Marion remembers Christmases with Ian as being incredibly calm; a time to have drinks with friends, spend time with the family in Cornwall and Yorkshire and decorate the Christmas tree with their son and daughter. For Marion and her family,it will be their first Christmas without Ian. “We’ll miss his positive, laid-back outlook as well as his gentle and caring nature,” Marion says.
Meeting back in 1985, they realised they had a lot in common including a shared love of cycling. They got married in 1992and went on to have their two children, Andrew and Emma.
“Ian always had time for the children; helping them with their homeworkand driving them to activities. He was a very patient fatherand never raised his voice to them or anyone,” Marion mentions.
However there were slight changes in the family dynamic as the children moved into their teenage years. When Ian started forgetting how to use the washing machine and the cooker, Marion had no cause for concern. She put these moments down as stressesin his line of work in the public sector or momentary lapses of judgement; there didn’t seem to be any other explanation for someone as young as Ian.
Marion realised that there was an underlying problem during a family holiday at the height of the 2012 Summer Olympics. It was when Ian couldn’t remember directions to a shop which he had been to a number of times.
“I’d say to him that he was forgetting a lot. The look he gave me signalled his worry that I was going to find out what was wrong.” Soon after, it was announced that Ian would be made redundant at work at 54; a job which he had for over 20 years.Marion never knew why from Ian but in hindsight, she could hazard a guessthat there were issues with his performance.
The route to a diagnosis
Finally, with symptoms increasing over the past year, Marion convinced Ian to go to the doctor. The GP asked Ian a series of simple questions; the majority of which he couldn’t answer correctly.The doctor referred Ian to have an MRI scan and further inconclusive tests.
“Ian was booked in for a hospital appointment with more tests, where he was officially diagnosedwith young onset Alzheimer’s in 2013 at 54.It left usdevastated,” reflects Marion.
The first meeting with Admiral Nurse, Sharon
Marion did not know what support she was entitled to at this difficult time. Added to this was the pressure of handling Ian’s rapid deterioration alongside supporting her son and daughter, who were 13 and 18 at the time of diagnosis. They began to wonder how this would impact on all the things they did with their dad, in addition to family life.
It was at this point that their Admiral Nurse, Sharon, came into their lives after the mental health team at the local hospital passed on Marion’s contact details.When Sharon emphasised to Marion how important it was for her to have time for herself and to keep well, in order to support the family and care for Ian, there was an instant bond.
“I suddenly felt at this moment that things would become easier in a very difficult situation. It was clear to me that her advice was coming not only from the right place emotionally, but practically too,” Marion recalls.
Sharon helped Marion with a range of issues, and her depth of knowledge in dementia care was a lifesaver for Marion to continue caring for Ian.This included telling her about her entitlement to Carer’s Allowance in a complicated system which still places the onus on family members to find this information out for themselves. However it was Sharon’s focus on Ian’s own needs which really shone through.
Ian had been a passionate driver and it was Marion’s wish that he could continue to do this for as long as he was able. Sharon understood this and told Marion that Ian could still drive if they made contact with the DVLA and was given the go ahead by the doctors. It wasn’t long after thatIan was given a one-year licence and the family embarked on a trip to Snowdonia at Ian’s insistence.“Ian was on top of the world – quite literally after we climbed Snowdon as a family.It was a wonderful lasting memory for us,” Marion remembers. “Sharon knew what driving meant to Ian, how happy it made him, and in that, how happy it made us.”
A lifeline at the hardest moment
Marion always knew that Ian’s Alzheimer’s would progress, and that he’d soonno longer be able to do the things he loved. In 2017, Ian’s lack of personal grooming, having to cope with him running out of the house and his aggression all became too much to bear.This was a huge contrast to the kind and gentle family man.
Sharon advocated for help and supportfrom doctors and the local mental health teams. After home visits, they all saw how difficult it was for Marion to continue caring and supporting Ian. Theirconclusion: Ian needed to be sectioned and admitted into hospital.
Sectioning was something that Marion never thought could happen within her family and it felt like Ian was being torn away from them. However Sharon was there to shine a light.“Ian simply became very difficult to live with. At a point like this, you need someone to say that it’s ok for him to have professional care and that you have done everything that you could. It was a mindset that I couldn’t have possibly had without her,” Marion says.
Making the transition into care
Marion admits she would have been lost without Sharon helping her find a care home for Ian following discharge.“After talking to Sharon, I could see how important it was to have visits from the mental health teams, staff training in dementia care, and if there’d be space for Ian to go outside – her knowledge of what was required for Ian’s care proved essential.”
Marion would visit Ian in his care home and she recalls with fondness how he would beam, recognising her whenever she visited. This meant so much to Marion as he had lost his ability to communicate verbally. They’d go for walks together in the grounds. There was even enough space for Ian to ride on his bike. “The minute he sat on his bike his whole demeanour changed and I could see that the biking lover in him was still there – he was still cycling before Christmas 2019,” Marion mentions.
That changed however as the care home soon stopped visits to family members in light of the current coronavirus pandemic. Suddenly not seeing family and friends took an emotional and physical toll on Ian; something made harder tobear as Ian couldn’t understand the situation. “Four weeks after the Prime Minister announced lockdown, sadly Ian died, at the age of 61. My son, daughter and I are grateful that we had the chance to hug him the day before, but we wanted to be allowed to visit him sooner.”
Through the support of Sharon, her Admiral Nurse through Dementia UK, Marion could care for Ian at home for as long as possible, and now realises the importance of holding on to the good times with Ian and the family.
Remember a Star
Marion is remembering Ian through our Remember a Star campaign this Christmas so that more families have access to the vital support of Admiral Nurses like Sharon. Who will be your Star this Christmas?
The Admiral Nurse Dementia Helpline is for anyone with a question or concern about dementia, including Alzheimer’s disease. our specialist Admiral Nurses have the knowledge and experience to understand the situation and suggest answers that might be hard to find elsewhere
Young onset dementia (YOD) is defined as dementia diagnosed under the age of 65. It is also referred to as ‘early onset’ or ‘working age’ dementia. There are an estimated 42,000 people with young onset dementia in the UK