Finding my way forward as a carer

In the latest of a series of blogs to promote Experience of Care Week, a former London firefighter reflects caring for his wife and how he maintains his own health and wellbeing:

Becoming a carer has changed my life quite dramatically.

I have always worked and, up until the last few years, I was able to keep working, gradually reducing my hours so that I was available to care for my wife.  However, as  my wife’s condition grew worse,  I was required to provide support and reassurance for pretty much the full 24 hours, so I had to stop working completely.

I love my wife, and try to take her out as much as possible to provide stimulation, which she responds to, and sometimes her old self returns, which makes it all worthwhile.

As a full time carer, I am required to prepare and cook all the meals, do all the shopping, carry out all household duties, washing, ironing, cleaning, etc., my wife’s personal hygiene, and helping my wife get dressed and undressed.

Being a carer has changed me as a person. I have had to become much more patient and learn to cope with being less frustrated as the illness progresses. However, I have also learned that in order to look after my wife I have to look after myself and keep myself healthy.

I always try to cook healthy food with fresh ingredients in well-balanced meals. I find drawing up a menu helps with this.

I also try to exercise regularly. I go for walks, which I enjoy, and, when I can get cover, play golf. As well as helping keep me fit, this gives me respite from my caring role and a chance to meet up with my friends.

My wife was diagnosed with early onset Alzheimer’s four years ago.  Following the GP’s original assessment, following the scan at the memory clinic, and after being prescribed medication, it was explained to me that the illness may be slowed down but cannot be cured.

A few weeks later we received a visit from an Alzheimer’s professional to help and explain the way forward. Other members of the family were present, to help them understand. However, since that meeting there has been no follow up, we have just been left to get on with life.

So, I have been in touch with various groups, and have listened to their advice, but I am unable to take full advantage of it, as my wife is unable to engage with groups, or even understand that she has this horrible illness.

As the condition worsens I have grave doubts about the future, and would welcome any help I could get to help me understand how to cope in the future. I am managing now, with some help from my family, but as the illness progresses it is becoming much more of a problem. There are times that not only does she not recognise family members, but more to the point, asks who I am.

I attend regularly the Harlow Adult Carers group, which I find very helpful; this gives me some respite and a chance to discuss things and learn from fellow Carers.

I would like thank all those who have helped and advised throughout my journey so far, especially those who have helped me navigate the difficult waters of the legal system and the benefits system.

I would welcome the opportunity to meet other carers in a similar situation, to see and find out how they manage, and cope with rejection from their loved ones, and understand how to deal with it.

I need to find the way forward, so that I can prepare for when I may become unable to cope on my own, or for when my own health deteriorates.

  • Experience of Care Week puts the spotlight on improving patient, family & carer, and staff experience; it is about supporting improvement in experiences of care in provider and commissioning organisations; together we can continue to enhance experience of care for all.
Brian Kelly

Brian Kelly is a 73 year old, retired fireman.

Following 30 years services in the fire service, he spent 10 years working at the Bank of England printing works, where he was in charge of their Fire Section.

Brian’s final employment was as a support worker in the Home Treatment Team for a community mental health team.

He retired last year to care for his wife who has just reached the age of 78 and who was diagnosed with early onset Alzheimer’s four years ago. Brian has been a full-time carer for his wife for the last two years.

When his caring role allows, Brian’s interests are D.I.Y, some golf, getting involved in the garden, walking, and generally keeping busy. Brian also enjoys reading and watching TV, when time permits.