dementiachallengers

Signposting carers of relatives with dementia to online resources


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Moving on, looking ahead

It’s coming up to the first anniversary since mum died and it’s been a strange time. I really hadn’t appreciated how significantly life would change after being a carer. When you’re caring for someone, that’s how you see yourself, often above any other label you may use. First thoughts in the morning and last thoughts at night are about the person you’re caring for. If you have paid employment you’re always playing the “what if?” game; “what will I do if I can’t work, if I have to suddenly take time off, if I can’t meet deadlines?” If you have family responsibilities there is always the fear that, at any time, you will be forced to choose. Which is most important, caring for your sick child or stressed partner, putting yourself first if you need to see a doctor or are recovering from illness, or taking care of your relative with dementia?

It becomes impossible to be impulsive, or to take holidays, or to visit friends for a coffee, or to go shopping. These things so many of us take as read, they’re part of everyday life.

After mum died I found life opening up and offering me unlimited possibilities. I could go on holiday, see friends, spend more time with my children. I found myself feeling guilty at relishing all these things, because they only became possible after mum died. I found it difficult to deal with all the choices.  I had time on my hands and lots I could be doing, but was still in the grip of bereavement and guilt.hols

We ticked off the “firsts”;  mum’s birthday, Christmas, funeral anniversary. Family dynamics (which had changed significantly over time) started to shift and to settle back into a different, warmer and more caring place as we shared our feelings and thoughts. No longer united by the intention of doing the best we could for mum but by being siblings with a shared history and experience, albeit different from each of our perspectives.

I had always considered myself to be resilient; family and friends labelled me as “strong, a coper, the go-to person” but the first year made me realise my vulnerabilities. There is no easy way to move on from being a carer, you have to take it a step at a time, a tear at a time, slowly plodding through each day and trying to deal with whatever life throws your way. I learned to ask for help and to be open about my feelings, to reconnect with old friends I’d not had the time to spend with, for such a long time. They never judged, but just listened and cared.  Mostly, I reconnected with myself.

I realised how much support there was for me online; people I’d never met and only engaged with on Twitter helped me adjust, allowed me to ramble on and on about mum and to share pictures and snippets of our time together. For many of them it was a message and a thought, but each one of those made such a difference and they will never know just how much it meant and how much it was appreciated.

I will never regret the time I spent with mum and know I made her feel loved. The light in her eye when I entered the room, even in her dark last days, stays with me still. She gave me so much more than she ever knew. She taught me patience and empathy,  and I learned to be creative in finding solutions to help her and learned many new skills as a result. Mum taught me to appreciate the joy of everyday things, and I rediscovered the sentient part of me.  We shared our hopes and thoughts, we glowed in the light of a lovely mother and daughter relationship.

And now as I approach the end of the first year I’m in a much better place. I’m looking ahead. I can recall all those happy times with mum when we laughed and danced together, watched rugby, sang songs, and hugged – there were lots of hugs. I can look at old photos and listen to mum’s voice on the many recordings I made and although they make my eyes prick, that’s ok.

I’m moving on and looking ahead, and that’s a good place to be.

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There are pages on my website to help if you’re on the same journey. Take a look a the tabs under the HOME section.

 

 

 

 

 


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Moving on

It’s almost nine months since mum died and it still feels strange, as though I’ve dreamt everything that happened since last winter. I’m sure I’ll open my eyes and hear her calling me, or the sounds of her opening and closing cupboard doors will snap me to wakefulness. It’s been a strange time.  At first, after she died, all my time and energy went into organising ‘stuff’, writing a eulogy, sorting out the funeral, supporting siblings and ploughing through all the paperwork. There’s lots of paperwork. Now though, it’s almost mum’s birthday, and then it’s Christmas.

This time of year has made me think of other carers, those whose caring role has ended on the death of their relative. I wonder how they’re feeling and how they’ll cope with the festive season. I feel sad when I think of friends who’ve been in this situation and I’ve thought they’re coping well and didn’t need additional support from me. It’s only now I realise I could have done so much more to support them.

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Moving on is the only way to cope with such significant loss and change to one’s life. Actually, there’s no alternative. It’s only when the person you’ve cared for is no longer here you begin to appreciate just how much of your time and energy has been dedicated to your carer role.  Making significant adjustments to your life afterwards takes time, a willingness to adapt and huge energy.

Friends and family can be a great comfort but we often find support begins to ebb away after a few months and for many carers, that’s just at the point when they finally have time to stand still and reflect, and really need the support.

If you’re reading this, and realise it’s been a while since you’ve checked on that friend or colleague who lost the person they’ve been caring for a few months back, why not give them a call, or drop in to see them?  You may encounter them at the local shops or walk past their desk at work and they probably look ok, perfectly normal, they may even laugh or make jokes. Inside, they will still be grieving. Inside they may be dreading Christmas, they may be recalling times past spent with their relative. They may feel like a little child, wandering alone and yearning for a hug.  They may just feel that something’s missing, not quite complete.

Think of something you could do for them. It doesn’t need to be expensive and doesn’t need to take time. An invite for a coffee, or even giving them a call once in a while may really help. If they now live alone, ask them what they’re doing for Christmas. Really ask them, not just a cursory question. And wait and watch for their answer. It may be a slick and well practiced “I’m looking forward to doing nothing”, but what do their eyes tell you? It may even be appropriate to invite them to spend the day with you and yours but I know that’s not easy for many people. Would they appreciate a call on Christmas Day, a text or a message on Facebook? We all have time to do that.

If they’re not very computer savvy, could you help them access support online? Many carers and people who were once carers find support from others online where there are many lovely caring communities. Particularly at holiday time these carers are often online as a way of coping with change and loneliness and always welcome new members.

There may be local events, walks, Christmas markets and social occasions – why not arrange to go together for a few hours? If you do something like this, please go back into their house with them when you return. There is not much worse than having a nice time and going back to an empty house so invite yourself to stay for a cuppa, and drop them a text or a short call later to thank them for going out with you. These little things can mean the world to your friend or colleague.

Don’t just do these things at Christmas. Think of them often, and check in with them to see how they are, how they’re coping. Talk to them about finding new interests, getting support. Take it slow and steady, don’t nag and don’t wheedle. They are on their own journey, moving on after being a carer. That takes time and energy, and your friendship and support.

 


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Mum, me and dementia – the final curtain

After a fall and breaking her hip, mum was admitted to hospital during late winter. Initially the prognosis seemed good, because apart from dementia mum had retained physical fitness so the prospect of her having a hip replacement, although making us anxious, meant after recovery mum would still be able to do the things she loved to do.

I pictured her being in a wheelchair for a while, and still able to visit the shopping centre, stopping for a coffee at her favourite place. I imagined mum being a bit like the queen – waving grandly to other shoppers as we wheeled past them, her encouraging me to walk faster and faster so we could get to her usual shops, making loud “brmm, brmm” noises as she giggled. We thought it would be a long haul but that she would be back on her feet fairly quickly after physiotherapy and lots of care – mum had always been a very determined and strong woman and I felt so grateful she didn’t seem to understand the implications of her current situation.

Unfortunately other things happened after her hip replacement; other medical conditions which resulted in her being moved to and fro between hospitals. You can imagine how stressful that would be for someone with dementia – constant changes to the environment, unfamiliar wards and staff, family trying to remain calm while having to endlessly repeat things to staff that should have been common sense. It was the little things that frustrated – nurses asking mum to confirm her date of birth when she couldn’t remember it;  being told to use a bedpan when in mum’s world this meant wetting the bed or even worse – soiling it; staff thrusting a buzzer under her nose and telling her to use it when she was finished, when poor mum had no idea what the buzzer was for. Worst of all, medical staff talking over mum as she lay in her bed as though she was invisible, and the lack of understanding when we tried to explain what it meant when she repeated the same  phrases over and over when she was in so much pain she used them as a mantra to help her cope with the agony.

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We took it in turn to sit with her, to play her favourite music, massage her hands, paint her nails and feed her ice cream – lots of ice cream. There were bad days punctuated with the good. Days when mum cried with pain and frustration, days when she ate well, sipped cola, and was able to be moved from her bed to a chair and could sing and laugh and talk. Finally mum returned to a small hospital she’d been in a few weeks earlier and we were relieved; the staff were wonderful, caring, insightful.  They treated mum as a person and us as their partners in caring for her. They listened and understood, they cuddled and consoled. They sang along with Doris Day and danced in the small side ward, encouraging other patients to join in. They watched as we offered hand massages to other patients when mum was dozing, they showered her and dressed her in day clothes, taking such tender care as they brushed her hair or applied lippy – knowing how important this was to her. We felt we could now leave her for a few hours, safe in the knowledge staff would do everything in the right way, use the language we had taught them to use, and understand the phrases she used when she needed additional pain relief and most importantly they knew the signs that showed she was becoming distressed.

Mum had many years of living well with dementia but her last few weeks were sometimes bloody agonising, painful, distressing, and she suffered so very much. It’s important to acknowledge that suffering because it was part of her experience and it would be an insult to her memory not to recognise that, nor the brave and dignified way she dealt with it.

As a family we assumed mum was on a slow road to recovery but she suddenly began to deteriorate, and within a short while she was wheeled into a side room, phone calls were made to family members to let everyone know that mum was in the last hour of life.

Mum died in March -it still feels very strange to write these words. I still find myself hearing songs and thinking “I ought to play that for mum” or walking past the frozen food section of the shop and wondering “does mum need more ice cream?”. I can’t believe she is gone – we can’t believe the person who made us all rally together to do the best for her, the focal point of so many discussions, has gone. I began to realise I am the family matriarch now – that feels pretty grim, to be honest. Mum’s death reminded us all of our own vulnerability, and also that we should make the most of what we have. Suddenly the things we measure much of our lives on, isn’t important. It’s about appreciating the moment.  Mum taught us so much in the years she lived with dementia. We stopped to smell the flowers, we sang songs and danced in the kitchen.  We had picnics and splashed in puddles, ate ice cream and snuggled in her bed watching old films.  She taught us to appreciate all those simple pleasures. I remember last summer sitting in the garden and watching mum squeal with pleasure as she slowly picked petals off a rose, relishing the velvety petals and the glorious scent. I recall conversations we recorded and played over and over, mum laughing out loud as she heard her voice – the magic of a mobile phone entranced her. Caring for mum during the last few years has made us all better people, we learned compassion, patience and forgiveness. We learned how to work together and most importantly, to live in the moment.

We will miss her in so many ways, and we’ll never forget the way we made her feel and the way she made us feel too – she often said “you take good care of me” and “thank god you’re here” and many, many times, she told us she loved us. Things she struggled to say before dementia came to stay.

A few days before her death, as I played mum’s favourite songs to her and she sang along, waving her hands in the air, her glossy freshly painted purple nails catching the light from the window, my eyes pricked as Sinatra crooned the words

“I’ve lived a life that’s full
I’ve travelled each and every highway
But more, much more than this
I did it my way”

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Que Sera Sera

The words of Mum’s favourite song are so poignant now “the future’s not ours to see” as she lies in her hospital bed, four weeks after a fall which resulted in a hip replacement. She has always been so fit physically but now has a raft of medical issues, and the prognosis isn’t good. Each day blends into the next as we take it in turns to sit with her, encouraging her to take little sips of liquid and playing her music as we coax her to eat a mouthful or two.

In some ways dementia is helping her now as she doesn’t grasp the enormity of her illness, nor the fact she will never again sleep in her own bed. Dementia is still cruel though, terribly so. Mum is disoriented most of the time and keeps asking where she is. Although she recognises each of us now and then, she finds it difficult to express how she feels or when she’s in pain.  The nursing staff are amazing, listening patiently as I describe that certain words or phrases which may sound innocuous to them actually mean she’s hurting.  They shower her and undertake personal care tasks with patience and compassion. They take care of the family too and it’s the little jokes that keep us going. Nothing is too much trouble and I learn a lot from them, particularly around how to listen, really listen.

I walk onto the ward and towards the little bay where Mum’s bed is.  She looks tiny now. How gleeful she would have been in days gone by at her weight loss. I’m greeted by other patients.  A couple of weeks ago while mum was sleeping, I gave everyone a hand massage and painted their nails. It was the very least I could do, they are always encouraging and incredibly kind, offering me words of support when they watch me try to comfort mum as she shouts out or even cries. They sing along when mum’s alert enough to listen to and enjoy her music “whatever will be, will be” and laugh as we move our hands in time to the words “when the moon seems to shine like you’ve had too much wine… that’s amore”.

Mum’s awake and fairly alert. I greet her by blowing raspberries into her neck and she giggles, whispering “naughty!” into my ear.  We both laugh.  With an extravagant flourish I present her with an ice cream, and then bow.  Again she laughs, and I’m delighted when, without much prompting she takes the unwrapped ice cream from me and carefully moves it towards her mouth. She closes her eyes with pleasure as the creamy cool ice meets her parched lips. She eats it quickly – my role is that of Chief Chocolate Catcher as the small white chocolate flakes break off and I capture them before they reach the bedding.

Later, Mum strokes my soft pink patterned silk scarf, and without realising it she pulls it from my neck. I put it to her nose so she can smell my scent and she knows to inhale and capture the perfume.  As she falls asleep, I drape the scarf across the bed and onto her hand and I tiptoe from the ward, eager to feel the warmth of the day on my skin and to grab another coffee.

In the morning when I visit again, Mum’s wearing my scarf and is sitting upright eating an ice cream.

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A letter to Mom for Mothers’ Day

Dear Mom

Over the past few weeks life has changed so drastically for you, and our well considered plans about the best next steps have taken a nose dive.  As a family, we had always promised to take care of you for as long as we could.  I recall the painful conversation when you asked me for reassurance that we would never put you into a care home, and the tears we both shed when I told you we’d look after you for as long as we possibly could.

This Mothers’ Day there won’t be any flowers for you.  After your recent fall, the fractured hip, the yo-yoing from one hospital to another, you’ll be spending the day in a hospital ward, where the only flowers allowed will be in one vase, on a window sill, far away from your bed. You no longer understand what Mothers’ Day means, and the significance of it all.

You and I had a turbulent relationship for many years, and it was only a few years ago I realised the reasons behind it. The trouble is, we’re so similar, you and I. You didn’t like the part of me that reminded you of bits of yourself, and I didn’t like the fact I was like you in so many ways.  Ironically it was dementia that brought us together, your new relaxed self allowed me to show you my humorous and silly side. You laughed as I pulled faces, or sang your favourite songs or waltzed you around the kitchen.  You giggled with delight as I blew raspberries into your neck, and we hooted with laughter as I scrolled down the selfies we’d taken together on my phone.

You told me you loved me, oh so many times. You called me “Mommy” when I dried your tears or rocked you to sleep, and it warmed my heart to know I could make you feel safe and loved.

We rediscovered each other, had picnics, jumped in puddles, picked flowers and laughed, and laughed and laughed. I have rejoiced in the time we’ve spent together and come to terms with the past.  You’ve told me I’m a good daughter and mother and that you have fun times with me.  We’ve watched old black and white films, cooked dinners together, and snuggled up on cold winter days. I’ve recorded our conversations and you’ve laughed as I’ve replayed them, smiling as you heard yourself tell me “I’ll never forget this, I’ll never forget”.

It breaks my heart to see you lying so small and so still in your bed, your eyes filled with confusion and pain. It makes my eyes prick when I hear you saying “thank god, you’re here!” as I approach your bed.

Soon you will be moving to another new place, this time in a care home where I hope the company and attention will help you to smile and where the time we spend together will involve lots of nice things and I won’t be distracted by domestic chores but be able to focus all my attention on you.

Wherever I am and whenever we’re apart, I will be thinking of you, wondering what you’re doing and looking forward to holding you close when I visit. Slowly, as parts of you fade away, I’ll use new ways of reaching you, and making you feel loved. I will never give up, I will always see the vibrant, oil painted glorious version of you.  Whatever our differences in the past, you have shaped me and made me who I am.

On this Mothers’ Day, just like every other day, I will recall our good times, your laugh and your words. I will never forget this, I will never forget you.

xx

 

 

 

 

 

 

 


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Shrinking

Over the past 6 months mum’s decline has become more noticeable, particularly to those who don’t see her all the time.  It’s as though she’s shrinking, not only in height (she’s now the same height as me, whereas she was always significantly taller), but it’s as though she is slowly shrinking into herself.

It almost feels to me as though she was once a lovely oil painting, and gradually the colour and layers have slipped away, till she was a line drawing – now those lines are fading too. It’s a terrible way to describe someone you care for, but that really is how it feels to me and much as I try to reach inside and pull out the bits of her I know, it’s becoming increasingly more difficult to do so without them slipping through my fingers.

Mum isn’t talking as much as she was, and during conversation her response is usually “uh huh”.  We’ll have several hours of that at a time, where she seems to be internalising everything, and then suddenly she’ll get excited about seeing a bird, or a flower outside. She’ll point at it and try to find appropriate words to describe the experience – sometimes it’s easy to understand what she’s seeing and at other times it’s almost impossible and the stress that puts on the person caring for her, is enormous.

She’s talking to herself more too.  When we’re out in the car she speaks very quietly and even I with my “bat ears” can’t hear her but when I tune in, she’s often having a conversation with herself about what she’s feeling (cold, thirsty, etc).

I find myself wallowing in self pity, thinking I’ve done all I can but now I can’t reach her. I miss the laughs and the conversation. I begin to grieve all over again, a journey I set off on a few years ago.

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A few days pass, and it’s a sunny morning.  I decide to set up a picnic lunch in the garden – mum’s excited at the prospect, really excited. She’s more enthusiastic than I’ve seen her for a long time.  I plan the meal carefully – all her favourite things, and we sit on the large rug, kicking our shoes off and wriggling our toes in the sun.  Mum laughs, that deep and gurgling laugh of my childhood.  She raises her arms up towards the sun and spreads her fingers. She pulls up pieces of grass and sniffs them appreciatively.  She eats her lunch – and most of mine, and laughs again.  We take a stroll around the garden and she points at the flowers, marvelling at the colours of bright pink and purple.  She stoops to sniff a scented rose, then spontaneously picks the flower and says she’s going to put it into her room so she can smell it again later.  We sit and watch a bee gathering pollen from a lavender bush – “what’s that thing doing?” she asks.  I explain and her eyes widen.  It’s as though it’s the first time she’s ever heard of bees and what they do.

We spend several hours, strolling in the garden, stopping to stroke and rub and touch and smell, and listen. Mum’s helping me appreciate the garden in a completely different and totally absorbing way, being mindful and being part of it all.  I realise too that she has given me insight into something very important.  Although she is talking less and internalising more, the most important thing of all to her is her senses – and I’d begun to forget some of that.

We go inside and I pull her close for a hug, nestling into her neck and absorbing her scent, then impulsively blowing raspberries.  She shakes with glee, wriggles in my arms and laughs, and laughs. She can’t stop laughing and neither can I.  Such a silly little thing, but perhaps deep inside it reminds her of something her mother used to do, when she was very young.  Something that made her feel loved, and safe and secure.

The next day when we shop, I encourage her to pick up fruit and vegetables, to smell them, stroke them, describe how they feel.  It takes us an hour to buy food for dinner but it’s been an absorbing hour and we’ve both really enjoyed it.  When we get home mum asks “can we sit outside in the sun, it feels so nice?” and of course we do.  Each day is a repeat of the first, enjoying the warmth of the sun on her skin, then examining the plants and flowers, the stroking and sniffing and rubbing and listening. It’s a pleasure mum can enjoy over and over again – and of course so can I.

Although mum is slowly disappearing inside herself, the sentient part of her seems to be becoming stronger as other things fail, and that’s still the way to reach her and for the two of us to connect. The oil painting is still there, I just need to look a little closer and I need to remember that the next time I feel I’m losing her.

Senior woman in garden full of flowers.

There is a page on my website with some tips on how to engage the senses, you may find ideas there on how to spend a lovely time with your relative with dementia.


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Memories of frocks and frills

Mum used to make all my dresses. My earliest memory is of her at her sewing machine, making me a pair of winter corduroy dungarees. I can bring her to life by listing fabrics; gingham, voile, linen and cotton; chambray, silk and taffeta. I ask her about the dresses she made me and she can perfectly describe the long sashes, the peter pan collars, the broderie anglaise, the hand embroidered ducks and rabbits, and the smocking. Pinafores, party dresses made from taffeta, shorts sets and sprigged cotton pyjamas. She becomes animated as she describes her favourites, how cute I looked, the colours, the feel of the material as it slipped through the sewing machine. On a roll now, I ask her about the dresses she used to make for herself, and she can hardly get the words out, so excited is she. Dirndl dresses, circle skirts “always cut on the bias”, white peasant blouses and elegant chiffon, dresses with sweetheart necklines and wide fabric belts “they were always a bugger to make”, cocktail frocks in vibrant colours – often purple of course. We pick through the photo albums and I ask “I wonder if you made this one, or this one?” pointing them out to her one at a time. Her voice falters “I think so” – then turning to me “did I?” I tell her “of course you did, I remember you telling me all about it when I was young” and she sighs.

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I talk to mum of long nights, when the sound of the sewing machine woke me up at past midnight, and I got up for a drink. She’d call out “make me a milky coffee, there’s a love” and I’d go into the sitting room to find her at the machine, a cigarette smouldering in the ashtray, bits of tissue and cotton on the floor, a pack of chocolate at her elbow. I helped to pin soft tissue patterns onto the delicate fabric, making sure they were facing the nap of the material, or not, depending on her instruction. She smiles as I describe helping her to make an emerald green cocktail frock, all shimmery and sparkling with a glittery bodice – and laughs as I describe how her décolletage sat so snugly as she dabbed her throat with scent before going out in her new frock the following night. More photos, this time of mum in her prime, a beautiful woman with deep red hair, tall and elegant, sipping cocktails in a jazz club. “Is that really me?” she asks. “I was pretty then.”

I sense a moment of sadness as she recalls those times, looking down at her hands, still glamorous with their long red nails but the skin speckled with age spots and not as smooth and white as they were once. I slip a CD into the player and Sinatra croons “come fly with me, lets fly, let’s fly away” as I lead mum from the table and into my arms and we begin to sway in time to the music. I describe to her how it may have been when she was wearing the emerald green frock and dancing to this song, the smoky atmosphere of the club, the buzz of conversation, her feet pinching in her matching shoes, the warmth of my father’s breath on her cheek. I recall the preparations before going out; setting her hair in curlers dipped in beer to help the curls set, and the scent of her perfume as she kissed me goodnight. She leans back and laughs out loud, a deep and throaty chuckle “I loved it, I loved it”.

Nowadays she doesn’t go out much at night and can’t cope with parties and loud conversation – she struggles to talk to strangers and is confused by the chatter. Her clothing is more sober, and she doesn’t wear frocks or dresses, telling me “I’ve only ever worn trousers” – and I don’t put her right, it wouldn’t be appropriate. She still chooses her outfits with care, but they’ve become her “uniform” – always trousers, inevitably a purple top, and flatter shoes now as she’s prone to falling otherwise and her feet, who have been such heroes after 82 years, are suffering from wear and tear.

She adorns her fingers with rings, admiring her long shiny nails “all mine, all mine” she tells me gleefully. She chooses a necklace, and a bracelet, and polishes them with a cloth before putting them on. She sprays her perfume and together we brush her hair “so thick still” she comments. Together we look into the mirror, both of us smiling and she says “I still look ok, for an old girl, don’t I?” “You’re beautiful, mum” I say, “let’s take a photo of you” and she eagerly points at my phone and says “take one of those selfish thingies, with both of us” – I comply. She looks at the picture and grins – she won’t remember this tomorrow but I’ll show her, again and again. She may be wrapped in a dementia cloud, but she’s still my beautiful mum.