Visiting Mum

My Mum lives in a care-home because she has early onset Alzheimer’s, a cruel form of a cruel disease that goes after people under 65. This can be particularly tricky because the sufferers are often still in their prime with highly-responsible jobs and dependents. Mum was a nursery school headteacher, and I was still at school and my sisters still at university, when she began asking us “Have you eaten enough?” several times an hour. Visiting Mum really is the least I can do and at the third time of asking I hopped on the train from London to Birmingham, and then from Birmingham to far-flung Rowley Regis, to see my mother.

Mum

Mum, July ’16.

Two and a half hours later when I strolled into Mum’s grey – but excellent – care-home I could immediately tell she was in a great mood. She recognised me instantly, smiled broadly, and waved in her signature manic way when her jewellery – a collection of ‘New Age’ type stones found in tourist shops in Cornwall and Celtic metalwork – clicks and clacks like a little maraca.

“Hello Mum,” I said.

“Hello!” came the reply.

If still physically possible one of the most important things to do when visiting a loved one in a care-home is to get out of there as quickly as possible. The other patients wander around and stare at you and it smells like miscellaneous cleaning products. I grabbed Mum and we shot off around the corner to a cafe which is more like a Little Chef. As we were walking along, her little legs a blur of activity, we caught up on lost time.

“So how have you been?” I asked.

“Well thanks!”

“What have you been doing?”

“Oh just, you know…just going to the what-not.”

“Oh yeah, same,” I replied.

We got to the cafe and ordered two cups of tea, a slice of lemon meringue for me and, after minutes of furtive deliberation, involving pointing at different cakes and fingering the wrapping of the various bars on offer, a caramel shortbread for Mum. We sat down as she rubbed her hands incessantly, creating a pleasant dry and scratchy sound. I had recently enjoyed both series of the excellent “Catastrophe” on Channel 4 and thought this could be a fruitful conversational boulevard.

“So what is your favourite sitcom Mum?”

“Lemon flavour.”

Quite content with merely being in one another’s company, we sat in silence for a while, although the silence was frequently punctuated by Mum humming “A Hard Day’s Night” under her breath because we had sang it together earlier and it had obviously lodged itself in her brain in the same way “we need more bacon” and “we need more Innocent smoothie” had in the great bacon and smoothie stockpiling of ’11, when our fridge resembled that of a tin-foil hat wearing conspiracy theorist preparing for a nuclear winter.

Mum and I

Mum and I, February ’16.

After approximately an hour of sitting in the cafe, which included me frequently tapping her tea-cup to implore her to drink it, we decided to call it a day. We walked along the run-down road that leads to the home and arrived back in roughly 10 minutes. Because Mum was in one of those good moods that anyone who has a loved one with Alzheimer’s will recognise as bittersweet, I foolishly tried to capitalise. Rather than depositing Mum back at the home as is my usual modus operandi, be I on my own or with other members of the family, I waddled after her into the home so that I could stuff my cheeks with some quality time.

On return to Mum’s little room she disappeared into the toilet for about ten minutes. I messed around with her CD player which seemed to be intent on playing at whatever volume it so wished. When she came creeping out of the toilet she was muttering under her breath about random things and Karen, another former teacher at the home with whom Mum has bonded.

Earlier on in the day when Mum was stood in the doorway of her room, as I helped put her lavender fleece on, a slightly emaciated hand shot into vision and touched Mum’s shoulder. Mum turned to see where the hand had come from to see Karen stood there, beaming. Mum waved and said “Hello!” and they smiled at each other like two children on their first day of school who have just found someone they know they are going to be friends with. I suppose every time they bump into each other on their little expeditions around the bottom floor of the home they are struck with that breathless excitement that comes from meeting someone you instantly really like for the first time.

“Shall we go through to the living room?” I said.

“OK,” she said, although I really could have said anything. The inexplicable and stealthy turn for the worse had happened.

I ushered her towards the living room with my hand on the small of her back, feeling her stegosaurus-esque spine which once split her swimming costume on a water-slide in Devon, and caught the eye of one of the young care-workers, Kelly.

“I think I’m going to head off,” I said.

“OK,” she replied, “do you want to come over here Jane?”

Mum drifted towards the young woman.

“Bye Mum!” I said, giving her an unreciprocated hug and kissing the top of her head,”Can you let me out?” I then asked  Kelly.

She walked me down the dark corridor and punched in the code. The door swung open and suddenly there was Mum like a pale apparition.

“No Mum, you’re staying here!” I said, smiling.

“Ah OK, am I?”

“Come on Jane,” chimed in Kelly, linking Mum by the arm, “let’s go.”

“Bye Mum!” I said, and the door closed softly. I walked down the stairs, fighting back the slightly tumultuous feeling in my stomach, and reflected on the last two hours. Other than the dicey final ten minutes it had been a success and well worth the journey. I decided that I had been coasting towards a resounding 3-0 victory with 2 minutes remaining but the ‘keeper had switched off and let in a dirty consolation goal from an unnecessary corner. It does mar the victory somewhat but three points are three points and you would have taken it beforehand.

You have to laugh, really, because it is just life, but that doesn’t mean you don’t sometimes feel like howling at the moon: “MUUUMMMMM! Where are you?! Come back!”

*Names changed.

 

 

 

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21 thoughts on “Visiting Mum

  1. Hey, it’s Charlotte/Bellsie here from Warwick (doing a psych PhD, dropped out after going mental), we had a few pints together before we both left.

    You really are a fantastic writer and your piece made me laugh and cry. I’m sorry that life has thrown you that shit curveball but I’m pretty sure that your mum would be proud of your ability to face the situation with stoic humour.

    You’re one of the good ones.. and you are a gifted writer to boot. I have no doubt that one day you will be published and read widely. It’s rare to find someone who can capture the good and carp sides of humanity and make us laugh along the way.

    Keep in touch x

    • Hey Charlotte I remember you very well. You were of “Sex Rats” fame, sorry to hear you dropped out but I hope it was as good decision as me dropping out was. Warwick was shit!

      Thanks a lot for your words of encouragement, what are you doing now? Are you back in France?

      • I’m on “temporary withdrawal” so will be returning to my PhD but from here in France at least initially.

        I have schizo-affective disorder which is like a mix of schizophrenia and bipolar… been sectioned twice in the last year and still attending day hospital. I’ve been really ill, although to be fair I was before Warwick and should never have made the mo ve so quickly (last summer I spent three months in hospital and moved to Warwick four days later…) Very strange as I’m a psychologist and used to being on the other side of the desk…

        Thank you for reminding me about the sex rats… Made me laugh!

      • Ah fuck that sounds really tough but I never would have guessed you had things going on when we met so that’s a credit to you.

        Being in that type of environment must’ve been really bad because it’s pressurised and also very solitary. Not a good combination if you are trying to cope with such serious issues. Psychology is fascinating and if are ever in London then lets go for a drink because we get on really well!

        All the best!

  2. This is a touching piece, Fionn, great humour and attitude as always. I might share with a friend of mine, whose Mum also has Alzheimer’s (although she’s a fair bit older than your mum, so I dunno if it counts as early-onset or not). It can be good to know you’re not the only family going through stuff like this. All the best mate, Raef

    • Thanks Raef! Hope the rest of the MA went well for you? What are you doing now? And please share away! The more who read the merrier 🙂

      Hope you’re all good.

      • Cheers. Dissertation hand-in is Sept 1st, so this is not the most fun of months but it’s going alright, thanks. No clue what the next step will be. Glad to see you’re still writing. 🙂

  3. Lovely piece, thanks so much for posting. Early-onset Alzheimer’s is especially tragic in its own way and it’s so important for people to know that dementia is not just an elderly people’s disease. Thank you for sharing your and your mum’s story.

    • Thank you for commenting! I agree that early-onset flies under the radar and somewhat and glad to help spread the word. Hopefully lots of people will continue the good fight against such a cruel disease.

  4. Simon’s mum here..( Simon sent this to me saying ” read this it’s really moving.) It made me smile , chuckle and cry. You are a gifted writer, and a kind special person , your mum would be proud thank you for sharing 🙂

    • Hi Anna, thank you for the touching comments. From a writer’s selfish point of view I’m glad that I made you cry as it reflects well on the piece! Joking aside, I’m glad you enjoyed it and comments like yours give me motivation to continue writing.

      For the record, your son Simon is also a kind special person and he is a wonderful friend of mine. Hopefully I will meet you soon as Ed and I are planning on visiting Simon this September!

      Thanks again and all the best,

      Fionn

  5. Hi, I just read your blog, mainly because I thought I knew your mum, and I do, she is in the same home as my husband. He has Picks, is 56 and is/was a member of mensa (of which he was so proud). I’m lucky, I live just a few miles away so can visit virtually every other day for an hour or so, we have a 10 year old son, I don’t take him too often, he’s not comfortable in the care home so I try to arrange outings where they can meet up, the local park, costa etc. I love your blog on visiting your mum, but the last sentence “MUUUMMMMM! Where are you?! Come back!” is so poignant, I miss my husband so much even though I see him all the time.

    • Hi Jane, thank you very much for getting in touch. That’s very sad about your husband, particularly for your young son and you. Amazing that your husband was in Mensa, what an incredibly intelligent man! What did he used to do?

      I’m glad you appreciated the blog, it really means a lot. I can totally relate to how you feel about your husband. It’s very cruel because you miss them so much but they are also there physically so the grieving process is very complicated. That’s why I described the good day as “bittersweet” – it’s like a little time warp to when things were better. It’s very strange missing someone profoundly as you stand in front of them or give them a hug.

      I hope the blog helped you feel a little bit better as it is always nicer to know you’re not the only person struggling. I am very sad to hear of your predicament and would love to help you and your son in any way possible.

      All the best,

      Fionn

  6. Fionn, I am very sorry to hear about your Mum it must be so hard for you and your sisters not be able to engage fully with a person who is so sweet , caring and intelligent and full of love for her family-the last time I can recall seeing Jean socially ( rather than in passing) was Christmas Day 1999 when she invited me into your home and treated me like family when I had no where else to go, that’s the type of person she is -very special.
    My own Mother has been mentally ill for more than 35 years and I have never been able to articulate as beautifully as you have the sense of loss, the continuing love and the pain and sorrow which accumulates over time- you are a truly gifted writer, I believe I can look forward to seeing you achieve great things.

    • Hi Brendan, you must be Brendan Nevin? If so, what a blast from the past! How are things? It must be about a decade – perhaps more – since I saw you last? What are you doing now?

      Thank you very much for your kind words. You are right about Mum, she really is a very special person and I love her for the very type of thing you describe, and much more besides that. I think I remember that particular Christmas as me and the girls had all been given these big frog hot-water bottles and I gave it to you/you (drunkenly) asked to hold it for a while, when you were sat on the sofa. Funny times!

      Thanks, too, for the words of encouragement. It is what I want to do so fingers crossed if I read and write every day then something will come of it. Hope you are well and apologies for the delay in replying, I just hadn’t checked my blog in over a month!

      • Hi- yes I’m that Brendan!….I think the hot water bottle request was me gearing up to walk back to Halesowen – it was about -5 if I recall through the haze of time- I hope I didn’t walk off with it!
        Things are good at the moment – my eldest daughter Iona is now 25 and has two kids, Roisin who is just two weeks older than you has last week passed her MA in Social Policy at Birmingham. I got married again and have two young boys, Callum 7 and Rory 4 who are both football nuts and follow Stoke Home and Away with me. I run a consultancy business looking at housing, planning and economy from home-which suits the circumstances- recently spent a couple of years in New Zealand but it was too far away from my girls and the social problems in housing there are overwhelming ( the ruling National Party is close to the US Republicans and the policy frameworks were savage)
        Hope things are as good as they can be for you and your family just now, a rudimentary email search shows that your Sisters have done well also, the Shiner collective is a credit to your Mum and Dad

  7. Hi Fionn, I sort of stumbled across your blog as I was looking at something else on the internet, and as it happens I know your mother!
    Despite the early onset Alzheimer’s your mother continues to sing with the little choir that she’s been a part of for a few years. I also sing with that choir, I joined almost four years ago when your mother was already a long time member. I never really got to know her until I began to give a mutual fellow singer who is a friend a lift on my way to choir practice and she asked if we could collect your mother from her house opposite the park where she lived at that time.
    I didn’t fully realise that there was any issue regarding your mother for some time, she’s obviously a very intelligent lady and as she sat in the back passenger seat of the car she would add to the general conversation in her nice sweet way.
    You don’t need me to tell you that over a relatively short space of time things deteriorated somewhat to the point where it wasn’t really safe for your mother to live at home, so she moved to the care home that you’ve written about.
    The home is some distance from where she was before, so it looked as though your mother’s weekly social interaction with her friends of long standing were going to end.
    Because I’m the only singer from that choir who comes from the Black Country, (the others are all proper Brummies) and I live about 5 miles up the road from the care home I decided to detour ever so slightly to give your mother a lift to and from the choir, so that in consultation with the experts at the care home she can continue for as long as possible to take part in something that she seems to really enjoy, something that she still knows and which hopefully does her good.
    My Fiancées brother suffered from vascular dementia, a particularly aggressive form of this condition, so from my experience with him anything that can restore a slight bit of reassuring familiarity is a win, and this seems to work ok with your mother.
    She recognises me, sometimes she’s happy, sometimes (but not often) she’s not so happy but I think that the singing helps her and at least it allows a break from the care home environment, and she’s usually fairly buoyant on our return journey.
    With my fairly strong Black Country accent your mother may have had some slight difficulty in understanding my speech patterns at the best of times, so to overcome the conversational block I download 1960s / 70s pop songs from the internet onto CDs (don’t tell anybody though) and we sing along to Tamla Motown or The Beatles at the tops of our voices as we pootle along toward Birmingham, often surprising cyclists as we tunefully implore them to ‘Stop in the Name of Love’ or plead with Mr Postman to ‘deliver the let-ter, the sooner the bet-ter’.
    Your mother knows every word of these songs, there must be a spot inside her mind untouched by any problems and she seems to enjoy our mobile singalongs almost as much as she enjoys going to the choir to see her friends.
    She does love and remember you, she mentions you by name Fionn, so if you have spare time, go along whenever you can and if you haven’t got access to a car stereo try to find a cafe with a jukebox. (your mother likes drinking chocolate) You’ll be able to really connect via her deeply ingrained love of music and the music never fails to make her happy.
    All the best
    Steve

  8. HI Fionn,
    Hope you are well. Only just come across your blog. Its a really powerful and moving piece – and so rare to get a young person’s perspective on the condition.. I wonder if you might be interested in doing something on video for the BBC? Could you drop me an email to discuss?
    Thanks
    Richard

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