‘Our dad was no longer the man we knew and loved... it was alarming’
The family of a Co Antrim great grandfather were distraught when he was struck down by delirium and are now backing a new campaign to highlight the symptoms.
ALAN Mccausland’s previously fit and healthy dad Les (78) has come through a traumatic few months battling chronic obstructive pulmonary disease (COPD), a heart attack and then Covid, all with the added concern of delirium.
Restrictions on hospital visits meant his confusion was intensified as his family couldn’t be by his side to reassure him.
And as families continue to be separated from loved ones in hospitals, diagnosing delirium is becoming more difficult.
Delirium is a term used to describe a sudden onset of confusion and changes in a person’s behaviour and alertness.
The symptoms are often short-lived but can last for several weeks or sometimes several months.
While it is a common and serious condition it is also treatable.
Les’s family hope his grim experience will help highlight a new Northern Health Trust campaign to raise awareness not just among families, but also medical staff.
Retired civil servant Les, who lives in Antrim with his wife Kathleen (77), has three children Alan, Mark and Karen as well as nine grandchildren and two great grandchildren.
He enjoyed an active life prior to taking ill last December when he was admitted to hospital with a flare up of the chronic lung condition COPD.
His illness triggered delirium and it was just the start of an intensive period of illness for Les lasting many weeks.
His son Alan explains: “Dad has COPD but it never really bothered him until suddenly he was struggling with breathing last December and had to be admitted to hospital.
“While in hospital, he appeared to become very confused, which was really unusual for him. This had never happened before as he had always been so sharp of mind.
“He seemed to improve physically within a few days, and got home again. However, he was not himself and we were able to see how confused he had become, which was alarming for us.
“It was very frightening for Dad and for us. He was also very disorientated and kept asking for his mummy.”
As the family struggled to cope with Les’s increasing confusion, his physical health again deteriorated and he was re-admitted to hospital.
This time he was so ill he had to be ventilated in intensive care.
While being treated for his breathing difficulties, he suffered a heart attack and was transferred to the coronary care ward in Antrim Area Hospital.
His state of mind appeared to also deteriorate, as his son Alan recalls: “Staff described him to us as being very unsettled, agitated, trying to get home, climbing out of bed and experiencing falls, and saying things he would not usually have said.
“His behaviour was very out of character and it was very distressing and worrying for us to hear, as this was not the man we all knew and loved.
“We did not know as a family what was happening to him and why he was confused.
“The worry for us was made much worse as at that time as we could not visit him due to Covid-19 restrictions.
“Not being able to see him face to face to reassure and comfort him, and also console and assure us, was upsetting and we felt very helpless.
“The virtual visits were of some help; we were able to pick up on his confusion due to the things he was talking about and we realised how disorientated he actually was.
“We were worried about how things were from his perspective: Did he know what was happening? Was he distressed? What was he thinking about? What were things really like for him? Did he feel abandoned or alone?
“We were also wondering if he would ever get back to normal and how long would that be, we even wondered if he had dementia.”
There was another shock in store for the family when Les tested positive for Covid and because his COPD made him vulnerable to the worst effects of the virus, it was a terrifying diagnosis.
Les spent Christmas in hospital and missed celebrating his birthday at the end of December.
In total he was in hospital for 11 weeks, with his loved ones unable to visit. Thankfully he came through Covid but is still struggling with fatigue.
His delirium made a very difficult time even more frightening for the family as Alan explains: “Dad and Mum had been shielding throughout the pandemic because of Dad’s COPD and we were bringing them their shopping.
“It was terrifying to hear he had picked up Covid in hospital. At times we actually began to wonder would he ever get home again?
“We now know that his flare up of COPD, his critical illness, his heart attack, recurrent infections and then Covid-19, all contributed to, what we now understand as, a condition called delirium — an acute confusion caused by his underlying physical illnesses. We did not know what delirium was prior to this and the distress that it can cause.
“As a family, we needed to understand this condition further, as the symptoms seemed to fluctuate a lot; it was like an emotional rollercoaster, and we did not know what the expectations were.”
The family feel that the most crucial aspect of dealing with delirium is the communication between medical staff and relatives of the patient.
Alan says: “We felt that good communication was everything. It was important for staff to be continuously communicating with family; however, we didn’t know the right questions or what we should have been asking at the beginning.
“We felt it was important for staff to know what Dad was like
‘We were worried he had dementia and if he felt alone’
prior to his admission to hospital, to ensure assumptions weren’t made that this was how he always has been.
“Staff took time to get to know Dad, his interests, hobbies and family life and this had a positive impact and made a huge difference.
“They were able to use this personal information to engage him in conversation and distract him from things that were causing him distress.
“He liked having a clock available and being able to read the daily papers.
“It is so important for staff to include the family in discussions around care and any decisions that are required.”
When Les was eventually able to leave hospital just a couple of weeks ago, the delirium was resolving but he still required time to make a full recovery.
He was lucky enough to get a place in a residential home which is dedicated purely to treating people with delirium.
At The Roddens Residential home in Ballymoney he received excellent support, with his care focused firmly on the things that mattered to him.
His son Alan adds: “The care at the Roddens was fantastic and dad loved it there. They knew he liked gardening and got him soil and to pot plants for them.
“He continued to improve and his confusion resolved well, and we were delighted that he was finally able to return home again recently to slowly get back into his usual routine and enjoy being in his own surroundings and with his family.”
The Northern Trust has publicised a number of resources for families to help identify patients who may be suffering with delirium.
The sooner the condition is picked up, the sooner it can be treated.
In a bid to raise awareness, the Trust has developed posters and leaflets, an animation and ‘This is Me’ leaflet from Alzheimer’s Society and RCN which captures the personality of a patient and can highlight any changes.
People who are over 65 years of age, those with previous memory problems, anyone with an acute illness or infection or those who have a broken bone are more prone to developing delirium.
Nicola Loughlin, delirium management co-ordinator with the Northern Trust, explained the need for the resources: “Delirium is a fairly common condition but it can be difficult for hospital staff to identify as they often don’t know how a patient normally presents.
“We rely on visitors and loved ones to let us know that their family member seems more confused or withdrawn than usual and that can prompt a diagnosis of delirium.
“However, with the current restrictions on visiting it makes it much more difficult to make those links with family members and quickly identify anything out of character.”
When someone is identified as having delirium there are a number of measures that can be taken to ease the condition and return the person to their normal state of mind.
Nicola explained how the Trust hopes to work with families: “We have made information available online and in printed resources that visitors or family members can access and are working to increase awareness of the condition.
“The materials will work to close the gap that visiting restrictions have resulted in and ensure staff have that valuable input from families.
“Often relatives can feel that they don’t want to be annoying staff but it is really important that they speak to a member of staff if they feel their loved one is not acting as they normally would.”
For more information about delirium or to access the materials available go to www.northerntrust. hscni.net/services/geriatricelderly-medicine/delirium/
‘It’s vital families speak to staff if they are worried’