This is hard to write. The last year has been difficult; that hardly describes it but, sometimes, even for a wordsmith, words let me down. There are, yet, my trusty ‘go to’ place when times threaten to consume my mind, body and emotions; at least, I thought they were. This past year I have had many words circumnavigating my brain but they have been floating, random, disjointed words that form no sense, let alone a sentence. Let me take you back to May 2015.
Jean is a woman I greatly admire; strong, fair, lacking in unnecessary ‘fluff’, yet loving and generous to a fault. She is also my aunt. In May 2015, we heard she had been taken into hospital. She lives in Scotland; we, her family, all live in England. Not close in distance though very close in connection. I went up to visit as soon as possible, by which time she had been taken to ‘rehab’ with a view of returning to her home; a small flat she had lived in, in the centre of Aberdeen, for more than 40 years. She had shared this home with her sister, Myra, who died 10 years ago and sister, Betty, who had moved into a residential home some 4 years ago. Betty had, by this time, advanced dementia and Jean, her elder by 3 years, had been no longer able to care for her at home. To summarise the story, Jean had begun to struggle at home, had the pride to wish to ‘cover’ this; had, no doubt, the fear of how she would manage. She had stopped going out, stopped caring for herself and, significantly, stopped taking her thyroid medication, resulting in collapse and admission to hospital. Visiting her in ‘rehab’ was, for me, like a stone being flung violently through my heart. On the last day of my visit, walking away from her down grim corridors, my tears echoed as if bouncing from empty walls with nothing to offer; hard and cold. I had stoically remained on the ward, holding onto Jean’s need rather than my own, as I waited for staff to bring her a cup of tea; staff who kept telling her she must drink, staff who didn’t appear to understand an elderly woman who would rather be dehydrated than drink water but loved a good cup of tea. It took 2 hours before the magic brew arrived and I then stayed to prompt her to drink. Jean is 4 foot nothing, she was sitting in a chair that left her short legs swinging (not great if your legs are swollen and sore) and her ‘table’ came to her chin. She couldn’t see the top of her cup, never mind whether there was any liquid within.
Move forward to August 2015 and ‘rehab’ decide Jean is not fit to go home; she hasn’t improved and the Social Worker has decided she will go into residential care. Happily, mainly due to lack of other suitable provision and the will from the home she moved to, Jean went to the same home as her sister, Betty. Here, she knew and trusted the staff; they knew and liked her and, even more important, wanted her. She was weak, tired, probably depressed and near giving up, and we hardly expected her to last 2 weeks. As I write this, in June 2016, Jean is still with us, back on her feet, mainly happy and getting the most from life. She is an inspiration.
Back to October 2015 and a call from the care home in Aberdeen. With all the calls about Jean, seeing that caller ID stole my breath each time (I was by now the main contact – that story follows) but, no, it was about Betty who had suddenly deteriorated with an infection and wasn’t expected to live long. Remember, remember the 5th of November; this is the day that Betty died. We, her family, were shocked, no other way to put it. We had all been awaiting the worst news about Jean, not really worrying about dear Betty, who had been so well. People use cliches like, ‘the rug being pulled from under you’; cliche it may be and yet so true. I don’t think any of us really knew what to feel, what to think, what to say. We embarked on the journey to Aberdeen from our own little parts of England, converging like lost waifs wondering what we were doing. ‘Muddling through’ is another of those sayings that comes to mind; it did feel a muddle, though with warming moments like a rainbow suddenly bursting through a rain cloud. Jean provided most of those, taking the lead as elder of the family, now nearly 90; our matriarch, our inspiration, even though so frail and looking smaller than ever. If Jean could do that, we all had to follow, to summon any small amount of strength and courage within.
Home, drifting on, life. Planning next trips to see Jean; once before Christmas and then, for us all (mum, dad – Jean’s younger brother – sister and brother in law) to visit for Jean’s 90th birthday in early January 2016. The planning was a process of divining hope, I suppose. Even as I think of what is coming through my fingers to the screen, the words I am now forming, I feel taken over with emotion; it courses my blood, it drops stone-like deep into my stomach and pushes tears against my eyes, it is everywhere.
December 9th 2015, an innocent enough day, yet one of very few days I can remember since having a mobile phone, leaving it sitting on the kitchen table on going out that morning. I wasn’t out late, visiting a friend and helping him sort out some of his cupboards in preparation to move home; chatting, reasonably light, normal even. The phone drew me as I entered the kitchen, as if ablaze and urgent. 5 missed calls, 5 messages; my sister. Dad had had a stroke; 2 strokes. Major ones. The distress palpable in her tone. Mum had been at the hospital but had left. Where was she? Had she gone home? Was she safe? Mum has dementia – at this point undiagnosed. I called my sister, hands shaking, everything trembling, hardly hearing words, struggling to make sense – of anything. Mum was home; that was one thing. Dad not good. “I’m on my way”; what else is there to say. Off the phone, I wail, yet it’s like someone else is wailing; I am not in my own body. 5.30pm, rush hour, M1, heartbeat like a series of gunshots and cannons firing without any sense of rhythm. 5.45pm, the car is over-revving, fumes are clouding behind. Stop. No hard shoulder. Traffic works. Have to stop anyway. Terrified. Can’t get out of the car. The shaking has taken on a whole new form. Is this what imploding means? Phoning breakdown service I must sound disconnected, ranting. Fire Fighters appear at my window; they look unnaturally large, yet, somehow, gentle. Can I get out of the car? “No”. They create a ‘barrier’ with traffic cones; this seems to happen in super-slow motion and I feel as if I am watching from above or far away, disassociated. I can see lorries tumbling past me, hear voices encouraging me, asking if I am ok. All I can say is, “no”. I never say I am not ok; far too British. The car is not repairable at the roadside. I am taken to the ‘garage of my choice’; choice seems a weirdly stupid word at this juncture. They can’t take the car themselves as the garage is closed so I have to ‘accompany’ them; I wonder why they think I am fit to accompany anyone or anything? It’s 9pm; I am cold and disoriented waiting for a friend to take me home. I can’t get to my dad. I can’t get to my dad and he has had a stroke. Texts, phone calls maybe, I don’t remember which, to my sister. Trying to reassure each other but both terrified. She will go and stay with mum. Frantic phone call to my daughter asking if I can borrow her car? (This is the only car I can drive as mine is adapted to drive left footed – that’s another story – and her car used to belong to me, so it has the same adaption). Feels like some kind of surreal role reversal; “Can I borrow the car, please?”
My memory of the next few days is like trying to watch a film through scrunched up cling film; hazy, incomprehensible. Phone calls to and from my sister, text, email. Phone calls to and from the garage; still no hope of my car being repaired. Phone calls in the middle of the night; dad’s blood pressure has dropped dramatically but no need to rush to the hospital. What does that mean? Being told he has 5 days. Speaking to our children (grown up). Telling my daughter to visit if she wants to see Grandad – it could be the last time. Driving up and down the M1 to the hospital, fearful each time; fear building like a morbid orchestral crescendo. Clinging to each other like children far out at sea grasping onto twigs and hoping, hoping. Tears. Mum confused; remembering, forgetting, having to go through ‘the story’ over and over. Her not understanding why he has had a stroke. Us not comprehending either. A man of 84, fit, healthy, playing golf weekly, walking daily, not a smoker, not a drinker, healthy eater; not in any kind of risk category. Realising the extent of mum’s dementia (well covered up by dad – more pride?) Knowing we can’t leave her alone. Seeing food go in and out of the fridge and freezer, to the oven sometimes – all disjointed and with the potential for food poisoning. Watching her confusion, her anxiety rise like a helium balloon taking off wildly in a gale, her inability to manage daily tasks without support. Making a ‘mum’ rota, sharing it fairly; Christmas approaching. Somewhere along the way, car returning and breaking down again; getting a Smart (?) car as it is the only one the garage has with a left pedal adaption (I drive an adapted car so ‘courtesy car’ usually a misnomer for me). Bouncing up and down the M1, pot holes like ravines or so it feels to my compromised bones.
5 days passes; dad still there. Seeing signs of life, of a will to live. Nurses and Physios have positive words, unlike the ‘5 days’ consultants and doctors. Is there hope? Who do we believe? We watch and listen and watch. We see improvements, or think we do, but could it be that we are merely terrified of losing him and see what we want to be there? No, there is hope. He has begun to swallow – something we were told he would be unlikely to regain – and he begins a diet of disgusting looking gloop alongside the life-grasping IV feeds. No matter it looks vile, he is swallowing, he is responding, he is doing that which the medics have said wasn’t possible.
Fast forward to January 2016 and back to Auntie Jean awhile. A visit for her 90th birthday (not the whole family as planned, so I forge on, a representative for all, with photos and videos on the iPad) and she, somehow, though still frail, restores me; injects energy and love. I can visualise her now, glass in hand (she’d requested champagne), bountiful cake before her, a look of wisdom and pleasure emanating from her. Home again, we try our best to retain that, to spread it among the others, to give to dad what Jean has given to us; let him know and feel his sister’s love and strength.
By now, the hospital are talking of ‘rehab’ for dad; we are told there will be a meeting with the professionals concerned, and family; silently, I doubt the meeting will happen and await a sudden move, which is what happens. My sister has a phone call on a Friday morning telling her dad is on the move to ‘rehab’ that afternoon; we haven’t got the energy to think or worry about a meeting that didn’t happen. Hope rears up again, a wild horse clamouring for attention. My nephew knows the ‘rehab’ facility as he is a physio himself; it comes recommended. We move on.
By now, mum has a live in carer. Our stays with her nailed the truth firmly to our backs and to our minds; mum cannot manage alone. She cannot, as she keeps stating – sometimes aggressively – cook for herself, clean the house, do the ironing, visit dad, do the shopping, take her medication; she needs support with all these tasks. We manage to get her to visit the GP – something dad had tried without success – and a referral to the memory clinic is made; the GP’s words echo without losing clarity as she confirms what we already knew. We are exhausted. Mum fights the presence of the carer, keeps telling her to go. She rants at us that she can manage alone. She continues to forget where dad is, what has happened, yet, at her memory clinic appointment, performs like a school child willing themselves to pass a test, like it is vital to their wellbeing. She is asked to tell the nurse all the words she can think of beginning with P and is given one minute to do this. The nurse can barely keep up, let alone spell half the words mum comes out with, yet she cannot remember, not even a flicker of recall, the name and address given to her by the nurse 10 minutes previously. Mixed dementia; complex.
Dad is stoical at rehab; motivated, universally liked by all, hard working, focused. He gets so far though his speech does not return bar a few words; “ah, well” his catchphrase. They work on him being able to stand in order that the chances of transfer from bed to chair, chair to wheelchair are possible; walking is not on the agenda. The rehab days seem good though littered with problems and trauma, from calls to mum from rehab unit staff, confusing her and making that anxiety balloon rise up further, (mum’s contact details were never given to avoid this and we tell the unit many times not to call her due to her dementia and anxiety), to meetings being cancelled last minute; making a complaint. It all seems like something that has blurred now; an ageing photograph left too long in the light. 6 weeks rehab has been mentioned many times down the line, though at the non-meeting meeting we did have (only 2 staff present), we are reassured people don’t get kicked out at this stage; there is time to find suitable accommodation and “the Social Worker will help with that”. Week 5 appears and 6 weeks becomes an urgent phase, a time for dad to move on and move out. We frantically visit care homes; some can’t take him as his needs are too great though rehab staff think he can go home with care coming in maybe 4 times a day. The Social Worker is elusive. We talk to dad about going home; he doesn’t want this. He doesn’t want to be confined to a room created downstairs, with no access to a bathroom, no privacy and limited opportunity to get out; more significantly, he can’t cope with mum who will not, we know and he knows, give him a moment’s peace. We use the ‘safeguarding’ word with professionals to get through; it works – he wouldn’t be safe at home. We know he would be miserable too but the ‘safeguarding’ word makes people stop in their tracks in a way that misery doesn’t. We look at 2 homes that should be able to take him; 1 stands clear as the only real option for dad but we will have to wait – hard to say how long but weeks, not months. The other can take him immediately and we are forced to let him go there in the interim because his 6 weeks are up and that promise of not being thrown out at 6 weeks, on the exact day the 6 weeks is up, proves a whisper that no one but us heard, words thrown to the winds.
Going there with dad and having to leave him there was another of those moments that haunt me like a post traumatic stress memory; the images, sounds, smells and colours whirling and mocking. I knew immediately he arrived he didn’t want to be there. I had to try my best to explain to a man with Aphasia (difficulty processing as well as speaking) that this was temporary; he would be moving on somewhere better very soon. I felt like a failure. Heartless. Cold. Doubts sprung up like leaks in a pipe that cannot be plugged quickly enough to stem the dreadful flow. I flailed around, trying to hold onto the fact that I was in this with my sister; we had made this decision together and we had the support of our loved ones beside us and around us. My sister and I ‘re-found’ each other on 9 December 2015; I use the phrase advisedly because we had been lost to each other for too many years but that is also another story. I once described this to someone, a long time ago, as a sense that my sister was there beside me yet there was an invisible wall between us, preventing contact, preventing connection. On December 9 2015 the wall fell peaceably apart and it won’t be rebuilt; I have complete and absolute faith in that. We have stood together through every moment, every decision, every heartache; it is as if the wall, and the years accompanying it, were never there.
A few days after leaving dad looking lost, alone and unhappy, the first choice home phoned to say they had a place for him and he was able to move there within a few more days. I visited the day he moved and he seemed more at peace already despite his brain scrabbling to compute the information. By the weekend, he was looking relaxed, at home. We began to hope again. Hope; that word is a thread sewing its way through sometimes thickened cloth, struggling for its first real catch of breath.
We spoke of what was going on with our parents to friends, to strangers even; they confirmed, irrefutably, what we felt within ourselves – what we were going through was big, huge, the magnitude overwhelming. People gave us words, kind words, calming words, as we struggled on, battling with emotion, with pain. The realisation grew incrementally that mum’s needs, mum’s demands through dementia and anxiety, were swallowing us all up; they were eating cruelly into every moment with dad, or about dad, casting shadows everywhere we turned. Walls falling apart peaceably with my sister became insurmountable walls of mum. She was struggling, we knew that; anyone could see it but the one person who needed to – herself. Carer changeovers became anxiety driven nightmares of monsters and dragons. She refused to buy food at the supermarket. She constantly took to her bed. She had chest pains provoking emergency services, ambulances speeding up and down the quiet streets of her village; hospital visits and stays but no sign of heart problems. In one amusing moment, my sister and I were texting and emailing, me telling her that an ambulance was on its way yet again, her saying she had just seen it go past her house – she lives up the road from mum. Somehow, ridiculously, that seemed funny, comical; a laugh in a dirty drain. We had to take the laughs where they found us. People talk of challenges and behaviour ‘escalating’ in those with dementia; we were up the top of the Empire State Building here – in the skies with no more floors, no more steps or side rails to assist.
That brings me to today, this time, this hour, this minute, the very second I am in. Mum is now in a care home; her needs finally overwhelmed her and she was hurtling like a helter-skelter rider losing control in her downslide. I wish I could say she is happy, content even, but she is not. They tell us it’s early days so hope is our only hope; more clinging, I guess? Meanwhile, mum is railing like an out of control 2 year old who can’t, who won’t be calmed. She is shouting and banging and cursing; all inhibition has fallen away like a skin shedding, a shroud unleashed. I don’t feel bad, strangely; sad but not bad. I wonder if mum just needs to let those years of unchecked, undiagnosed anxiety spill from her; needs to be demented awhile. I hope she returns from that place but I just don’t know.
Dad, meanwhile, is getting more of our attention; the attention we feel he should have been getting all along through this complicated, twisting story. He is laughing. He has new words. He is brighter. He seems so calm, content and that is a gift to admire. Each day I am glad he is still there, he is still dad, he is OK despite all that has happened. My sister and I have continued to visit his beloved sister and our dear auntie, Jean. We felt, though could hardly comprehend or express, the pain of knowing they, almost certainly, would not visit each other again; kept saying, “never say never” but knew they were just words. Inspiration comes in strange forms and who would have thought technology would be that inspiration? As my sister visited auntie Jean over late May Bank Holiday, I visited dad. We both had iPads clutched to our souls; iPads and hope. The plan? To give Jean and dad the chance to communicate, albeit that dad’s words are still few. Now I have a new image to paper over those I wish I could obliterate. As Jean and dad saw each other, the acknowledgement was instant; the love and tenderness toward each other held in that moment like a pause, a breath to catch, a touch to sense. Jean’s words, “my brother, my brother, I love you” brought salty tracks down warmed faces – never before has ‘not a dry eye in the house’ had such meaning. Mum already has the iPad we had all clubbed together to buy for herself and dad for Christmas (yet another story there), dad now has his and Jean’s sits urgently awaiting my next trip northbound for Aberdeen; its red cover as bright a beacon on a lighthouse calling for attention. They will meet again; they will all meet again and life will be different forever but not impossible, maybe.
Where do botanics come in? I was a reluctant passenger in one of Barbara’s tea towel trips – yes, that’s another story too – to Bristol, following one of her favourite tea towel artists who was part of an exhibition there. Reluctant maybe, but nonetheless now forever in her gratitude (don’t tell her). The tea towel artist was housed within Bristol Botanical Gardens so this is where we headed first. The tea towel designs captured me; drew me into their calm, their captivating light and shade. Having seen the tea towels, and Barbara having bought several, I wanted to see the glasshouses of their inspiration. Glasshouses, I confess, have never held much interest before, yet I was drawn through with lightness of foot and clarity of mind, idly photographing images with my iPhone – hadn’t taken my ‘proper’ camera as I didn’t know I’d need it. A peace descended me. I was in a place where no thoughts intruded or harangued me for attention. And I made a decision to visit as many botanical gardens as possible. To combine my 2 passions of writing and photography. To keep a firm grip on this newfound feeling. I wondered if I would, in reality, find it again, or if it was some cruel joke, some freakish incident but I have visited 3 more gardens since and it remains, certain as words on a page or an image from a camera. Meltdowns and Botanics, that’s where I’ll be so keep an eye out for me.
© Liz MacKenzie
Note – the tea towel artist mentioned is Penny Seume who, without knowing it, is also in my debt.