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seen a neurologist, a psychiatrist, a psychologist and a community psychiatric nurse.
Young onset of memory disorders and dementia have cataclysmic effects on the individual and family life. In my case there has been a prolonged disorderly collapse. Young onset dementia usually affects people who are working and who often have families with children still at home.
Dementia is ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. It is also referred to as ‘early onset’ or ‘working­age’ dementia.
I have lost my job, my income, my savings, my home, my marriage, my family and my friends. I was agitated, anxious, moody, depressed, disinhibited, unpredictable, and unrecognisable, even to myself. People around me found it really difficult to understand and to accept the changes in my behaviour. I became more and more isolated, lonely and then desperate.
Day­to­day I struggled...with getting lost and getting around, with remembering to take my medication. I’d forget to eat and drink. Managing my correspondence, my finances dealing with PIN numbers, passwords, paying my bills was near impossible. I’d leave
the cooker on and burn my food. Lose my keys and my mobile phone, shopping and general household became a trial. Eventually it was recognised that I couldn’t cope without help, my situation had become dangerous. My general health deteriorated rapidly, three emergency admissions to hospital by ambulance. I could no longer sustain myself at home without help. Discharge from hospital following surgery took a very long time. The supported discharge team put a short term re­ablement package in place but I was taken back to hospital when it was withdrawn.
Domiciliary care visits kept me humanely and hygienically warehoused at home, but my life was limited and my possibilities seriously curtailed. My cognitive impairment issues seemed overwhelming and the situation in my life looked bleak and hopeless. Agency care visits usually lasted 15­30 minutes. A carer called at 8:00am (I like to get up early so that was fine). However, calls at 5:00pm or 6:00pm were ridiculous ­ I didn’t want to get ready for sleep so early, who would! Having a different carer to train every week was irksome too. Whenever a carer left or moved on or was unwell, I frequently had to wait until a relief or a supervisor could get around to dealing with my care call.
After experimentation with a mix of volunteers and agency carers, and following a detailed social care assessment, it was
suggested that I should employ my own Personal Assistant (PA). This solved a lot of problems. Employing my own PA would mean I’d receive consistent care, have flexibility and continuity with the same carer. I’d make direct payments to my carer. I started by employing a friend of the family but it was difficult to put a working relationship into a friendship. Offering employment to someone who had been with me as a volunteer worked very well, he came to live in with me, but it was difficult for him to survive on what I could afford to pay.
When he left I employed another friend simply because she was there and willing to come and live in. I found it awkward to ask her to do some things, she was great company and very sweet. Eventually she realised that this was not for her, she suggested an acquaintance, a student. This has worked out very well in practice and hopefully will continue until her studies are completed. There are drawbacks, and this solution is probably not going to work for everybody. For instance, my PA does not have the support of an agency. I don’t have anyone else to turn to if things start to go wrong. The problem of recruitment and the issues around becoming an employer are daunting. Replacing a PA who leaves is a struggle.
My current PA helps me to change the bed, to take my tablets, to have clean clothes, to pay my gas and electricity and makes sure
I have enough money in the bank to take care of the bills. She comes with me on my shopping trips, to appointments and she also accompanies me to social events and family activities as well. We have become co­workers and colleagues. We have many conversations and discussions about how best to approach things. Increasingly she has helped me advocate for myself for meeting my own needs, and at the same time, she has supported advocating for people with memory disorders and dementia more widely. She has become a volunteer at the YoungDementia UK Supper Club, this enables me to play a role in that organisation too.
I have become involved in my local community, started a residents association where I live, volunteered my time to projects that interest me. I have spent time working with children in schools and have been able to take the occasional holiday. My biggest achievement has been to learn to drive again which brings me so much freedom.
Employing a PA has been liberating and my situation has been dramatically improved. There are fewer visits to the GP, no emergency hospital admissions. My GP provided me with an exercise prescription so I now go to my local gym, I manage to get myself out of my wheelchair! I no longer double book appointments, lock myself out of the house or forget to turn up for my appointments or live on toast and beans. Most of what has been achieved recently
would have been impossible without my PA but most of all I have someone with me who is reliable, cheerful and helpful.
Obviously, I will live until I die..but now I really want to live! Better still I want a life worth living not a long, slow, undignified goodbye. I want normal things. I want a life full of interesting, fulfilling and satisfying activities. I don’t want to submit to degeneration and symptom progression and decline. I want to resist it, I still want to push. I cannot resign myself to watching endless TV and living on frozen food deliveries.
I want a BIG life!
    Larry Introduces his PA: I want to introduce you to my current PA. Her name is Ildiko Posta. She is a young woman from Hungary. The quality of my life has been absolutely transformed since she came to work with me. She is patient, kind, generous and understanding. She bakes fresh bread sometimes and she makes me fresh fruit smoothies in the morning. She helps without intruding, supports me when I can’t manage by myself, but at the same time she encourages me to see what I can do. The range of my activities has increased enormously. This is how supportive a PA relationship should be. This should be the standard that everyone aspires to.
Ildiko writes: Hello, my name is Ildiko. I am Larry’s Personal Assistant. I was born in Hungary in 1982 and came to work in England in 2013. At first,
I lived with a family looking
after their two little boys
while attending several different
short courses to improve my English. One of the courses I enrolled in was Creative Writing, which was held in the residence lounge of the building where Larry lives. That’s how we met. By the time I started to work with him I had known him for several months through my visits.
In 2014 I enrolled to study Social Work at Ruskin College and I successfully completed my first year. The experience of working with
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