Sue and her mum, Ann, were as close as you could be. Even after Sue got married herself, they lived five minutes away from each another and would see each other every day.
As Ann got older, she needed more help getting up and dressed. Sue arranged for a carer to go in twice a day and give Ann a hand.
Many families with dementia feel like they are not being heard. Often, they don’t know what their options are, and aren’t sure what questions to ask to get the best care for their relative.
Our new video looks at how our dementia specialist Nurse, Julie, helped Sue and her mum Ann come back together when it was looking impossible.
“One night, in 2016, mum had a bad fall,” said Sue. “She’d tried to get onto the commode and didn’t make it, falling and cutting her head quite badly. When the carer came in the morning, mum’d been lying there all night, freezing cold on the bedroom floor.”
Ann was taken to A&E, and admitted to hospital. Sue said: “When the time came for her to be discharged, they told me she’d have to go to a nursing home, for her own safety. Neither of us wanted her to be in a nursing home, but I think even she felt that she couldn’t cope anymore.”
Ann moved into the care home for a six week trial period, at the end of which, she asked to go home. “She was only home for a few days when she fell again,” said Sue, “and she was taken back to A&E.”
This pattern established itself, with Ann going into hospital and being discharged into a different care home two more times. And by this point, Sue noticed that her mum’s memory was deteriorating.
Ann was assessed and diagnosed with dementia, ahead of a move into her third care home in just 18 months.
Sue said: “Mum’s behaviour in that third care home became so much worse. She is not an aggressive lady, but she started to become really aggressive there. I think it was fear – she was frightened, terrified.”
Moving into unfamiliar surroundings can be very distressing for a person with dementia, and Ann found the transition very difficult. “She would shout out, or lash out,” Sue said. “And when I went to visit her, when it was time for me to leave, she would shout out even more – she would get so upset.
“I felt so guilty. Mum would ask me why she was there and I didn’t know what to say. I felt like it was my fault. The care home asked me not to go for a while, while she settled in. They said they would call me when things had calmed down. But that call never came, and I didn’t see my mum for months, from seeing her every single day. I felt like they’d cut off my right arm.”
Admiral Nurse Julie Green met Ann during a visit to the care home, as part of her role with Farleigh Hospice. When she saw Ann’s levels of distress, she called Sue to invite her to meet her at the care home.
Connections and relationships
Julie said: “When I saw how happy Ann was to see Sue, I knew that the connection between them was the way we were going to help improve this situation.”
Sue said: “I saw the relationship that mum had with Julie and it was lovely. Mum’s face lit up to see her. Julie has such a calm way about her. She can always calm mum down, and she suggests things to me that help me to calm her down too. I knew then that I finally had someone that I could talk to about mum.”
Ann’s needs were so great by this stage that she required a full time carer to look after her in the care home. Julie saw that it would be possible to extend that set up to her own home. She began conversations with the care home, Continuing Healthcare and other professionals to find out whether Ann could go home.
“At first, I was met with a lot of scepticism,” said Julie. “I was asked: ‘what are you thinking?!’ but I could see it was possible, and I genuinely believed that it would be the best outcome for both Sue and Ann. So once I made that case, more and more people started to come on board and work collaboratively with me to make it happen.”
“Julie phoned me and said: “How would you feel if your mum could come home?”” said Sue. “And I didn’t know what to say – I cried. And from that point, it was only a few weeks until mum came home. Julie had all the conversations with everyone to make it happen. She worked so hard, and she was talking to me all the time, on the phone, in person, in the home, telling me what was happening.
“And when we brought mum home, her face just lit up. As soon as she got to the door, she just lit up, like a different person. It was lovely.”
Julie said: “All of the behaviour that had been concerning the care home, the shouting and the swearing, it was all resolved within days of Ann returning home. And the most important thing now is that she doesn’t get back in to that loop of ever going back to A&E and into residential care, so we have an Advanced Care Plan is place to ensure that she receives any medical treatment and ultimately stays in her own home.”
Sue said: “Mum is a completely different person to who she was in the care home; she’s happy. I walk up to the front door and I can hear her laughing and singing. I cannot explain what a gift Julie has given me by bringing my mum home.
“If I need help, she’s there for us”
“If I’ve ever got a problem, I call Julie. If I need help, she’s there for us. She is my lifeline. She is worth her weight in gold. Mum is 87 now and she’s getting tired, she is more sleepy now. I know that she wants to die in her own home and because of Julie, she will be able to. Whatever time I have left with my mum, it is a gift from Julie, and it is a joy.”
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