John Major has been caring for his wife Helen for the past 14 years. Helen has Alzheimer’s, and John spends a lot of time and energy caring for her, and navigating the system to find helpful information. John is positive about the changes happening in his area, but would like to see further improvements to better join-up services and ensure people get the information they need.
John first realised something was wrong when Helen, then aged 54, started to have difficulties making decisions and was not coping well with change. She had previously been a matron in a position of responsibility so they knew something was not right.
“Possibly because of her background, everybody was rather upfront with the diagnosis of Alzheimer’s,” John says.
Gradually over time they realised they would not be able to manage the small hotel they owned and ran together. They moved to a one bedroom flat and John became Helen’s full time carer as her condition developed.
“I was feeding her, I suppose physically doing everything for her,” John says. “Progressively she lost her mobility, so I was having to take care of everything. All these things were just kicking in progressively. Allied to the communication problems, she couldn’t take her own weight. I couldn’t look after her by myself. Everything suddenly became a two-person role.”
Two years ago, Helen moved into a nursing home. John visits his wife every day and has spent a great deal of time and effort over the past fourteen years looking for information and advice about Helen’s condition.
John also plays an active role in the Alzheimer’s Society, giving advice to others about where to go for support, and how to avoid some of the problems the couple faced when Helen was initially diagnosed.
“The fact is that in those days the NHS and Social Services were not a seamless service at all. People were left in limbo. There was a total lack of help, of guidance. In those days you were not pointed in the right direction,” says John.
Left in a financially difficult situation after having to retire early, further challenges were presented in accessing funding for Helen’s care. John found it was up to him to navigate his way through these processes.
“No one was informing me as to what was required and what we should be doing,” he says. “But with people now accessing information more easily online about Alzheimer’s, in the last few years you’ve seen dramatic change.”
John speaks favourably about the National Dementia Strategy and feels it has moved on dramatically.
“The best thing about the National Dementia Strategy is that appointment of Dementia Advisors,” he says. “This is an essential role because that person can be the gatekeeper. That is the continuity, the link and I think it would be tremendous. It could save a great deal, and would help people to be able to continue to live in their own homes longer. It’s a contact, somebody that they can ring, somebody that can point out services, somebody that can arrange an occupational therapist to come in and help, if you’ve got a lifting problem, or if you need some equipment. It’s that link.”
John also highlights the importance for Alzheimer’s patients to be dealing with familiar people: “The same district nurse or whatever is so important. Continuity of the social workers is terribly important.”
John now gives regular talks about caring for Dementia and Alzheimer’s patients through his work for the Alzheimer’s Society in the South West and has visited a number of Primary Care Trusts to speak to them about the Dementia Strategy. He also speaks about the needs of carers as part of local Dementia Awareness training courses.
In his role with the Alzheimer’s Society, John has realised the enormous amount of information that is available and is keen to see it shared even more widely. He is keen to encourage others to speak out and seek help where it is needed.
“I’ve tried to ensure there are services, and help, and guidance available. There is no shame in recognising the condition, be prepared to seek help.”