At Dementia UK, we know that many families are worried about loved ones with dementia being in hospital, or being readmitted, with care packages at home difficult to establish due to Covid-19. Here is Marilyn’s story about how her husband, David, was returned home by their Admiral Nurse, Kerry.
Home to Marilyn and David, her husband of 56 years, means a place of comfort for family and friends. After David’s diagnosis of vascular dementia in February 2018, their needs at home changed, but the meaning of home remained true to them. “I love being at home with David. It’s a different home now of course, but we have everything in place for him; this includes an indoor wheelchair to allow him to move round the house and a shower room to help with his mobility,” Marilyn says.
The pandemic made Marilyn realise even more the importance of being at home with David. “It’s a place where we can watch documentaries together, listen to music and have virtual chats with some of our closest friends.”
Marilyn and David
As David’s dementia progressed, Marilyn supported David through these challenges in their home life. “You make the best of what you have,” Marilyn said. “When David lost his ability to swallow, I was there to reassure him whenever he got distressed. When he lost his ability to drive, I supported him by driving him to medical appointments.”
A stay in hospital
After David contracted sepsis in December 2020, he was semi-conscious and getting more agitated. An ambulance was called immediately to their home at the doctor’s request.
David and his son, Chris
The coronavirus restrictions meant that Marilyn couldn’t be by David’s side as he was taken to hospital. Marilyn says, “I can honestly say that this was the tipping point for us. Given the stage of David’s dementia, he wouldn’t think to ring me – he just couldn’t. I also knew that it would be so challenging to find out exactly what was going on in the hospital wards due to Covid-19.”
However, there was someone who Marilyn could rely on at this challenging time – Kerry Lyons, Admiral Nurse for Royal Bolton Hospital, who Marilyn had previously met through a dementia support group.
At 8am, Marilyn was immediately on the phone to Kerry. “Without Kerry, I wouldn’t have known what was going on inside the hospital.”
Support from Admiral Nurse Kerry
After that phone call, Kerry was down on the hospital wards to find out where David was and how he was coping. Every morning, she would set up a FaceTime call for Marilyn to check in on David, even making sure that he was shaved and cleaned in advance of the calls.
The close bond which Kerry developed with David during this hospital admission meant that she could anticipate problems with David’s health whilst he was on the ward. “There was one period where Kerry told me that David’s health looked like it was deteriorating. Kerry’s intervention meant that he was taken down for an endoscopy, which revealed advanced sepsis. The next 24 hours would be critical according to the doctors. It was a worrying time of course, but with Kerry I had clarity at what was going on.”
David’s health soon stabilised through close monitoring of his fluid intake and by giving him antibiotics. However Marilyn and Kerry’s fear was that the longer he stayed in hospital, the more his condition would deteriorate without the love and support of Marilyn. “I needed to get David back, as I knew that I could care for him in our home after the sepsis treatment,” Marilyn said. “With Kerry’s knowledge of what home life was like from previous visits, I knew she would fight for our need to be home together again.”
Bringing David home
Kerry met with a social worker based in the hospital to make the arrangements to bring David home. She proved instrumental in arranging a care package with physiotherapists to aid his mobility, speech therapists to help with his difficulty in swallowing and nutritionists to help decide which foods David could eat. All of this meant that David would have everything he needed when he came back home, and Marilyn would have confidence to care for him.
For Marilyn the benefits of bringing David back home are so clear: “When David came home from hospital, he was on a stretcher, he couldn’t stand up, he couldn’t eat, and he couldn’t swallow – he couldn’t do anything. Within a week, he could sit up, then stand up, and then be able to walk with his Zimmer frame.
David back home
“Without Kerry, I think David would have been readmitted to hospital unnecessarily, or he simply wouldn’t be here.”
For Kerry, it is a privilege to support families like Marilyn’s in this way: “Admission to hospital, alongside a dementia diagnosis, can bring a unique set of challenges for families; a situation made more complex by Covid-19.
“The support I provide as a hospital-based Admiral Nurse ranges from helping hospital staff to understand dementia, particularly what the patient is able to do with the right support, to acting as a vital communication link to families, and coordinating care plans for a return to home.”
Now that David is home, both he and Marilyn can look forward to visits from their grandchildren, with Marilyn putting the wheelchair by the front door so that they can talk to their grandfather from there. They’ve also received several visits at home from Kerry since discharge, to help them avoid readmission to hospital.
“Kerry knew how much home meant to us and we are so grateful to her for bringing David back.”
Increasing the number of Admiral Nurses within hospitals is one of the key parts of our 2020-2025 strategy. Help us be there for more families who are going through similar situations like Marilyn and David.
When things get challenging or difficult, Admiral Nurses work alongside people with dementia, and their families: giving them compassionate one-to-one support, expert guidance and practical solutions
Dementia UK is here to help families live positively with dementia in the present, and to face the challenges of tomorrow with more confidence and less fear. But we need your help to continue our life-saving work