with our families. That everyone would have someone special to celebrate the day with. That everyone would have money for gifts and for food. No one would be in pain. No one would have lost the memory of those people they love. No one would be confused, depressed or suffering.
Mum has limited awareness this year of it being Christmas. Her residence is full to overflowing with Christmas decorations and a Christmas tree. She has already had one ‘Christmas dinner’ a few days ago, with her fellow residents. Some of those residents will get to go today to celebrate with their families. But they will all have limited understanding of where they are, who they’re with and what they’re doing. They simply don’t remember. And they are confused. Almost constantly.
After a few years now of concentrating learning in Alzheimer’s Disease, I know that Mum needs to feel comfortable in her surroundings, and mainly because of that I will be ‘celebrating’ Christmas at the dementia facility where she lives, at her pace. If she’d rather doze in her chair all day, that’s okay. It’s okay to just be. Sadly, other family members are not available to be with her in any setting, and actually, at this stage, I am the only person she still knows so maybe it is for the best. Anyone else is just another stranger to her.
I don’t care that illness doesn’t stop for Christmas (sorry about the double negative). Whatever illness we face, we need to let it happen at Christmas. Otherwise, my experience tells me that we might suffer for days following. What I hope is that the people who matter to us will understand that. They will understand that illness is part of who we are and that we can’t just shake it off for a day. Illness doesn’t work like that. It’s not like in the movies.
Merry Christmas, Happy holidays for whatever occasion you might be celebrating today. I hope that you can enjoy the day, and I hope above all else that you can allow yourself to have your illness today too. Take my mother’s example and just be. I hope you have the freedom to do that.
Thanks for reading