Monday 27 August 2018

A Bad Train Day, and a spark or two within the fog of #Alzheimer's

On Saturday I had a Bad Train Day.  A few times a year I travel southwards to meet up with my sister and visit our mother in her care home, see other family and friends, and friends of my late father.  

Last week, the journey south was unusually easy; the stretch from Sheffield to Leicester was a positive joy.  A train with eight coaches, and about as many passengers.  I did not only have a table, but enjoyed it all to myself, a situation so rare that I was tempted to empty out the contents of my bag all over the table, just for the hell of it, which made a change from being given dirty looks from the person opposite me because my sandwich and propped up Kindle is encroaching one millimetre into their designated laptop territory.  No grizzling, unrestrained kiddies, no person in the seat behind discussing the ins and outs of the meeting she has just attended, at a volume that suggests this information is of interest to every person in Coach D.



I must have used up all my Good Train Day credits on that one hour-long stretch, for the journey back was what people these days describe as 'challenging'.  When I hit the Leicester to Sheffield leg, I realised that I was to pay for the blissful journey of four days earlier.  Remind me never to travel on the Saturday of a Bank Holiday weekend again.....

The train was so packed that I had to abandon all good manners just to force myself and my extremely heavy case into the coach.  Having elbowed my way past youngsters with earbuds in place who couldn't hear me saying 'excuse me please', I finally reached my booked seat to find that, of course, someone was sitting in it.  I did my usual; I produced my seat reservation, smiled, and politely told the girl sitting in it that she was in my seat.  Her answer: "Yeah but there was a woman with a little kid sitting in mine, like."  

I tried to point out, delicately and politely, that her generosity in giving up her seat and the fact that she was sitting in mine were actually unrelated, to which she said, "Yeah but she had a little kid like," and looked at me as if I'd suggested she make the mother and child walk to Sheffield.  In the end, I decided to make it simple.  I showed her my seat reservation and said, "This is seat B 61A, which I've booked, and I'd like to sit in it, please."  She started doing that rolling eyes and 'tssk' thing to the other people sitting round the table, some of whom joined in, clearly also unable to grasp that though her decision to give up her seat was admirable, it did not qualify her to nick mine.  Eventually a young man sitting opposite very kindly offered me his seat, I believe to stop a fight breaking out.



Leicester to Sheffield

The train from Sheffield to Newcastle was equally sardine can-like.  I oozed into the coach from between several ear-budded, cagouled bodies to find that someone was using the end-of-coach luggage rack as a seat.  He had made himself very comfortable, laptop beside him, and was most surprised when I asked him to get off so I could put my case on the shelf.  He must have been about a third of my age and stood by, most patiently, while I wrestled a case so heavy that it took me three attempts to lift it onto the rack.  I had to admire the way he waited for several minutes without complaining about the inconvenience, hands in pockets, grinning, for me to finish this feat, before squeezing himself back into the space beside it. 

Then I had to manoeuvre my way to my seat by clambering over all the cases in the aisle, because, it appeared, everyone but me was too polite to ask the lad to get off the damn luggage rack so they could use it for the purpose for which it was intended.

Sheffield to Newcastle

But the few days away were worth the struggle of the journey back.  On Wednesday, in the church where my dad used to go, a plaque has been put on the pew where he always used to sit, and the vicar gathered the small congregation round to see it and say a few words for Dad, which was lovely.



In the afternoon we went to see Mum.  She is 92, has had Alzheimer's for ten years, and has been in a care home for about six.  She can still walk around and, although she talks gobbledegook most of the time, now and again she comes out with some understandable words in response to something we've said.  When we visited her in June, there was a chap playing a guitar in the large dining room, and Mum was clearly enjoying the music.  I said, 'You used to sing in a choir, didn't you?' (Kings College London in the 1940s, when she was at university, I believe), and she looked round at me and said, 'Yes, I did', quite clearly.  

Us managing a conversation with Mum a couple of months ago!

This time, Julia talked to her about visiting her godmother, a friend of our parents' from many years ago.  Mum said, 'Oh yes', and tried to say her name. 

She usually recognises us, too.  My friend Zoe, who worked in an old people's home (all types of dementia) for many years, said that she can probably recognise our smell; Mum always picks up our hands and kisses them, as she did with Dad.  Also, she pointed out that as we stay in our parents' old house when we go to visit, we probably bring with it its familiar smell, too.  Thanks, Zoe; I hadn't thought of that.  It's logical, though, isn't it?  Because smell is the most evocative sense of all as far as memories are concerned.

Zoe believes, as I do, that people with long-term Alzheimer's remember and know about stuff all the time, even just for brief moments.  They're not just ga-ga.  Which is why it is so important to keep visiting and talking to them.  When Dad died eleven months ago I told Mum about it, and she didn't say anything, but she held my hand, looked into the distance and nodded; the nurses said she seemed very depressed and deteriorated for a few months afterwards, but has now perked up again.  Odd but true: they said she seemed depressed for the two days before he died, and on the day, before anyone at the home knew about it.  It's in her notes that are written up on a daily basis, to which we have access.

Last week Julia took this photo of her and me, which I think is lovely. 


This is a picture of her taken a few years before she became ill; I love this one.  Julia took it; one of those snaps that turns out so perfectly.



....and her, me and Julia, 59 years ago ~ I'm the one in the shawl!






*****

29 comments:

  1. I liked this post a lot.

    My great-grandmother had Alzheimer's. Those moments of lucidity in people with that disease are interesting. I was a child when she was diagnosed, so it wasn't until I was older that I understood why she occasionally remembered certain things but often did not.

    I'm glad your mother is being looked after well.

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    1. Thank you, Lydia! She's in a lovely home in a rural setting with some wonderful carers. I'm sure part of the reason that she remains lucid at times is that she still has people coming to see her, who she remembers. Dad visited twice a week until he died, and my brother still goes on a weekly basis.

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  2. What a beautiful, beautiful post.
    Not only will many people relate to this, they will most certainly derive comfort from your words...especially in relation to certain smells rekindling a memory that manages to bring our loved ones back to us, if only for a moment or two.
    I love the photo of you and your mum, Terry. It exudes love and tenderness as does all of the latter half of your post..
    As for the first half...you had me chuckling away 'cos of your feisty attitude...and angry 'cos of the sheer ignorance and lack of social courtesies that seem to abound in todays world.
    Yep...your post has had me whirling through a range of emotions....and I'm so glad to have read it. Hugs to your mum... xx

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    1. Thanks, Lynn... I remember that when Julia took the photo she said it reminded me of the one of Mum and me when I was 10 days old, except that it's sort of the other way round!

      Yeah, I'm getting too old for this train travel lark. I think it might be worth paying for first class, in future!!

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  3. Terry, I can so relate to your train travel highs and lows. I use the trains quite a lot here in NL and I am constantly in awe of how inconsiderate people can be in their general 'I'm alright, Jack' attitude to everyone else's discomfort. The photos of you with your mum and your moving stories touched me too. My dad didn't have Alzheimer's as such, but his condition in his last years was similar. Seeing him smile, or become fleetingly lucid was like seeing the sun break through the clouds. It's so important that they have visitors and it's lovely that you and Julia go together. A beautiful post, my dear!

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  4. My gosh, Terry...what a beautiful write. Tears. I am so glad I took time to read. Such a lovely photo of you and your beloved, Momma

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    1. Thanks, Machel - yes, it's such a lovely pic, isn't it?!

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  5. Hi Terry - lovely post with your reminiscences ... it's wonderful your mother was able to join in with occasional things and then you all become happy and relaxed. Music certainly helps so many illnesses - strokes too ... as Alzheimers ... love the photos you've given us. English trains and people ... not easy to say the least ... cheers Hilary

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    1. Thanks so much for reading, Hilary! Yes, Mum does seem to still like music - it was nice to see her enjoying it that day. x

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  6. Thank you Terry! My dad has Alzheimer's and at 93 has recently moved into residential care near me and I can now see him regularly. Previously he was 200 miles away at home with a care package and I did a lot of to and fro-ing and your lovely blog reninded me of how nice it is to have him near, now. I used to blog regularly about caring and his dementia (Some posts are on the Dementia Day-to-Day website that also shares other people's experience of dementia and is supported by the Institute of Mental Health) and wonder if I should return to the topic - I find it incredible how much of 'him' remains despite the complete loss of reason and memory. Thank you. Anne de Gruchy

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    1. Absolutely, Anne - so glad things are better for you now. I'd love to be able to see Mum more often, but she's 250 miles away from me. And yes, you're so right - every time I see one of those little sparks that is 'my mum', it's a moment to treasure. I will seek out your blog! Thanks so much for reading and commenting :)

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  7. Trains - it's a reminder why I use them so infrequently.

    Your Mum - many thanks for writing about her so candidly. It brought back a lot of memories.

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    1. Thanks for reading, Linda... it's hard, isn't it, but it's not all sad. As for those trains....!!

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  8. I’m sorry for your dreadful train journeys, T. How can people be so rude and inconsiderate? But I love these photos of your mum, especially that one of you and your mum, that’s really precious. Interesting about the memory and smell link too, it makes perfect sense.

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    1. Ah, serves me right for refusing to drive, G!! Yes - that smell thing was so obvious I don't know why it didn't occur to me before. She often stares at us for a while before her face softens up and we can see she remembers us - maybe it's a combination of many things.

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  9. It's a long time since I was on a train, Terry, but I do remember the first quiet hour from home to Swansea being as peaceful as your first journey and then the chaos and free-for-all and aggressive rudeness as more and more people got on the train to travel to Cardiff. It's a "me before you" that comes out on the road with drivers - makes me both angry and sad. I never discuss politics on social media but, thinking back, this started in the eighties. But it is the latter part of your post, which is so beautifully written that both gives me hope for us as a society; that there are people who still care for the vulnerable with love, and there are still families who love, whatever the circumstances. Your words brought back so many memories. Thank you.

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    1. That sounds about right - the 80s, when 'me first' took over from the hippie 60s and 70s!

      Dad used to go to see Mum twice a week, and he said he was always surprised by how few people had visitors, ever. I've hardly ever seen anyone visiting, either. It's such a shame; I am sure the fact that we all go as regularly as we can is one of the reasons why Mum is still functioning reasonably well. My brother goes once a week, still, but it's harder for Julia and me.

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  10. I love the pics of the people riding on the tops of trains and clinging on to the doors - feels like that sometimes! And that lovely pic I took of Mum was the last one, just to finish up the film (which dates it in itself) in summer 2001. I'm so glad I took it. You never know when you're taking that photo that one day is going to define how you remember the person best.

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    1. Oh yes, it's the perfect photo of her! So she was 75 - about 6 years before it started. You iz so right about what you said in the last sentence.

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  11. Thanks for that Terry, really interesting and moving. And it's so good that your mother is clearly contented and has nice people looking after her.

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    1. Thanks for reading - and yes, she is. Wonderful people who do this stuff!

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  12. Train journeys can be hell sometimes and people so ignorant. The photos are lovely, my mum had Alzheimer’s and I so agree with Julia’s comment about a photo bringing to mind the person at their best. A very beautiful, poignant post which I can totally relate to.

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  13. Your words brought tears to my eyes. And the photo of you with your mum is just lovely. Precious.

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  14. I travelled from Luton to Leeds by train this summer. Never, ever again. But I can relate to the dementia. My mum was at the start of her journey with it when she died of complications after a hip fracture; I often wonder if it was a blessing - or not. Hold on tight to the moments you have with your mum still.

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    1. Oh, I do so much, Linda - especially as Dad died last year. Those tiny moments of recognition are all we have left now! As for the trains, I don't drive so it's my only option. Sometimes fine, sometimes a nightmare!!

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  15. Lovely post and it is great to think your visits make a difference so many people give up you sound like a lovely family

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    1. Thanks for reading, Kerrie, and for your kind words! x

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