The Heart Failure Diaries (Endings and Beginnings)

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Last Saturday my mum realised she’s going to die – soon. We don’t know how soon but soon enough we think. It’s a strange space to be in, this one of anticipatory grief and loss. The knowledge blows around you – sometimes gently reminding you to really appreciate a moment; others catching you with a strong gust causing you to lose emotional balance. It makes everything intense. I have an urge to write. I realised as I started to write this diary of the end and what’s coming, my mind was swirling with memories. So I’ll start the end mixed up with the beginning – my earliest memories of me and my mum.

 My earliest memories are hazy. Riding my tricycle up and down on the path between the house and the farmyard – I know my mum is there with me or in the kitchen nearby. Watch with Mother, a daily ritual which she would leave me to watch alone- sneaking off to get lunch ready. The Clangers would have me transfixed. It’s strange that my 3 older brothers and sisters are mostly not there, I just recall me and mum. I do remember being with my brother T at playgroup in the village hall when a heavily pregnant mum came to collect us. We pretended to hide from her but not for long; running and hugging her warm belly all laughing together at the game. Fragments and images but they are all of the same emotional hue. Warm and safe.

I didn’t always have these memories. When I held my first daughter E as a baby, I experienced a sense of calm and inner peace that told me I too had been held this way. It was both a revelation and a comfort for me. The bad stuff meant I’d forgotten the good. I was distant from my mum by then; seeing each other but disconnected emotionally. It had been like that for years. Becoming a mother myself began the healing process and these early memories came back. The playgroup memory I would have been about 2 and 1/2, my youngest brother born not long after. He was sick and him and mum went away for a few months. My warm and safe memories stop there too. The next thing I remember is moving house when I was 4 years old.

Last Sunday me and mum took the new portable mobility scooter (christened the flying batmobile by mum) out for it’s first adventure. Inevitable issues for me folding and unfolding produced much hilarity from her. We managed it and off we went in the faint sunshine with it’s promise of Spring. I wondered if we would talk more or if we might lapse back into denial. Anyone who knows alcoholics will know that denial is something we do very well. These open honest conversations are new territory for us together – I wasn’t sure either of us would be able to stay in it.

She surprised me by announcing she felt better now she understood, and she was doing a bucket list! This mostly consists of me taking her to visit people! She is worried what will happen to her cat. My daughter E has promised to have him but her boyfriend is not a cat lover so she’s worried he will block it. ‘He loves her though so it will be fine’ I said, and we discussed the practicalities. We talked of the past some through the day; her childhood, some of her marriage to my Dad, and later on about my children and how my drinking effected them. We never really talk about my childhood and her drinking together – it’s like I was always a grown up. The shame she feels is too much for her to bear so has to be tiptoed round. We did and often do talk of the gift of the last 12 years since she’s lived near me. The fun, the laughter and the memories – made possible and better by her getting sober and then me. I hope that the gift of this period in our lives will be that nothing is left unsaid between us.

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Welcome to My New Sobriety Blog

Be yourself; Everyone else is already taken.

Oscar Wilde

I’m quite new to my relative sobriety, finding my way in a world where I’m used to being the helper not the helped. I’m thinking there might be other people out there like me, scared to come out because of their professions so if I reach you and you feel less alone then I’ve helped us both.

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The Heart Failure Diaries 6 – a different space

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Thank you all for your lovely comments on my last post. It was like catching up with an old friend and realising you miss them. I’m back at mum’s tonight for my third night. When I came back on Monday evening as my sister was leaving my mum was a touch irritable; moaning about being ill and then about my sister after she left. ‘I know she means well but she fusses so’. Sure signs that she was starting to feel better!
The cough persists though, and progress is still slow. There are comedic moments too. When Mum takes her hearing aids out to sleep she can’t hear a thing, so I tried to sign what I meant. She later did the same to me when she got up for the loo ‘I can actually hear you’ I said but of course she couldn’t hear me! Late Monday night I realised I’d not heard her cough for about 20 minutes. I shuffled in my sleeping bag into the hall and listened. After a few seconds I heard her breathing and went back to try and sleep.

Tuesday I managed to talk to our GP (family doctor in UK); and get antibiotics and a mild sleeping tablet. They are definitely helping as mum has eaten today for the first time since Friday. ‘No food for 6 days and I’m still the same weight!’ she exclaimed this evening – definitely on the mend!

I feel fairly sure she will get through this one now. What this feels like is a preview, a taster of what is to come. This week I have been in a different time and space from normal life. Very little else has been done because when I have the time I want to be quiet, to rest and let my feelings be there. I’ve seen a few patients but cancelled most. I spent extra time with Puff my horse yesterday before our lesson. I lay down with my head on some hay and he munched next to me, sniffing and nuzzling me between mouthfuls. It was very calming. I’m doing things at strange times – a bath in the afternoon, some work at 6am, but mostly it’s all just time between being with mum. I can’t think about much else except when actively doing something but mostly I don’t want to. My niece and daughters are in the same space, so we message a lot as well as my siblings. All of that is intense but needed.
I had a cuppa with a good friend today. She lost both her parents and brother in a very short time several years ago. She talked about this different space too, where the rest of the world goes on, as you go through this intense experience together, preparing for what’s to come. This is so so ordinary, so human, so family and yet so individual all at the same time. It’s strange how death’s shadow makes you notice and appreciate life so much. Thanks for reading my friends 💕💕

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The Heart Failure Diaries 5 (a new phase?)

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I’m sat in my mum’s flat this evening as I’m staying over for the first time, listening to her cough as she tries to sleep. She’s not well again and although she rebuffed me last night, insisting she would be fine; she had a bad night and was frightened. Today she was quick to agree it would help.

Mum rallied from her last illness, and I consciously decided I wasn’t going to stay in death’s waiting room and put all thoughts about it away. I noticed Mum didn’t though. When I told her about theatre tickets in Stratford in May she said seriously ‘Do you think I’ll still be here?’
Christmas was lovely. Mum seemed super well on the day, so we could all relax. Given last years ‘Covid Christmas’ set a low bar, there was much to appreciate and enjoy this year.
Just two weeks into the New Year though and mum’s health is foremost in my mind. Is it just a virus or worsening heart failure? Should she see a doctor? Can we get home oxygen? We agreed that A&E is not an option after last time so I said next time she was bad I’d stay over and here I am. Anyone in the UK will know that hospitals can’t respond to the sickest patients anymore so the chances of any benefit for someone like mum are very small. I will hold her hand, make her as comfortable as I can and what will be will be. I don’t think this is the time, but the first of who knows how many times standing on the precipice before the inevitable.

A really lovely thing we have started is recording conversations where I ask Mum about her life and childhood. Mum is keen to get on with it, which makes me think she thinks she’s not long left. Mum was a little anxious and reticent the first time, holding some stuff back until the recorder was off. The next time she performed for the potential audience; flamboyant flourishes meaning you can never be sure what she’s saying is true!

For me I think the desire to do this is complicated. My first idea was to help my mum reflect and accept her life, and hopefully lose her shame that I know runs deep. I watched a film, Snr, (Netflix) after we started, whereby Robert Downey Jnr films himself with his father to make a documentary about him. It’s fascinating and clear Jnr wants his father to talk about when he was small (where he was clearly neglected whilst the intoxicated adults made films). His father’s only comment was ‘I don’t want to be around for that conversation’ and he wasn’t. It didn’t happen. I realise I’m maybe hoping for something similar but need to be ok with not getting it. My mum rarely references our childhood, though frequently does her own, except to say ‘I had a nervous breakdown’ or similar, always the adult perspective. However yesterday when I came to see her she got to talking about my younger brother being a really sick baby, as he had Rhesus disease. (We seem to be having deeper conversations a lot of the time since we did the first tapes). ‘I think it was hard for you as he took all the attention’ she said. As I drove home I felt emotional. Not only from the sense of loss creeping up on me again, but also from that acknowledgement. Being seen, even 55 years later, was a profound moment.

So these are bitter sweet times full of love, loss, emotional and spiritual growth – I hope for the both of us.

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Autumn Pause

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I write nothing for nearly 4 months then 2 posts in 2 days! Part of why I hadn’t been writing was I started my Equine Assisted Therapy training in July. I had deferred it due to mum’s health but her improvement and encouragement from a friend that I shouldn’t put my life on hold meant I contacted them to see if I could join and I could! It is fascinating, exciting and resonates with everything I’ve ever thought about animals, their sentience, wisdom and value. I stopped eating much meat as a result. I also found that practicing the body based awareness brought up feelings and experiences that I thought I’d left behind me. My desire to be a good student, to perform and impress led to a meltdown when I thought I’d lost an online assignment. Between the course, work, the horse and family I was very busy but felt fulfilled and on the right path. I was excited and nervous about the first in person horsemanship experience. Worried my failings would be exposed as you can’t fool the horses; and again the need to impress. Then I got Covid and couldn’t go. That was about a month ago. Missing this put everything else in doubt.

Since then I’ve ground to a halt. Mum was ill and then C again, and now me again. I haven’t read anything, I’ve not ridden much, and I’ve smoked more cannabis. I’ve done very little yoga, and no meditation. It’s like a switch was flicked and I’m back in my old patterns with the accompanying sense of “is this all there is to life?”. I can resume in the Spring with the new cohort but I’m nervous about it now. What if mum is sick or dying? Which horses shall I use for practice? It all seems too complicated and my initial enthusiasm has gone.

Writing this now I can see that the performance anxiety is about ego, and the fear of not being good enough or exposed as such. The horses have no ego so they won’t care. They care about authenticity. Also that the cannabis pulls me back into this inertia. I was heartened to learn from my reading that the ancient horse women of Europe used cannabis as their drug of choice, putting it on the coals of their saunas – effectively hotboxing! Perhaps they’re my ancestors! I use it habitually though, and that’s what I want to change but right now that seems too hard. When I was busier it took up less time and space but addiction jumps on every opportunity it can and here I am again in the half-way house.

I know I won’t go back to alcohol though. Two friends got married this month and my best friend B came to visit so I’ve been more social between bouts of illness. Both weddings were 2nd time around and both love matches. The first was not a boozy affair and my friend had got plenty of AF options in. I really enjoyed it but we left early. My social battery (to borrow a young persons phrase!) is really not very strong and I’d had enough of talking. As me and C walked back to where we were staying under the stars I remembered that as a child I would take myself off with the animals, away from the busy house full of people. I only became an extrovert when I discovered alcohol.
The second wedding was awash with alcohol and other substances – much like both of mine were! The one bottle of AF Prosecco got lost so I had a glass of champagne in front of me for the toast. I reasoned that a few sips or even the whole glass in this context would be ok. When we toasted the happy couple I took a sip. It was vile! I passed it to my friend. As the evening went on I danced a bit but felt again as I did as a child; on the outside looking in. Now I know what it’s like to be them whereas back then it was all mysterious and incomprehensible to me. I left early again.
Whilst part of me is wistful that I’m not that party girl anymore; mostly it all seems very shallow and meaningless to me. I read somewhere today that when you embark on a spiritual awakening you can be perceived as boring and lose friends. Boy does that ring true! I try really hard not to be judgemental but I know if those friends read this they would feel judged. I feel similarly about conversations about new cars, new kitchens etc. No wonder my social life is minimal these days!
Thankfully B’s visit was not the same. We saw The Unthanks which was wonderful, ate nice food and she came to meet Puff – something most of my friends have never done. We laughed and talked about all sorts and the feelings I describe above were not there at all. She knew me as a child though we only became close in our teens but I wonder if that’s why we have a more authentic connection? Time with B is always a tonic and I’m so grateful to have her as a friend.

I’m sure I’m not the only introverted person who’s obscured their true nature with alcohol over the years. That little girl who prefers animal company over human is beginning to come out of the shadows. Perhaps she can finally grow up now.

Charles Bukowski – image from https://bekitschig.blog/2019/07/08/who-were-you/

The Heart Failure Diaries 4 (anticipating loss once again)

It’s been 4 months or so since I last wrote here about mum or anything else. I’ll tell about other things in another post. We had a really good summer with mum. She was relatively well in herself and 2 of my nephews who live overseas visited with their partners so she got to meet her great granddaughter as well as a visit from another nephew and his baby son. We went to Scotland and saw the other two great grandchildren; and had a lovely birthday party for her. Thoughts of death and dying receded. Then early October she was sick. I had Covid at the same time and there was a part of me that thought she was being dramatic, as I’d been away the weekend before and she doesn’t like it when I’m not available. Once I tested negative I went round. She looked terrible. Coughing relentlessly, grey in colour and breathless. I ordered a pulse oximeter and took it round the next day. Her sats were 90 at rest so I text the GP asking when I should worry. He called me straight back saying call an ambulance. Mum was stony faced. “I’m not going” she asserted. “You have to” I insisted, “you need checking out and the doctors can’t do it”. I rang the ambulance but they said we didn’t qualify for one so after promising I wouldn’t leave her there we went to hospital.

A&E was busy but not crazy and we got triaged relatively quickly. Her sats were up to 95 by then. My back was bad so pushing my mum in the wheelchair was difficult. I left mum and got us food, and then spent ages trying to get a phone charger out of a machine as I was on 1%. I’d managed to cancel my clients but not the room bookings. I’m not good at waiting and neither is mum. After a couple of frustrating hours or so mum said “Let’s go – I’m not going to stay so what’s the point?’ We went home, I settled her and insisted she was to call me if her oxygen dropped below 90. She text me later to say she’d had a shower and it was 76 but then said she thought she’d read it upside down! Our GP was very understanding and said he would see her and check bloods in the morning. He’d had a woman drop down dead in the surgery the day before with sats of 88 so was understandably freaked out by my text.

During this episode was the first time I’ve seen real fear in my mum’s eyes. It’s also the first time she’s talked of giving up and not wanting to go on like this. For my part it’s also the first time I’ve acknowledged the strain by telling my siblings. Being under the weather myself and in pain from my back; cancelling work when I need the money and visiting every day as the person who helps her decided to go away in the middle of this all played a part but mostly it was the sense of being back in death’s waiting room. The uncertainty, the not knowing what, how or when it will come. Mum has slowly recovered but it’s left her even less able to do things. We wouldn’t contemplate going out without the scooter or wheelchair now. I’m hoping we can get home oxygen sorted soon so we don’t need to go to hospital next time she’s ill. We talked about this and I was clear that by not going in she may well die sooner than if she did but she was very clear “I’m 84 – I don’t want to die in hospital”.

So although things are settled now I’m anticipating a tough Winter ahead. I wish I had stayed with her when I realised how unwell she was but I think I only half let myself register it at the time. Can we ever see our parents as they are? I didn’t want to fully register her fear or neediness. I’ve promised myself that next time I will as I don’t want her to be frightened and alone. I hope it doesn’t come around too quickly though.

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The Heart Failure Diaries 3 (Doctors score a late goal!)

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Since my last post about Mum and her failing heart we have had the Echo results and the review with the consultant. Her Echo showed her heart is working at a quarter of its function at best, sometimes less. The day before the appointment Mum had one of her worst days, breathless at rest. We went to the appointment with the wheelchair whereas the month before she had walked in to the Department. I was expecting the consultant to confirm the inevitable.

He sat in silence looking at the notes for a long time then began to ask questions. ”how are you managing at home?” “Fine” mum replied. ”No you’re not!” I interjected, explaining that mum needs help with everything except personal care. I said we understood what was going on, and wanted to prepare. The consultant wouldn’t acknowledge or admit that this was the end game, sharing miracle stories of patients who have long outlived their prognosis and stating he would ”throw the kitchen sink at this”. Once he remembered I was medical he conceded that Mum’s low blood pressure was the limiting factor for further intervention. We left with drug changes planned, an early follow up, a suggestion we discuss all of it with the GP and confusion. ”I guess he’s not going to tell you there’s nothing he can do at the first meeting in 3 years” I said to mum on the way home, “but the conversation has started. Doctors like to fix people, they don’t like failing”.
I emailed our wonderful GP and he rang me later that week. He too seemed reluctant to accept how poorly mum is but explained the new drug rationale and said he would talk to mum about end of life care and her wishes once we saw how she was with the new drug. She’s very clear she doesn’t want to go to hospital at any point so I want to be sure we can have oxygen at home when we need it.

As no one else seems to think we are nearing the end, thoughts of death and loss have receded and life goes on. I’ve been more focused at work, busy with the horse and seeing Mum more than I would have. I’ve realised that you just can’t plan for death. Neither people nor services work like that. It will catch us out and shock us however prepared we try to be. Best to forget about it until such time as you can’t or it paralyses you too soon.

Mum started the new meds and to her and my surprise they have really helped. She’s not as tired or breathless. She can go out on her scooter and not need to rest all day afterwards. It’s buying her some time and giving her some energy too. We are both surprised and delighted! It’s as if death was looming in front of her and she’s kicked it into the long grass again, off the horizon. When it next confronts her no one will believe me! She’s fairly sure she won’t be here for a grandson’s wedding next September but who knows? Perhaps the doctors are right to be optimistic? I was frustrated by his reluctance to discuss the end or give us predictions, but I really thought that medical options had been exhausted. Who knew he had an ace up his sleeve? Of course her heart is still knackered but more medication tweaks are on there way and given where we were just a month ago this extra time is a precious gift.

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Mothers and Daughters

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I was floating along in such a happy space when I last wrote it’s not surprising something burst my bubble. More specifically my mum did. We had a birthday tea for C with mum and J, my youngest. Lots of banter and fun, then J mentioned a story granny had told her – the time C had taken her to a hospital appointment because I’d ’been drunk in bed in the afternoon’.

This appointment was several years ago when I wasn’t self employed. I remember not going but not the exact reasons. My sister was here so went with her, and I think that I was at work and it was too difficult to not be so I figured my sister could sub. I am pretty certain I was not drunk mid week as that wasn’t what I did even in my worst days. C had got lost causing mum and sister anxst, and the junior doctor discharged my mum. She has often said that wouldn’t have happened if I was there.

I expressed my disbelief and explained the above. My mum looked sheepish whilst J said “What about Mondays – you didn’t work then?” “I wouldn’t have been drinking in the afternoon on a Monday” I asserted, more hurt by this than my mum in some ways, adding to mum ”You’re casting aspersions on my character”. The conversation moved on.

My mum has always done this sort of thing whenever she feels let down, neglected or ignored by someone. I‘d been away a few weekends in May. She spins a yarn with a grain or two of truth in it and makes them look bad; involving others in her web of lies, half-truths and drama. She was much worse when she was drinking and when I was younger I managed it by being distant – literally and figuratively. Since we’ve been closer if she tells me something along these lines about someone else I usually say a firm ”I find that very hard to believe”. There have been times we have not believed her when it’s been true – like when our cat went missing whilst we were on holiday and she was taking care of her when she first moved nearby years ago. We thought she was creating a drama and thought no more of it until we got home to no cat!

I spent the weekend at my eldest daughter’s E helping her sort her garden. I told her about it and she laughed saying ”you have to let her have her little dramas”. Both my girls know about this side of granny and it doesn’t bother them or change their love for her. ”She was the one drunk in bed in the afternoon” I exclaimed. ”Total projection then” E said and again we moved on.

When I arrived home the next day after a difficult longer drive than I’d hoped I flipped out at C over something trivial, didn’t do any of the things I intended to and sulked in bed. As we processed together I remembered me coming home often followed this pattern in my first marriage. I’d be happy and excited then something trivial would flip a switch and I’d be angry or upset. As a child coming home was fraught with anxiety as we never knew which mum we would find. Clean house and tea cooking, in bed drunk or worse sat at the kitchen table with her friend, almost empty bottle of gin and breakfast plates unwashed in the sink, the scenario that would often lead to a violent row with my Dad. As we talked and again the next day with my therapist, I expressed my anger towards my mum, both past and present. She is the one person I love that I never get angry with directly. Others have often received my anger towards her unfairly. I felt something shift and my emotional baggage lighten.

When I next saw my mum it was her cardiology appointment (I’ll tell about that in another post). I was over it and fine with her; able to support her without irritation and able to see her vulnerability and love alongside her occasional spite. I also realised that part of what hurt was that although this wasn’t true in itself; the reason J believed it was because her experience of me was often that I was emotionally unavailable through drink. I have been on both sides of this parental addiction coin and neither one is any fun.

Since then I’ve been away for a few days with E to Barcelona. I arrived first and wanted a cig and a drink when I got to the hotel. There was a minibar and I decided a beer would be ok. I couldn’t find an opener though so went down to the bar and ordered an AF one. The next day I saw the opener in the fridge but was glad I’d not found it. We had a really relaxed lovely 2 days; we talked a lot about past, present and future. I’d seen J recently and had a similar experience of openness and sharing with me.

My girls are both growing and changing as young adults do; and have both softened into themselves, and are more at ease with themselves – their bodies, jobs and their relationships. They’re lovely young women inside and out. I think some of this change is due to the changes in me. As I’ve become more reliable and consistent emotionally they are more secure in their attachment to me which means they can be with others too. I realised if I had had that one beer it could have changed the dynamic of our trip, not necessarily because I’d have been drinking (though of course it could easily have led to more), but because it would have brought anxiety back for E, maybe some anger towards me too. Is a drink worth risking my relationship with the 2 people I love most in the world? My drinking like my mum’s caused problems where it matters most. I’m still processing my childhood as I chose numbing and alcohol for many years. I am hopeful that my girls won’t need to and that alone is reason enough not to have that one drink.

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Sobriety Update

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Since my last post I’ve been busy living. Lots of work, some weekends away and I threw caution to the wind and bought a new horse! He’s an ex racer who’s had his basic retraining, and is very sweet natured. Hilariously he’s called Puff. Part of my thinking around getting him was that I would give up smoking ’puff’ in order to free up time especially given my mum’s health and needs. I’ve had him a couple of weeks now and have felt happier in myself than I have for a long time – probably since I retired my last horse in 2017. Looking back I think that was a catalyst for my drinking becoming increasingly problematic, the loss and more time to fill; followed by stopping alcohol, getting depressed and increasing my cannabis use to compensate. The pandemic allowed this to flourish and I withdrew more socially. Cannabis has been my default choice to fill my spare time for the last couple of years. Like alcohol it became less enjoyable as it became more compulsive. As I write this I have been cannabis free for a week.

It’s not all been positive. I’ve been grumpy with C, the return of the smoke devil! I’ve found myself thinking about drinking again. Could I have a glass of wine now and then? The idea of no mind altering substances to smooth the rough edges of life is difficult, especially as loss and grief are ever present currently. One day at a time is a helpful mantra to deal with this. Each time I’ve come close I’ve been glad that I’ve not succumbed. I’m feeling my feelings more with down days and ridiculously cheerful days. Im also getting more joint pain from my arthritis. I think I need to get some CBD supplements to address this.

The positives are I’m waking up earlier and getting more done. Things I want to do like riding and writing. I have more motivation to do other things, especially socially and like giving up alcohol, it’s liberating to not be thinking about when and how I’m going to smoke in any situation.

I’m not sure this is permanent. At the moment my thinking is that I might have it occasionally. I’m seeing this as changing my relationship with it – from best buddy and daily companion to a casual acquaintance. The therapy has definitely resolved some of the underlying issues that led to my addictions. I know old habits die hard though and I may be kidding myself. Hopefully having the new Puff in my life will mean there just isn’t the time and space for the old one!

The Heart Failure Diaries 2: (making memories)

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When I hear the song Memories by Barbara Striesand I think of my mum. This week I’ve been reliving my horse memories, as we’ve made the sad decision to retire the little horse. Too many issues with uncertain outcomes. I read of the horrors in Ukraine, the losses so many are having to bear and I know how lucky I am to be me right now. I’m not having a pity party, but I am allowing myself to be sad. I can’t remember the last time I rode her as I didn’t know it was the last time – we hoped she would recover with her time off. I think of mother’s not knowing the kiss and wave goodbye to their children isn’t the last, and all the last times people missed in the pandemic. My heart is overwhelmed with the suffering in the world.

With mum we are in a strange knowing but not knowing place. My siblings have been visiting. It’s reassuring they see what I see and we are of similar mind sets. Her optician looked in her eyes and said “You’re not well are you?” ”It’s bucket list time” she replied and made a joke about what she was getting me to do! Ever stoical to the outside world. Her echo is soon and then we will hopefully get a prognosis. Of course the doctors can’t tell us what we really want to know which is how long? Do we get another birthday? Christmas? We don’t get to schedule death and loss even if we can see it coming. What we do get to do is savour every moment, to notice them and make an effort to remember them. It’s intense living this way but we’re making memories to sustain us in the future.

Ive been scatty at work these last 2 weeks – forgetting things and feeling chaotic. I’m off for a few days now and this morning the tears came. “I don’t want my mum to die” I sobbed, the dam bursting as I have a day to myself so I have space to be sad. Tomorrow my eldest E comes for Easter, her boyfriend is coming too on Sunday for a family get together. Mum will be so happy she got to meet him. I’ll need to smile, be strong and be the reassuring grown up. We’ll have fun but we will all be wondering if it’s the last time we will be together like that. We don’t know but if it is we will have the memories.

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Light the corners of my mind
Misty watercolor memories
Of the way we were

Scattered pictures
Of the smiles we left behind
Smiles we gave to one another
For the way we were

Can it be that it was all so simple then?
Or has time re-written every line?
If we had the chance to do it all again
Tell me, would we?
Could we?

May be beautiful and yet
What’s too painful to remember
We simply to choose to forget

So it’s the laughter
We will remember
Whenever we remember
The way we were
The way we were” by Alan & Marilyn Bergman & Marvin Hamlisch

An Honest Conversation

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My mum has not been too good lately. She has had heart failure for many years, caused by excess alcohol damaging her heart muscle. Since Christmas she has been increasingly short of breath and sometimes breathless at rest. She’s cancelled things, talked about viruses, needing to shake it off and the like. I’ve gently suggested it might be her heart – often to be met with dramatic statements such as ’You may as well shoot me now then!’ Her doctor has done bloods and we are waiting an Echocardiogram and review by the specialist. I persuaded my brother – (the one with money!) to buy her a portable mobility scooter so we can go places. I called in to see her yesterday to plan our first outing.

Mum was looking a little better but still has the greyish pallor of someone lacking oxygen. We chatted and had a laugh as we always do. Then she got serious. She had spoken to the warden of her housing to let her know she wasn’t well. She wanted to ensure there was a ‘do not resuscitate’ (DNR) in place. ”I’m not coping well with this” she explained, ”I know I wouldn’t cope if I was paralysed or something and I don’t want to put that on you all”. I agreed with her – honesty had replaced the dramatic statements. She then showed me the letter from Cardiology. “What’s that mean – BNP 1899?” she asked. “I think that’s a heart failure marker I said – let me look it up to be sure”. Medicine has changed a lot since I trained and I use Dr Google as much as the next person! My first search immediately revealed that high BNP is a prognostic marker, normal is 100. The latter fact was out of my mouth before I could self censor and I watched the penny drop for my mum; the one that had dropped for me a while ago – we are nearing the end.
“So what happens now?” mum asked. “We need to hear this from the consultant” I said, “then we ask if there’s anything medical they can do; then we ask them what’s likely to happen and how long it will take. When your heart can’t pump well enough your other organs will start to fail. So far your kidneys are holding up so that’s a good sign. It’s thinking what you want to do, and planning those things whilst we can”.

When I left Mum was joking again, but I felt bad leaving her to digest this uncomfortable truth. I’m glad I’m seeing her today. I’ve cried a little, and wondered just what the next months will hold. I know I can both sweep away worries and magnify them in my mind. I think I’m more balanced though with this. I’m not going to make any big plans; just be here, be present and available and make the most of the time we have day by day. I know I’m lucky to have had my mum so long, and blessed that she came back to us from alcohol – the thief that steals love slowly and surely once it gets hold of you. Today we will visit some gardens and try out the scooter. We will laugh and have fun and I will make precious memories.

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