On Living With Illness – Steph’s Story

Today I would like to welcome Steph to the blog, with one of the most moving and powerful stories I’ve read. I know Steph online via the interiors/renovation community and we were in touch a little while ago about her featuring in the series. Life has taken a sad turn and she reached out to ask if she could share something different to her original thoughts. Steph’s Mum has been diagnosed with mixed dementia and Alzheimer’s and here in an emotional read, she tells her story. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.

(If you would like to see where it all began, click here. Thank you so much for your support, if you would like to share your own story please email me on booandmaddie22@gmail.com)

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I Am : Steph, 33

Home Is: Manchester

I Do: I work for the police

Find MeInstagram 

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A mother’s love is the fuel that enables a human being to do the impossible

In the interests of complete transparency, I reached out to Lins at the start of the year with a view to sharing my own story of living with illness, but days after I did, something far bigger bulldozed it’s way into my life and I think I’m just about ready to share my story.

According to the Alzheimers Society, 209,600 people will develop dementia this year, that’s one every three minutes.

It absolutely feels like that’s all it took to turn my life completely upside down.

I’ve known for a while that my mum was forgetting things – in fact at one point I was seemingly the only one to notice. If I’m being honest, it was very frustrating and even annoying at times.

Then what felt like completely out of nowhere, in January this year my lovely mum just did not know who her family were anymore.

It’s really hard to actually put into words how this initial experience and all that’s followed has changed my entire world, but I knew my life was never going to be the same from that moment onwards. Why my mum? Why was she deteriorating so quickly? Why now?

Her behaviour and emotions become so unpredictable and could flip from one second to the next. 

After a stay in hospital to try and sort medication, mum was given a diagnosis of mixed dementia and Alzheimer’s. Whilst it didn’t surprise me, it still broke my heart into pieces to actually hear the words but I was so thankful to finally get some answers for my mum so we could get the support she desperately needed.

My amazing, independent, absolute rock of a mum was disappearing before my eyes. She had changed into a scared, anxious shadow of her former self and there was nothing we could do about it.

It’s hard seeing my mum struggle with these changes herself. Sometimes she just sobs for hours and pleads with us to help her. It’s even harder watching my Dad, her husband of nearly 50 years, be absolutely lost for words at the situation he’s found himself in and feeling completely helpless.

With dementia, you never really know what you’re going to face each day. Will they be happy, sad, anxious, violent? A mix of every possible emotion that could change from one minute to the next? Will they ask repetitively to go back to their childhood home or see their parents who passed away many years ago?

As a carer, you have to decide what is in their best interests – whether to break their hearts all over again by being honest or whether to take the brunt of the crippling pain of feeling like you’re lying to your own mum over and over again.

Someone once described their experience of this disease to me as mourning the loss of someone but while they’re still physically here – and I literally couldn’t describe it any better. I’ve cried bucket loads and really struggled with accepting that no matter how much effort you put into the care of someone with dementia/Alzheimers, you just can’t stop the course of events. It’s like when you’re running down a really steep hill and you’re desperately trying to slow yourself but it’s just not possible, all while absolutely panicking that you’re going to fall head first at any second.

One of the most difficult things I’ve found is actually talking about it. It’s such a unique disease to each individual, it’s so difficult and so personal to explain. A lot of people seem to think dementia is just what happens when you get old. That medication can cure it. That a healthy lifestyle can stop you from getting it. All of these views are entirely incorrect and it hurts to hear them. My mum is otherwise fit and healthy – doesn’t drink, smoke etc – nothing she has ever done has contributed to her getting this horrible disease – it can happen to anyone.

My wonderful mum has been robbed of her old age, pottering round the garden and playing with her grandchildren – that was how it was supposed to be. This terminal disease that affects so many, yet is so misunderstood has taken that from her and from us. 

Fast forward a few months and we’re doing our absolute best to keep her comfortable, happy and most importantly shower her with as much love as is possible to give in the time we have left with her.

You see the thing is, when I was learning to read, write, learn my times tables, learn to drive (the list is endless) my mum was always there – my number one cheerleader. She was always kind, loving and caring – but most importantly she was patient. She never once shouted at me for getting it wrong and was always full of encouragement until I suceeded. Now it’s my turn to be the person that she taught me to be. A total role reversal – now I feel like a mum to my own mum.

I have so much to be grateful for – I feel like the luckiest person in the world to have had a mum like mine. She’s still with us, I’m still able to give her a massive hug and tell her how much I love her – something I know so many people aren’t able to do.

I seek comfort in the fact that my mum is transitioning to a place where she will be completely oblivious to what’s happening to her – this is such a blessing.

I would take the pain of going through this as a family over her knowing what is happening to her all day, every day.

I vow to make the most of every moment and create as many wonderful memories with my mum as possible. I will love her long after she forgets that she loves me.

For anyone embarking on this situation in their life, just know that you won’t come out of this the same as you were when you went into it.

But don’t let it be all-consuming. I want to look back and be proud of the love and care I gave, just like my mum did for me. It’s only the warmth and experience of her love for me that has given me the strength to carry on – I will be her number one cheerleader forever.

Whilst no one can’t change the outcome of dementia, I really believe that with an abundance of love and patience, we can change the journey.

Thank you so so much to Steph for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Steph’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.

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8 Comments

  1. Pauline
    June 19, 2020 / 11:40 am

    Thank you so much for sharing your story Steph.
    My mum was diagnosed with Alzheimer’s at the age of 55, thou being young getting a diagnosis was a struggle. Doctors thought it was stress related, but we knew as a family that it had started a few years prior. My mum also cared her mum who had Alzheimer’s.

    She is now 61, her condition had deteriorated dramatically. She’s no longer knows her children, or even how to speak, thou occasionally a swear word still comes out. Thou she still has mobility and could give Hussain bolt a run for his money.

    It’s is such a cruel illness and at times I can feel completely robbed of not having memories with her that I feel I should have at this point in my life, and for her.
    I find it hard to remember what she was like before this disease took hold. But caring for someone who has cared for you all your life is one of the greatest things you can do. I am greatful to have been able to experience what Alzheimer’s has gave us.

    Thank you again.

    I hope you are after yourself aswell as much as your are with your mum as I know how straining it can be.

    Sending love to you and your mum. And I hope you find joy in all those new memories.

    Pauline xx

  2. Fiona
    June 19, 2020 / 12:17 pm

    Thank you so much Steph, for such an honest insight. Wishing you all the best xxx

  3. June 19, 2020 / 12:47 pm

    Wow. This has broken me. Your line “I will love her long after than she forgets she loves me”is beautiful.

    X

    • Lins
      Author
      June 20, 2020 / 11:52 pm

      It’s such a beautifully written piece isn’t it? Thank you Clare x

  4. Hannah
    June 19, 2020 / 4:56 pm

    Thank you so much for sharing this! My Nanna had Dementia and it was crippling, the reference to it feeling like you’ve lost someone when they’re still there sits so true with me.
    Sending so much love xx

    • Lins
      Author
      June 20, 2020 / 11:51 pm

      Oh Hannah I’m so sorry to hear this. Thank you for taking the time to share and I’m glad Steph’s post resonated with you. She was so passionate about wanting to share to help others x

  5. NikkiG
    June 19, 2020 / 5:28 pm

    I’m so sorry that you and your family are going through this. Thank you for sharing your story with us. X

    • Lins
      Author
      June 20, 2020 / 11:50 pm

      Thank you so much Nikki for your kind comment x

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