DEMENTIA CARE: SUPPORT FOR GRIEF WHILE BEING A CARER.

Again I find it difficult to create the blog post I want and need to put out there. I’m now posting this month’s blog entry on the last day of the month instead of the first day. And this isn’t the blog post I began all that time ago. What to do?
   Delay, delay, delay…
   I will delay the post I want to write by yet another month. But…I might as well write about the reason for the delay here in concrete terms. There’s been a death in the family. I’ve had support, and I am doing better. Storms roll in off the ocean, and they are bearable. I’m constantly struggling with the storm of being a dementia carer.
   In comes Storm Covid. I deal with it. There are only a few upsets to routine that continue to this day. (The major upset was no time off. I’m handling that okay, surprisingly. Sneaked all my holidays in under the wire before the boom came down.)
   I don’t see positive changes coming this year, to bring routine closer to normal. That’s okay. We do what we do to keep going. In many ways, I am well-suited to handling the daily problems of Storm Covid. If I’m brutally honest, here…
   It’s the people who aren’t carers who struggled more with the unusual changes, based on my observations.
   Two storms I can handle. My health is okay. So, no storm on that weather front. But another storm loomed on the horizon. And I’ve known about the presence of this one for a long time. I had the radar picture showing me the edges of the storm slipping into my region.
   We’d already said our goodbyes, in case the medicine didn’t do its work. Then the medicine worked and all was well, for a time. The storm looked as though it would veer off. Well, the news came to me around mid-year last year. A second bout of treatment…
   I was hopeful, but October last year was bad for her. The storm made landfall this year, and I’ve been dealing with it for months. Who am I talking about? A relative. We’d already said our goodbyes. Unspoken, we said them.
   She was startled by my stern instruction. I’m the older cousin. Outlive me. She agreed to try to do something about that. There was pain behind her eyes telling me she couldn’t imagine a world without me in it.
   At least three people have told me that I am not aloud to die. You’d think, perhaps, I meant something to someone at sometime, for fuck’s sake. My cousin didn’t say the same thing those other women said to me. Not aloud. She said it with that look behind her eyes.

I wasn’t to die.

Now here I am in a world that doesn’t have her laughter in it, her insanity, her boundless energy, her quiet Scottish sadness that was so still and proper and no’ et a’ like hurrr…as we hugged goodbye – and I very Scottishly prevented myself from shedding a tear the day she told me she was dying of cancer.
   I was at her mother’s wedding. No, I will not post the photograph of myself with the bride. There’s a photo of my cousin held by my great-grandmother – a woman who lived to within shouting-distance of her centenary, which is the reason I have fond memories of her across the gulfs of space and time.
   Once, on a hospital visit to my cousin, I waited outside while others crowded in. I stood on a pipe, and a nurse glared oot the windae at this small boy breaking no laws. The wee boy didn’t care.
   Almost every school holiday, there’d be a mad Monday visit. Buses, in rain. Running through the streets to see my grandpa. And there she’d be, bursting in the door herself, with all the trivial news kids need to tell their grandparents.
   Energy. Always energy. A daft wee lassie, mad, breathless, racing through the streets on her own adventure. Dragging us along with her, into that world. Writing your name in the sand on the ever-changing beach. Discovering jellyfish.
   Eating a really cheap tall thin ice-lolly that I can only describe as tasting of red. The wee shop stood in our path from her hoose tae grandpa’s hoose. Except, we called him oor papa. She called him that more than we did.
   Originally, I created this blog as an outlet for another type of writing. Scots. Ah jist couldnae get intae the frame o’ brain furra stab et it. So I left the blog to wither on the wind. Until I became a dementia carer. Then I could speak here of things I wouldn’t discuss in my life over there. Wherever there is.
   For weeks and weeks, I’ve been trying to write down the text messages between us. We would text in broad Scots. That’ll be my next blog post. The texts. Looks as though this blog will see some Scottish words placed prominently in it for a change.
   I was reminded of how great a part of our childhood my cousin was. For weeks, I remembered her well. The tears, the true tears, would not come. With reason. We’d made a pact, when saying goodbye, that she wasn’t saying goodbye at all. She’d live.
   All the negative stuff in dementia care sticks in the mind. This is why I don’t choose any TV channels with news bulletins on them. It’s wall-to-wall music or cookery shows or whatever the fuck stays positive.
   There is no way to explain a death in the family to my mother. She would be in shock. And an hour later, the negativity would still be there and she’d realise the news all over again. Be in shock. Again.
   She’d live with that constantly. And I’d have to deal with that shock, constantly. No good. Can’t be done. I had to pretend to keep my cousin alive, in case it came up. Not pleasant, but there it is. And, of course, it came up.
   One of the daily carers has the same name as my cousin. Her name floated through the room. And I was ready to deal with that. It was the plan. She was still alive. No problem. And no tears from me. We were right to arrange things this way. I was absolutely prepared for this moment. Everything’s fine.
   We were still shielding when she died. I don’t even know where she’s buried. Or if she’s buried. Maybe she wanted to be cremated and stored in a cocktail shaker. That’s her kind of humour. Just lift her aff the fireplace and shoogle her aboot to let her ken we’re a’ still thinkin’ o’ her.
   It’s too soon for me to go into details. But I’ll find her, and likely share a dram wi’ her, and laugh at the things she said and did. If I can keep it together. In front of my mother and the carer who bears the same name, that’s no problem.
   But in the loft after midnight, hunting out old photos…I knew there weren’t any pictures of her there. First thing I find is a gift label for my mother in my cousin’s handwriting, going back nearly twenty years.
   Six photos down and I turn over the picture that stabs me in the heart. It’s not a recent photo, though that would cut me to the bone just the same. No. It’s a school photo, that I will not share with you here.
   She’s that wee lassie trying to look like an angel and nearly succeeding. There is nae escapin’ the mischievous glint behin’ the eyes. She’s the mad wee lassie we’d run through the streets with, as if the streets belonged to us – even though we’d travelled a few towns over to see her.

As if the streets were ours. Well, they were.

In the strangeness of grief, and with the shielding still in place, all I could do was write a very strange card with my condolences. We agreed to keep her alive. And she lived again in the cards I had to write. Her spirit was in the words, written in Scots, that I used to convey who she was and what she meant to those who cared.
   And there are loads of people in the Covid-19 world who had to deal with this problem of not being able to convey anything. You lose people. The virus restrictions intervene. No final farewell. You evaluate the risk. I must not bring disease into this house. There is NOTHING I can say about the loss…
   She was part of my childhood, and she provided her own brand of support while I dealt with being a dementia carer in adulthood. Though, obviously, neither of us truly ever grew up. I lost a family member, a friend, a mad cousin, a supporter…

What of support, now? I’ve been ably assisted by people who understand that I am going through a very strange time. Keeping her alive cost me an awful lot of energy. As I type this final section of the blog, the carer has been gone an hour. The carer who shares my cousin’s name. Keeping her alive was a plan that worked.
   The tears were a good two months in coming. Never go looking for photos in the loft at midnight. You’ll find what you were not looking for. Don’t fold up like a rag-doll on your bed at one in the morning staring at a photo you knew couldn’t possibly be there.
   I grieve. Get it out of my system. Support is there for you. Two government departments were phoning up today, just to make sure I was okay. They didn’t know of my grief, but I was asked by the Social Work section if I needed anything.
   Luckily, I have amazing people in my personal life. Not everyone has people there in the isolated world of being a carer. If you don’t have anyone personal, local, or hooked up to the internet to visit virtually and digitally limit the spread of Covid-19, reach out to the officials.
   I’m receiving grief counselling from a friend. Well, chatting to a friend is grief counselling in a casual atmosphere, right. If there’s no one for you, there are officials. Nurses, doctors, the local council housing office, the Social Work department, the people at Daycare, the daily carers, hell you could talk to one of the bin-men in a pinch. Six feet away, masked, mind.
   Yes, I am experiencing bereavement. I could reach out and talk to anyone. Yes, I am healing. No, I’ll never get over the fact that she died so young. That she died before me. She should be pouring me a dram in memory of my passing, and no’ the ither wey aboot.

   I have people to talk to.

   There’s no way to get through this alone.

   Find someone, anyone, and ask for help if being a carer shuts you off during grief. Especially if Covid-19 or any other major event cuts you off during grief. Don’t cut yourself off from help. I have help and, by fuck, I use it. 

   It’s been a struggle. Posting the blog on the last day of the month is no good, but you do what you have to do. Priorities. To look after someone, first take care of yourself. If taking care of yourself means reaching out to people, do that. I’ll cry in front of someone if it gets me through a rough moment. It sure as shit beats crying alone at one in the morning.
   Need help? Seek help. Accept the help. Let the help work through your system. There’s no crime in having a moment of happiness underneath the worst of the storms. I’ll end this here. Initially, I struggled to think of anything to say. Now I’m growing positively wordy.
   Aye. Huvvin’ a blether. Whit urrr ye like?!