annanotbob2's Diaryland Diary


Two Years

It's been a lost time, lost to yearning for my Sammie, angry with her for not coming back, for keeping up this being dead nonsense when it's not even funny any more. I mean, where is she? She's got to be somewhere, surely, she can't just not be. And that's it, that's me, right now, that's the sum total of who I am. A carved out empty space waiting for my daughter to come home so we can all go back to living our lives. I mean I am still living, I suppose - I turn up and speak and smile and do shit and if I could connect with it at all it would all be good, or even great, I'm sure. So much that I would have wished for but that seems like nothing now. I just want her back. I want to see what she's like at 43 - she was early 30s when she started slipping away and we never got to see her in her full adulthood, settled into whoever she became. I don't know what else to say. Tomorrow is the anniversary of her death, the second. Last year was awful and I expect this will be as well, but differently so. Daughter is doing her thing with her people and I'm spending the day with Son. We're going to have a meal and go to the beach, the secret sea glass beach which is like a place of grief to me and to him - my brother and Sam were both dying when I first went there and it's always been some consolation, somehow. The big industrial buildings on the shore, the disintegrating, rusty metal sea defences, the way the sea is most powerful here and heaves the shingle into different levels every day almost.

I wanted to write about her, but it's too late, too long ago. Ten years ago, when I look back at this blog, I find this:

The last two days have been very productive, mainly about moving Elder Daughter's situation forward. She asked me to be her advocate/spokesperson, but I hadn't really realised how little she's able to accomplish for herself these days due to 'brain fog'. In her case this is due to the MS but I'm no stranger to lack of cognitive capacity myself so I know where she's coming from with it.

Yesterday I woke up and had the same telephone conversation with her that I seem to have had again and again and again. I said the things I've said so many times before - yes, she is imprisoned at the moment, she's right, it's awful, terrible.


It can be transformed with a series of little steps, some of which I can do, some of which she must do. But her ability to do anything at all diminishes with every whole day she doesn't spend in my company and it's been a while (since I decided that SIL may have his own side of the story but I don't give a fuck, I can't look at him without wanting to do any one of a number of things which would only make the situation worse. And I haven't had the wherewithal to summon up the energy required to play nice with him when it is so far from how I want to play).

Yesterday morning I put the phone down and had a real rock bottom moment. Quite a long moment, but hey ho, when you hit the bottom you bounce back and (as I may not have mentioned for a while), I am a senior member of the Bounce Back Brigade and that was how it went.

The key problem seemed to be that I don't actually have MS and ED still doesn't know anyone else who has it - I can say all I like that she will have an active life full of love and laughter, but, what do I know? So. A while ago we'd heard about a closed facebook page/group/whatever for women with MS and ED had tried to join it. What happened to that? I found the page and wrote to the administrator who replied at once, saying she'd check it out and did I know there was a closed page for family/carers? I didn't then, but here I am now, a mere 24 hours later, embraced into a new community, already with a date to go to the British Museum with ED, grandson, a group of MSers and their kids. Phew. Thank fuck for the internet and the much-maligned FB. Here's the link (waves at friends she thinks might be interested). It originated here and has only been running for six months or so, but I've already met a writer living in CA. The bit that clicked with ED at once was the acronym CUTO, which stands for Chin up, Tits Out. Brilliant.

As well as that I
1) phoned grandson's school and spoke to the student support woman about his home circumstances.
2) phoned the MS Therapy Centre (I'm not sure when I did this - maybe I wrote about it already) and they phoned ED and arranged an appt for a couple of weeks time.
3) spent an evening with M, who turned up for a home cooked dinner, was palmed off with a mediocre take away and gave me some shit hot advice based on his years of working in the NHS. Can't remember it as I was very stoned, but it was very motivational.
4) discovered the existence of 'dial-a-ride' for those who can't use public transport and arranged for them to send her an info pack
5) spoke to her GP about her isolation and mental deterioration and tendency to tell people she's fine because she's so lifted by the very sight of someone coming to her door. The GP is going to visit. I spoke to ED about telling the bloody truth, like she does to me, not putting a brave face on it, but I hope to have the opportunity to reinforce that immediately before the visit.

So you see she was already gone then really. My darling. And I can't remember before that with any clarity - I can't even remember that without the blog.

So we'll do whatever we do and I hope to come back and write again as I miss you all. I haven't even been here to read so I hope you are well, old friends, and keeping safe.

11:29 p.m. - 31.08.21


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Reading and writing - 04.10.21
Cats and Dogs - 02.10.21
Hard - 01.10.21
Getting back into the groove - 29.09.21
Bella dreaming - 12.09.21

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