Barry shares his difficult journey and together with Nial Joyce of Clifden House Dementia Care Centre, offers good advice for others who may be in a similar situation.
February 9, 2018
In 2015, Alison L at just 71 years old was diagnosed with a rare form of dementia, known as Posterior Cortical Atropy (PCA). Her husband of 47 years, Barry, who lives in Newhaven, describes the journey they have been on and the effect this has had on him.
Barry’s family first really noticed a change in Alison when she started to use the wrong words in sentences. However, Barry said that it was in fact some time before this that he had noticed a change in Alison’s gait, that developed into a stoop as time progressed.
This is not something people automatically link to dementia but research confirms that changes in gait, such as slower walking or a more variable stride and rhythm, may be early signs of mental impairments that can develop into Alzheimer’s before such changes can be seen on neuropsychological tests.
“I knew Alison was seeing our GP so in the summer of 2014 I spoke to her doctor separately about my concerns with Alison and asked the doctor to look out for the same signs I had been noticing.”
Then Alison started to have falls and one time outside she fell onto her head and blacked out.
On this occasion she was taken to see a GP, and the following day when Alison had an emergency dental appointment to repair two front teeth that she has broken during her fall – the dentist advised her to revisit a GP as soon as possible.
It was only after further visits to the doctor, that Alison finally got referred to a specialist assessment centre in October 2015 where a FDG- PET scan confirmed the devastating diagnosis that Alison had the rare PCA form of Alzheimer’s. [A PET scan uses a small amount of a radioactive drug or tracer, to show differences between healthy tissue and diseased tissue].
“This is when our lives changed,” said Barry.
Early in her career, Alison moved to Eastbourne from Hertfordshire to teach at a local private school. This is where she met Barry and they married in 1970. Alison and Barry had two daughters who now live in Sussex and Oxfordshire.
As well as being a devoted teacher, Alison was a professional musician, providing piano accompaniment to professional singers. As an accomplished flautist she played in several orchestras.
When Alison was first diagnosed with signs synonymous with Alzheimer’s, neither of them could take it in or really understand why it had developed at such an early age. Alison had always led a very active lifestyle, she loved rambling, had a good diet and kept her brain active, mainly through her music.
When the disease first manifested itself, as Early Onset Dementia, Barry felt as though his concerns for Alison were not being heard. He said he found it a struggle to get the tests and support that were needed to help cope with this traumatic change in their lives. His main issue was that there was no clear process or advice available. “This support came much later – only after I had pushed and pushed for help and advice,” Barry said.
For several months, Barry cared for Alison at their family home, but her condition started to deteriorate. Falling and injuring herself became a more frequent occurrence and it became increasingly difficult for Barry to cope – both physically and mentally.
In 2015, due to stress and anxiety Barry himself collapsed in the Eastbourne town centre and was taken to hospital.
“Looking after Alison on my own started to have an massive impact on my own health. It was a very challenging time but when Alison became immobile I knew I had to look for outside support. This resulted in Alison going into emergency respite care.
“I know from the start that this emergency care was not the best option for either Alison or me, so my eldest daughter and I decided to investigate other homes and specialist care providers. We deliberately visited several care homes at their busiest time of day (lunch-time).
“As soon as I walked into the dementia care centre in Seaford, I had a really good feeling about the place. Clifden House is a specialist in dementia care and was totally geared up for Alison’s condition. For the first time in a long time, I had a sense of calm. I just knew that Alison would be happy here – I even got to choose her room. Although nursing home fees are a worry for everyone in the UK, we had reached a point when professional care and support was essential.”
Nial Joyce of Clifden House said: “It is never easy making the decision for a loved one to go into care. There are very often mixed feelings of guilt and relief, worry and peace. Whatever care home people chose, it is very important that residents treat it as their own home.
“Due to Alison’s rare form of dementia, staff need to be very adaptive to situations. We know a lot about Alison’s past, particularly her talent and love of music so we endeavour to support and encourage this aspect. It brings joy and comfort.”
Barry’s career was in plastics and polymer engineering. Since retiring and receiving Alison’s diagnosis, he has become a practicing Buddhist. He credits the Buddhist philosophy with giving him the strength and peace he needs to cope with the trauma of ‘losing’ his wife.
Barry said: “Even though I consider myself to be in ‘pre-death bereavement’, I have come to accept things as they are and to value the time we have left. It has also allowed me to regain my health and have another focus.”
In his spare time, when he is not visiting Alison at Clifden House, Barry does a lot of research about Alison’s form of dementia.
“I take comfort in gaining a deeper understanding of Alison’s condition and knowing that she is getting the best devoted care she needs in a safe and comfortable environment,” said Barry.
Nial from Clifden House dementia care centre offers his advice for people who may suspect a loved one has signs of dementia or are at another stage in the process, include:
- If you have a concern, even a little niggle, then follow your instincts. Go to your GP and discuss this with them.
- Push for a specialist assessment if you are still concerned – while the diagnosis of dementia is not what anyone wants – if you get it early enough you can at least put some plans and strategies in place in good time.
- Discuss all these plans and options with your loved one and family memebers while you can.
- Make sure to sort out a Lasting Power of Attorney
- Put in place a support system for yourself too. While the person with the diagnosis will be the initial focus of support and assistance, try not to neglect yourself either. Dealing with someone with dementia is exhausting – physically and mentally. Like Barry says: “From personal experience and from talking to others in a similar situations – it is very easy ‘to run yourself into the ground’.”
- Visit and assess specialist dementia care homes. Don’t fall into the trap of being impressed by the plush décor or the lovely chandelier – monitor and chat to the staff, look at the care they provide and their interaction with those in their care. This is far, far more important than any soft furnishings or beautifully landscaped gardens.
- Location – consider the parking in the area or a conveniently located bus stop or railway station. These can make it a lot easier when visiting.
Barry concludes by saying: My own best advice comes from a little nugget from an on-line study course. This is: Do not think ‘what if’, think instead ‘what is’. Accepting ‘what is’ allows one to deal with every situation as it arises, and then move on.