Raising awareness of Early Onset Alzehimer's

In  2010 Pat Moffett wrote his book ‘Ice Cream in the Cupboard’ about the true story of caring for his late wife Carmen who had early-onset Alzheimer’s. At the time Pat was still pursuing his long-term career in international logistics but after he retired in 2017 he had more time to devote to raising awareness of the illness. In 2017, by chance, he met another author on a plane and they exchanged books. Two days later Pat received a phone call from his new contact who told him that Pat’s story should be made into a movie.

There is little difference between Early Onset Alzheimer’s and Alzheimer’s, but many early onset patients still retain the physical strength associated with a younger person. This can put their caregiver in dangerous situations because Alzheimer patients can become very angry and agitated which can lead to violent behaviour. Alzheimer’s also accelerates more quickly in younger people and the medications used are generally more effective in older patients.

In Carmen’s case, Pat first noticed that they had started arguing a lot. Things had been quite busy so he decided to take her to Puerto Rico for a holiday. They checked in to their hotel and went out for dinner. Pat was looking across from the verandah of the restaurant and when he turned around Carmen hit him. She then ran out of the restaurant. When he caught up with her she was still very angry but they got a taxi and went back to the hotel. She then went straight to sleep.

Pat really didn't know what was wrong so he was really surprised when a while later she came out to the terrace where he was sitting and said she was really hungry and when were they going to eat. She couldn’t remember anything that had happened. Pat was so concerned that he got a flight home for them the next day.

When they got home things seemed to level off and go back to normal. She wouldn’t go to a doctor but after going food shopping one day Pat realised that Carmen had put the ice cream in the cupboard rather than the fridge. Pat knew he had to get her to see a doctor but the situation was taken out of his hands soon afterwards her employers realised there was a problem and suggested she get tested. She failed the test and came home that evening and told Pat that she had a ‘touch of Alzheimer’s’.

Pat highlights how importance it is for carers to take care of themselves otherwise the disease claims two victims. Some friends and family aren't so supportive when they find out someone they know has Alzheimer’s so often it comes down to hired caregivers.  Pat found a lady who he had experience dealing with Alzheimer’s patients and he thought he could go back to work but within 5 days Carmen had punched the caregiver and run away from her. Other helpers followed but the same problem occurred. Pat felt it was better to try and keep his job so the next step was to try daycare. He found a centre close to their home. It was very expensive but it worked well for a couple of weeks but he was then called from work as Carmen had punched a 90-year-fellow patient.

Luckily a legal case was not pursued but Carmen wasn’t allowed to go back to the daycare centre. It was then suggested that she be hospitalised so she could be tested to find out if it might be possible to use anti psychotic drugs to calm her down. She was monitored 24 hours a day and after being in hospital for three weeks Pat was told there were only three drugs that might help her and that there use might be limited. The drugs were so strong that they needed to be monitored constantly so the recommnedation was that she to go straight into 24/7 care. Whist in full time nursing care Carmen still had violent episodes but eventually, after nine years, her body started to fail and she died. Pat felt guilty because in many ways he had wanted it to come to an end because Carmen wasn’t the person he knew anymore.

Early on in the process of looking after Carmen, Pat realised he would need support from people who would understand what he was dealing with. He found a local support group but everyone was much older than him and didn't understand Carmen’s violent behaviour. He realised there was nothing for the carers of Early Onset Alzheimer’s patients so he started a new group with a social worker with regular meet ups for dinner whilst professional carers looked after their loved ones

It is thought that you can defer the onset of some Alzheimer’s though diet, stress reduction etc. There is a genetic risk though. Pats wife Carmen, her brother and two sisters were all were diagnosed with Alzheimer’s in their 50’s and died in their 60s. When he tried to track back, Pat found out that Carmen’s father who had been an alcoholic, had also suffered from bouts of forgetful behaviour which at the time was put down to his alcoholism.

The motivation for Pat’s book came from the fact that he simply hadn’t realised that Alzheimer’s could affect people at such a young age. Consequently, many of the caregivers are very young themselves so they became the drive and inspiration to get the story out both nationally and internationally.

 You can listen to the podcast in full and find out further information about Pat here. Our previous podcasts, upcoming guest list and previous blogs are also available.

You can find out more about Pat and Ice Cream in the Cupboard at pat.moffett.com