I wish….

Moira has been living with me for about 3 years now and I have known her for much longer. In 2014, Moira was diagnosed with the onset of dementia. For the first 12-18 months, things continued as normal with just small behavioural differences and little accidents – knocking things over etc. In the last 12 months, the dementia appears to have progressed. I have found more and more that I have had to continue to concentrate on Great Interactions with Moira whilst coping with my own feelings and sadness about her diagnosis and the inevitable progression. This is an example of how our interactions have changed.

It was about 6.30pm and we were leaving the pub we regularly go to. We had been for tea. Moira and I know the bar staff and it’s a place where she feels comfortable, it hadn’t been too busy and I felt quite relaxed, we had had a nice time. As we were finishing, I noticed Moira’s face changed. It was as if she was behind a glass. We quickly left and got in the car to go home.

In the car, Moira asked in an urgent panicky way, “Where’s Tina?” I reassured her, “I’m right here, it’s me, Tina”.
Moira said, “No you’re not, I want her now, get her on the phone.” She became really upset asking repeatedly and no amount of me calming her would help.

So a bit desperate, I pretended to pass Moira a phone. “Here she is, she’s on the phone.”

Moira took it from me and held her hand up to her ear as if she was holding a phone.

Moira:“Tina is that you?”
I turned my head slightly to the side: “Is that you Moira B? It’s Tina”
Moira: “She’s taking me away from you.”
Me: “No, she’s bringing you home to me.”
Moira: “I want you to come and get me.”
Me: “Let her bring you home.”
Moira: “No I want you to come and get me.”
Me, pacifying: “Ok, ok, I will.”

Moira turned to me, handed me back the “phone” and I pretended to take it.

Moira: “Pull over; she’s coming to get me.”

Luckily by this point we were very near to home. I said, “We’ll just turn off this main road onto a quieter road.” I parked the car outside the house and got out, ran round to Moira’s door, opened it, she gave me a huge hug and said, “Thank God. I didn’t know where you were. I thought she was taking me away.” I hugged Moira back and said “We’re home now, let’s go in.”

Supporting Moira through these challenges is both a privilege and heart breaking, and at times can be scary for us both. I have to keep remembering to be creative in my interactions, to not always try to correct Moira but to support her in whatever reality she is experiencing as this can make the difference between her becoming frightened and upset and staying calm and feeling safe. We have support from the Dementia Project and from the Health team. We have support from being part of Shared Lives and the other Shared Lives carers who support Moira when I need a break.

On Saturday night we came out of church and the sky was pitch black except for the moon and one star.

Moira: “Look at that star. We can wish on that.”
Me: “What’s your wish?”
Moira “I wish this dementia would just go away.”
Me: “That was my wish too.”

Tina
MacIntyre Shared Lives Carer

With

Kathryn Yates
Shared Lives Manager

Comments

  • Wendy Cook says:

    Tina this made me feel very sad and happy at the same time. Happy that Moira is in your safe hands you understand and know her so well. 🙂

  • Belinda Bradley says:

    Wow. What a moving account. It is so amazing to know that Moira has support from someone as loving and creative as you Tina and so pleased you feel supported on this journey too.

  • Fay Walker says:

    What a moving blog. It is really heart breaking to see the changes in Moira but it is wonderful to see the care and support she is surrounded by from people who truly care about her.

  • Jessie Harrison says:

    This is so beautiful Tina, you should be so proud of how you are helping Moira. Despite how sad and heart breaking dementia is, it sounds like you are giving her all the comfort and love that she needs.

  • Lyn Forster says:

    What a lovely account

  • Tess Marshall says:

    Ah Tina, such a moving description of the difficult changes you are supporting Moira through. You both need to be so courageous at this time.

  • Linda Powell says:

    I have to say that I became quite choked when reading this, I have never worked with anyone who as Dementia at the present time, however it must be heart breaking to watch someone disappear because that is what it looks like to me, especially being an ‘Emmerdale;’ fan.
    I take my hat of to you both!! Keep up the good work Moira and love to both.

  • Emma Killick says:

    Oh Tina – every so often one of these wonderful weekly blogs really hits me full on! This week is one of those week’s so thank you for sharing this and for your honesty, kindness and compassion. For increasing numbers of people we support dementia is part of their reality and therefore our reality – I’m glad you feel supported and have people around you to support.

  • Lynn Kennedy says:

    What a profound story and what a wonderful support you were to Moira, Tina. Supporting individuals with dementia in the right way is so important and this is clearly a great example of this.

  • Marina Clark says:

    thank you for sharing this – how scary it must have been for Moira to think she is being taken somewhere, glad your quick thinking has helped her feel safe again

  • jackie Lynch says:

    Inspirational

    – and fast thinking in a difficult and sensitive situation

  • Carol Davison says:

    Very touching BLOG Tina. As you say, your interactions are being very creative and will continue to be so. And I am sure I speak for many when I say we understand where you are coming from when you mention your own emotions as well as Moria’s. The network of support and care sounds fantastic for everyone involved on this journey.

  • Ollen Dube says:

    What an amazing true events of life and the way we go this far to care and be part of the people we support like Moira. To Tina I say you are just great and keep the good work flowing.

  • Darren Bowen says:

    Wow – reading this filled me with great sadness in my chest, you know the sadness that grips your chest tighter and tighter as you think about it? However, then I looked at the photo of you both smiling and laughing without a care in the world! It is these times,’the good times’ we must all think of when we are supporting people with debilitating illnesses.

    Reading your blog, it is clear that you are well equipped to handle the road ahead and I wish you both the very best for the future xx

  • Andrea Parr says:

    Tina, Thankyou so very much for sharing this blog with everyone. It’s such a ‘touching’ account of reality and the challenges faced by yourself and Moira which represents just how others may be feeling. I’m sure it will inspire others too to think creatively about the support needed ‘in the moment’. Thankyou Tina, you have inspired me today 🙂

  • Jackie Alexander says:

    Thank you for sharing this Tina, it is very moving. You kept calm through this and interacted with Moira so she felt safe again.

  • Karen Duggan says:

    What a truly wonderful story Tina for so many different reasons. Supporting the person with their reality, created by the impact of dementia, can be especially challenging for those around the person with dementia. The way you supported Moira is testament to how well you know her and what makes her feel safe, as much as your knowledge about dementia and the impact it has on Moira. I found this particular situation inspirational and I hope it really helps others be creative in their support to join the person living with dementia reality at that moment. The wish upon a star probably also reflects most peoples wishes about dementia. I wish you and Moira many happy times together, and just love that photo of the two of you!

  • Sarah Ormston says:

    Thank you so much for sharing this Tina!

    A truly heartfelt and touching story that really resonates close to my heart.

    Sarah

  • Joanna Booth says:

    what a lovely account Moria has been truly blessed with your lovely support and care you have for her

  • Jeremy Bugden says:

    Your words Tina, about Moira; “it was as if she was behind a glass” really said it all for me. It can be quite heart wrenching to see someone you have known for three years start to forget the many things we so often take for granted, especially the precious memories of people and places. You were quite inspirational at the time of “the in the moment” support you needed to give. Well done and thank you for sharing the Great Interactions Blog.

  • Sandra says:

    Hi Tina
    What a moving story- thank you for sharing.

  • Nicola Payne says:

    Thank you for sharing this Tina…. When I saw you in Warrington you shared this story with me and the impact it had on me then was enormous, You dealt with this in such a creative way which eased Moria. This story will always stay with me and I am so glad its in a blog for others to read!

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