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.”
MacIntyre Shared Lives Carer
Shared Lives Manager