St Leonards mum unable to see terminally-ill son on what may be his last birthday

A St Leonards mum who was unable to see her terminally-ill son on what could be his final birthday has been unable to visit him for the last four months.

Sam Adams is in the latter stages of Huntington’s disease and is currently residing at the Mulberry House care home, in St Leonards.

On Sunday, he celebrated his 34th birthday but, due to a ban on care home visits, his mum Ruth, 67, of Sedlescombe Road South, was unable to give him a hug and had to drop his presents and cake at the door.

Earlier this week the government announced that, from March 8, one person will be allowed to visit a care home resident for 30 minutes, in full PPE, but will only be allowed to touch their hand.

Ruth Adams, Sedlescombe Road South, St Leonards. SUS-210225-130516001

However, Ruth says as this is guidance, some care homes may decide only to accept visitors once they have had their second vaccination.

“In that time my son, I think, will have given up,” said Ruth. “To try to express what this has done to us as a family is beyond words. For me, I don’t think I’ve had a single day or night when I haven’t cried. I certainly have horrendous nightmares, I get very little sleep and I don’t eat properly.

“I constantly worry about Sam’s journey and the fact that I’m not there with him on it.”

Sam was diagnosed with Huntington’s disease – a progressive condition which often described as being the equivalent of having Parkinson’s, Alzheimer’s and Motor Neurone Disease all in one – eight years ago. He moved into Mulberry House from supported living in June 2019.

Ruth Adams' son, Sam. SUS-210225-130556001

After five weeks, he was admitted to hospital with urinary sepsis. From that point on, Ruth, Sam’s dad and his sister Hannah, 31, took it in turns to spend six hours a day with him.

That was until the country went into a national lockdown and all care home visits were banned.

Ruth added: “At this point, although Sam couldn’t walk well he was still reasonably verbal and he was a really happy, humorous, twinkly-eyed young man. During the first lockdown we were unable to see Sam at all and there was a deterioration but because he had WhatsApp and we were able to take calls – myself and his dad – all through the day, we managed to get through it and at the end of that lockdown we had a community day in which we saw Sam one day a week for about five hours in my garden.”

These home visits, assisted by Mulberry House, continued until late November when, due to the high infection rate across Hastings and Rother, the local director of Adult Social Care in East Sussex told care providers to remain closed to visitors, except for end of life family visits.

Mulberry House, St Leonards. SUS-210225-130606001

In December, the care home had to close its doors to visitors and stop home visits after several residents tested positive for Covid-19.

Mulberry House says it is still classed as experiencing an outbreak of Covid-19 until all residents have tested negative four weeks after the last confirmed case. It is hoped all residents will test negative this week and the home’s ‘outbreak’ will be formally over.

Since face-to-face contact stopped in November, Ruth said Sam has deteriorated even more, lost a stone in weight and is now ‘virtually non-verbal’. He also tested positive for Covid-19 in January, but was asymptomatic, and may have antibodies.

Ruth is now hoping to change the public’s perception of the ban on care home visits and has joined forces with other affected family members who are fighting to get back to visiting their loved ones.

She added: “I’m not alone. There are thousands and thousands of us in this same situation.

“Through Rights for Residents, which is a Facebook group founded to help get our rights of being with our loved ones back, we have all stated that there has to be a law that will lead forward and at the moment Harriet Harman (Labour MP for Camberwell and Peckham) is looking at the human rights angle.

“Anybody who sees this who has somebody in a care home will know how I feel and how this year has been.

“And for those of you who don’t, I hope you are never in our shoes or have a loved one so far away from you, and yet so very near. He lives literally down the road.”

A spokesman for Mulberry House said visiting will commence on March 8, in line with government guidance, as long as the home is officially confirmed as being out of its outbreak.

Tara Cross, manager at Mulberry House, said: “If just one of our residents tests positive for Coronavirus, we have to stay in a state of outbreak for 28 days. The last positive test result at Mulberry House was January 25 and we are in the process of testing all of our residents again this week. Hopefully, if we have no positive results, the outbreak will be over.

“We have huge sympathy for our residents and their family members. It’s a distressing time for everyone, but we are here to help in any way we can.

“We appreciate that so many families nationwide are having to make so many concessions to normal visiting to help protect everyone in care homes.

“Thanks to the fantastic progress of the vaccine rollout, we are sure that this will help us all return to more normal arrangements very soon.

“Like the rest of the country, we are thrilled to hear that care home residents are to be allowed one nominated indoor visitor from March 8. And as long as our current outbreak is confirmed as over, we look forward to welcoming visitors to Mulberry House once more.”