Coping with Alzheimer’s: Sadness, Love, and Humour

I saw a lonesome forget-me-not gaze up at me the other day,
late in the year for these delicate blue flowers,
but they will always remind me of my mother.
They will forever be linked with the disease that stole her.

The forget-me-not is the poster flower for Alzheimer’s, so when I noticed this little blossom peering up at me, it brought the condition back to my mind, and reminded me that I hadn’t yet read a book loaded up on my Kindle. Maybe it had been too soon when I bought it, Mum passed away at Christmas last year, but sitting in the Dr’s waiting room with Dad the other day I clicked on the book and opened it.

© Lisa Shambrook

Instead of bringing tears, which it does too, it brought a smile to my face, many smiles. Finding a kindred spirit can do that. I relate strongly with the author S. R. Karfelt. Her candid humour, outright frankness, and sincerity shone through in her words. Our situations regarding Dementia are different, we’ve been through very different circumstances, but the familiarity of her anecdotes and narrative rang so true.

Alzheimer’s is the thief of time, stealing memories and lives with no compunction at all…and it is on the rise. More and more people are being diagnosed and figures show that 850,000 people lived with dementia in the UK in 2015 and it’s set to rise at a rate that will mean over 1 million in 2025 and 2 million in 2051. I’ve blogged about Prevention and Awareness before, and there are things we can do, changes to our lives, diets, and routines that can help, but this post isn’t about prevention or cure, it’s about living with the disease.

© Lisa Shambrook

Please remember that living with Alzheimer’s affects a whole plethora of people for every one person diagnosed. Whole families and communities have to come together to care. When someone in your family has dementia, you can’t walk away, you can’t hide, you can’t bury it. The condition sneaks up and robs you of your loved one, but unlike other diseases that leave you to grieve after you lose your cherished family member, dementia leaves the shell of the person with you. I can’t describe the pain that that instils.

In her book, Nobody Told Me: Love in the Time of Dementia, S. R. Karfelt has been through all of this and eloquently puts her experiences on paper. For anyone facing dementia within their family, this is a book that will show you that you’re not alone. You’ll know you are part of a growing number of people dealing with this disease and staring it right in the face with defiance – and humour – you have to laugh, and you’ll cry too. Lots.

So many stories in this book tickled me, made me smile, and made me belly laugh, because I’ve been there. You have to attack Alzheimer’s with humour, wit, and love, they give you the strength to carry on.

© Lisa Shambrook

When Mum complained of the noisy street party going on in her back yard, outside her house, we had to humour her, because my parents lived in the middle of a field, not a sound anywhere. When she thought I was her mother, I held her close and rocked her. When she was convinced Dad was a doctor, I told her she’d better take her medication with no complaints. When she thought Dad was a stranger who had kidnapped her and was holding her hostage, I talked her through it, tried to allay her fear, and help her calm down.

Can you imagine believing you’re only fourteen, and then finding out you’re married and he’s an old man? Imagine looking in the mirror expecting to see your twenty-five-year-old-self gazing back and instead seeing a seventy-year-old with a very different face? Imagine nurses/carers visiting every day when you don’t think anything is wrong with you at all.

© Lisa Shambrook

Imagine forgetting how to walk, or how to lift your food from the plate to your mouth with a fork. How would you feel if you couldn’t remember the beginning of the movie you started watching an hour ago? How would you feel when your grandchildren walk in and smile at you, but are complete strangers because you believe you’re twenty, and there are still eight years before you give birth to their mother yet?

Think about being in hospital or a home and not having a clue how you got there, or why, or for how long, or who took you there, or where you are, or why you’re there, or how long you’ll be there, and there’s nothing wrong with you, where are you, how did you get there, there’s nothing wrong, who took you there, when can you go home, as there’s nothing wrong… Where am I?

This is life with Alzheimer’s. It hurts – not only the patient, but the family, and carers, and friends… Alzheimer’s hurts everyone it comes into contact with.

So, if you’re dealing with, living with, coping with Alzheimer’s please know that you’re not alone. Please laugh as much as you cry. I’ve told my children that if I ever get this disease they are to treat me like normal, but play to it, allow me to stay in the time that I believe I am in, humour me, give me adventures, if I don’t know where I am – make it up!

© Lisa Shambrook

People will tell you how to cope with this condition when you’re caring for a loved one who doesn’t know who you are, but as long as you are compassionate and loving, you’re doing the right thing. Take time out. Laugh, I cannot say this enough, not at the person sometimes not even with the person, they won’t understand and you don’t want to hurt or alienate them even further, but you need to deal with the mess it makes of your life too, and once you’re out of the immediate situation talk through the absurdity Alzheimer’s proffers you and laugh at it. Irreverence can see you through it all.

Tears will fall, that’s a guarantee, but don’t ever think you’re alone.

The Alzheimer’s Society is an amazing resource who will help you through this minefield, as will those who’ve been there already. Stay strong.

You can buy
Nobody Told Me: Love in the Time of Dementia
by S. R. Karfelt on Amazon UK Kindle,  Hardback, and Paperback.
Amazon US Kindle, Hardback, and Paperback, and from your local Amazon and other online bookstores.
Please visit her website for further information and links.

Alzheimer’s Awareness Week – Forget-me-not…

This post is peppered with forget-me-nots
because Alzheimer’s is the thief of time
stealing memories with no compunction at all…
Please, forget-me-not.

Dementia Awareness Week is the 17^th to 23^rd May and this post is painful to write because Alzheimer’s has made me very aware of what it can do. It’s stolen my mother and there was so much left unsaid – things that now will never be said and that leaves regrets and resentment in its wake.

Quoting from The Alzheimer’s Society website: The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes. Dementia is progressive, which means the symptoms will gradually get worse.

© Lisa Shambrook

I don’t know my mother’s actual diagnosis, there are several types of Alzheimer’s and Dementia, but my dear father has always handled it with the ostrich approach, with his head pretty much in the sand. I understand this – it’s tough to see your loved one fade away in front of you and even tougher when they have no idea who you are. She has a professional diagnosis though and is on medication but it gets worse and there’s nothing to stop it.

For my parents’ privacy and respect I won’t go into their circumstances, my mother has many more illnesses and conditions, and everyone has different situations when this disease hits. But awareness is vital and help for the afflicted and the carers absolutely essential. The Alzheimer’s Society, whose symbol has also been the forget-me-not flower since 2012, is one of the first places to go for advice and they are wonderful, and Age UK have helped too, but Social Services and NHS help is also inevitable and crucial. Assessments need to be made and help given. I can’t report on the effectiveness of Social Services, as the planned assessment was cancelled and I haven’t yet heard back from them.  Be prepared for long waiting periods.

This is a disease that breaks hearts, and it’s on the rise. So is there anything we can do to prevent it?

© Lisa Shambrook

To try to thwart dementia the NHS recommends we should: eat a healthy diet, maintain a healthy weight, exercise regularly, don’t drink too much alcohol, stop smoking (if you smoke), make sure to keep your blood pressure at a healthy level.

This is pretty much blanket advice and I shrug a little, this is the stock advice for a healthy life, not just dementia prevention.
What can you really do to help keep dementia at bay?

Analysis by Age UK suggested that lifestyle was responsible for 76% of changes in the brain and that people could go some way to avoiding the disease by adopting or quitting certain habits. Taking regular physical exercise, eating a Mediterranean diet, not smoking, and drinking alcohol in moderation were all found to decrease the risk of developing Alzheimer’s and other forms of dementia. In addition, preventing and treating diabetes, high blood pressure and obesity was also found to reduce the risk.

I have also heard that learning another language, drinking raw fruit and veg, reducing stress and meditating, running 15 miles a week, laughing more, sleeping more and lowering your sugar intake can all help.
Learning a language, laughing, keeping your brain active and engaged all help create new neuro pathways in your brain and helps grow new brain cells, therefore keeping the brain busy and fully functioning. Alzheimer’s destroys brain cells and once destroyed they cannot be recovered. Thus you see memory loss and lost skills that will never be salvaged.

These are ideas and helps, and current medication can halt the progress of Alzheimer’s to a degree too. However, more and more people are being diagnosed and current figures show that 850,000 people lived with dementia in the UK in 2015 and it’s set to rise at a rate that will result in over one million sufferers 1,142,677 in 2025.

© Lisa Shambrook

I wish I had the answers to Alzheimers and Dementia – but I don’t which is why I’ve linked The Alzheimer’s Society, but I’d like to finish on two positives:

© Lisa Shambrook

Five Things You Should Know About Dementia from The Alzheimer’s Society:

It’s not a natural part of ageing

It’s caused by diseases of the brain. The most common is Alzheimer’s

It’s not just about losing  your memory – it can affect thinking, communicating and doing everyday tasks

It’s possible to live well with dementia

There’s more to a person than the dementia

They suggest we:

Spend more time with friends and relatives who are living with dementia (I can testify the carer will need support and friends, dementia in a partner is lonely, frustrating and terribly heartbreaking)

Learn more about dementia and maybe become a Dementia Friend

Volunteer and Fundraise…which brings me to my last thing…

© Lisa Shambrook

Bekah, my daughter, having seen the effects of Alzheimer’s first hand, has decided to do a Tandem Sky Dive and raise money for The Alzheimer’s Society. She is planning to leap from a plane and parachute on the 10^th September and needs sponsors to help her achieve her goal!

Please think about supporting her and those suffering with this tragic disease if you can. Any funds raised online on her Just Giving Page go directly to The Alzheimer’s Society, but she will need physical donations which go to the jump and the charity, so if your know her personally please ask her for her sponsor form and do it direct!

Thank you so much in advance, anything we can do to help those suffering and fund research and help is imperative and very much appreciated!   

Bekah’s Just Giving Page for her Sky Dive Sponsors
in aid of The Alzheimer’s Society – Just click this link

Visual Dare: Burden

Photo Source

It’s heavy, so heavy, a bone-crushing weight that sits squarely on his shoulders. It sleeps within his heart most days, but when it wakes – it screams at him in silence.

He works in the garden, tending, pruning and caring, the same as he does indoors. The wind whispers in the leaves and the soil warms his fingers as he works. He loses himself, out there beneath the sun, heat softly stroking his back.

Indoors, his heart threatens to explode within his ribs, his mind caught within the web of knowledge and his burden growing with every passing moment.

She smiles, and his heart swells and his eyes glisten. Today she knows who he is. Today, he grips her liver-spotted hand within his wrinkled fingers, and kisses her soft skin. He smiles back.

Tomorrow is another day, and he doesn’t know what it will hold. The weight sits heavy, and heart-breaking.

(150 words)

An entry for Visual Dare over at Angela Goff’s Anonymous Legacy…this picture spoke to me of my own father, and a burden of knowledge…

Check out the other stories…

Blues Buster: Through the Glass Darkly

© Lisa Shambrook

Erin let her long locks fall down her back as she released the clasp that held up her hair. She knew the ebony cascade always made him catch his breath, and she listened for his slight inhalation amid the silence of the room. The corner of her mouth lifted as his sigh escaped and she gently shook her heavy mane.

Her thoughts raced, tripping over each other as romance gave way to sensual, and her senses heightened.

She stood, bathed in silk, and swept her black hair to one side. Still with her back to him, she closed her eyes and let his gaze roam over her form. She imagined his touch, his kiss, his lips caressing her bare shoulder and she let the robe drop from her shoulder with anticipation as night’s chill tingled across her skin.

A rogue moonbeam cast its light across her vanity table and a small, dusty bottle glittered. Leaning forward she picked up the bottle and lifted the stopper. She cupped it within her hand and inhaled the dusky oriental scent. Memories flooded and images lit up her mind, and for a moment she was lost amongst the fragrance and sweet romance. Heady sensuality, deep kisses, lingering fingers and long lost memories slid through the moonbeam, and Erin could barely contain them all.

“Erin, sweetheart,” the young care worker’s voice interrupted her reverie. “Erin, why are you dancing in the dark?”

Then sunlight drowned Erin and her gasp filled the room.

“There, now we’ve got light, you don’t want to be wandering about in the gloom, now do you, sweetheart?”

Erin blinked, and the young woman in the crisp white uniform, took the dusty perfume bottle from her old, gnarled fingers. She replaced it on the dresser and gently guided the tiny, elderly woman towards her bed.

Erin shuffled softly, her feet encased in sheepskin slippers. She glanced back to the mirror on the dresser, and frowned at the old lady returning her gaze. She had no idea what the old lady was doing in her room, but she was tired, and the bed looked welcoming. Her care worker pulled back the covers and Erin slid between the sheets, her flannelette nightgown rising up about her legs as she settled into bed.

As the young women left with a clichéd au revoire and clicked off the light, Erin let her eyes get used to the sudden dark. For a moment fear shivered through her frail body and loss brought tears to her eyes, but as the moon smiled and gazed across the room, Erin relaxed.

Her hand brushed soft white hair from her face and the moonbeam danced across the bed. She brought her fingers to her lips and a wisp of scent, a dusky fragrance, ignited her mind. Shadows slid back through the walls, ghosts filled her mind and the cold night became warm as she moved a strand of ebony hair from her forehead and felt her silk nightdress cling to her skin. She smiled as his breath tickled her neck and bittersweet love returned…

(513 Words)

My story for Blues Buster over at The Tsuruoka Files…this song, Through the Glass Darkly by Annie Lennox brought with it a hint of sadness and loss, and with current familial circumstances, it inspired a poignant tale.