Hopes For Another Year

What are you doing tonight? What I mean is, what are you doing for New Years? The great celebration of New Year’s Eve. It is great, isn’t it?

I’m not so convinced, but then you could just say I’m old, down on myself and I have few friends to spend it with. Any number of those might or might not be true, but for a long time now, I have been less than impressed by the ‘great’ New Year’s celebrations. Please, can’t we just skip to February and carry on as if nothing is different?

New Year celebrations are great if you’re twenty-something, physically and mentally healthy, have money in your purse, have mountains of people you want to spend that occasion with, and while I’m at it, you’re probably an extrovert.

Am I any of those things? The short answer is no. And perhaps that’s my excuse for planning to go to bed tonight, at the usual time (early by most people’s standards) and if I wake (get woken) up at any time while it’s still dark, my cat, Hobbes will have a lot of explaining to do simply because he’s the usual culprit (other than just normal insomnia).

Before I go on, it’s important to point out just what would happen if I didn’t do that, if I stayed up until 12.05am, or even say, 2am. I would be very likely to spend at least the next few days in bed in an unreasonable amount of pain, not to mention fatigue. And my brain would turn even mushier than usual (brain fog).

It’s just not worth it to stay up that late and have a change of routine. I have to spend too many days in bed as it is, the last thing I want is self-inflicted New Year celebration pain/fatigue/numerous other symptoms.

Health has been a determining factor in New Year activities for more time than it should. But that’s not about to end. My chronic illness is in it for the long haul. But even before that, I struggled with this occasion.

It’s really hard to celebrate yet another year when you’re suicidal. It’s even harder when mental illness has turned life to hell and getting through the next day seems impossible without facing 365 more days. It’s just not even a bad joke. It’s beyond thinking to consider that another year is ahead, and because you might be depressed in amongst other illnesses, you can’t bear to have another year like the one you’ve just had.

I saw a meme on Facebook yesterday that loudly proclaimed that 2018 would be a better year. Really? Who said? How do you know that 2018 will be a better year? Yes, I guess we can hope. And hope is all important, especially on this occasion, but what if 2018 is a worse year? Who’s to say it won’t be?

In her (and my) younger years, my mother used to like greeting her family first thing on New Year’s Day morning with a chirpy “Happy New Year”. That’s fair enough, isn’t it? I should add that she wasn’t out late celebrating the night before, and she didn’t drink so wasn’t nursing a hangover.

Lots of people will be saying ‘Happy New Year’ on Monday. I admit that I cringe every time I hear it. The first year I was suffering from Major Depressive Disorder and was quietly (I mean I hadn’t admitted it to my parents even though I was staying at their home) desperately suicidal she was a bit stuck. And so for the next following years (too many to count), she would skip the “Happy New Year” and give me a “Well, I hope next year is better than last”. You can’t argue with her thinking, but I didn’t want to even know I was facing another year. “Mum, can’t we just skip this and get on with breakfast?”

My mother hoped that the next year would be better, and I can look back and be thankful that she hoped on my behalf because hope was completely beyond me. It’s funny (okay, well not really at all) that I am left thinking about the year ahead in terms of both my mother and myself. This time I need to hold the hope for her.

I can say with certainty that because of Alzheimer’s Disease, 2018 won’t be easy on Mum. It’s a disease that just keeps getting worse. There’s no chance of recovery and there’s no chance that 2018 will be a better year than the one we’ve just had. The disease will continue to destroy her, bit by bit. There will be less and less of a functioning brain. How do you celebrate New Year when that is ahead of you?

My hope for Mum is that her suffering is eased by the love of those around her, even those who she no longer knows. My hope is that she won’t feel alone or scared. My hope is that she will have peace.

I’m inclined to think that those hopes were something of what Mum has hoped for me, particularly in my many years of disabling mental illness. What is sad is that Mum and I didn’t have, in those years, a relationship in which she could share that with me. We weren’t close, and she and I both knew that much of what she might try to say usually ended in harsh words. It was safer to keep the silence between us. Thankfully, our relationship has changed, although too late to have those conversations.

Mum no longer comprehends that I struggle with illness of any sort. When I can’t visit her, I tell her why but she doesn’t remember the past years nor the journey I have been on. That’s probably a good thing (if any good can be found in her suffering). Maybe it means that she can join in the New Year celebrations at the dementia care facility where she lives. If she can have hopes, maybe she can hope that 2018 is better for both of us. She doesn’t understand that illness deems that unlikely.

But hey, if you’re going out to celebrate New Year with friends or family, have fun. Be safe. And take a moment to think about what you hope for in 2018.

I leave you with a quote. I read this today and was inspired by it. Maybe you will be too. I guess it is my hope for myself for the coming year. To be nobody but myself in 2018.

“To be nobody but yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.”
― E.E. Cummings

Thanks for reading

 

Cate

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Illness Doesn’t Stop For Christmas

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.

640px-PohutukawaCornwallis
Pohutakawa Tree, or New Zealand’s own Christmas Tree because it flowers in December. Cornwallis, Auckland. By Ed323 at English Wikipedia – Transferred from en.wikipedia to Commons., Public Domain, https://commons.wikimedia.org/w/index.php?curid=3980193

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

 

Cate