I was born in the West Indies and was lured to England by the promise of work and a new life in the late1980s.  I was in my mid 30s then and a little later I found love and got married to another West Indian. My husband had been married before and he is more than 30 years older than me.  Over the last 25 years we have had our ups and downs and even the odd period of separation but we have been reasonably happy.   The age difference made little difference to us back then.  I don’t even remember it happening really but I now find myself in my mid fifty’s with a husband in his late eighty’s, who suffers from dementia, serious lack of mobility and who is utterly dependent on me.

When the changes in my husband’s health started to show, I worked shifts in central London which often meant leaving for work as early as five in the morning.  At first he was much more able than he is now which meant that I could continue to work while he attended a local day centre regularly, but every now and then there would be a crisis (he would be too ill to attend the day centre, or need to see his GP, causing me to have to miss work days at short notice).  At the beginning my employers were very understanding but in the end my absences became too frequent to make it possible for me to continue to work.

At first I did try to find a job which was more local but, he became more dependent on me quite quickly once I was at home more.  I am not sure if that was not just because I was there to make his breakfast and help him dress and there was less need for us to rush around in the mornings.  We went through a period when he had his life at the day centre while I continued to apply for jobs and attend interviews, but it soon became obvious that working full time was never going to be an option for me and part-time work would leave me in a financial position where I was worse off than I was on benefits caring for him.

Over the next 6 months I found my life had completely changed and at the end of that time I was only getting out to the shops briefly because I needed to be back from where ever I went in time for when my husband got home; he was becoming more and more dependent on me for everything.  During this time he needed to attend the GP more often and there were also many more appointments being scheduled for visits to various hospitals? 

It was quite gradual really, but I woke up one morning and found myself living quite a lonely life.  I was never the type of person that went out on the tiles at night, but by that time I never went out in the evenings and shopping was a trip to the local Sainsbury’s and back as quickly as possible because I was aware that my husband would soon be returning from the day centre, or had to attend a health appointment somewhere.  My life revolved around him to the point where I did not have any time for an evening out with the girls or even for myself.   My family were as supportive as they could be.  I have two sisters who had also immigrated to England and who lived quite locally, although one was wheelchair bound and quite ill herself, while the other had her own family limiting the help she could offer either of the other two. 

My husband has periods where he is completely lucid, times when he says nothing at all and others where he makes no sense at all and barely remembers who I am.  He now has an air-bed which he can only leave if hoisted or physically lifted from it.  He sleeps most of the time which results in his waking at random times; often during the middle of the night.  He has no control over his bowels or bladder anymore and needs to be fed.  He often has bad dreams which wake him in the middle of the night and involve his shouting out.  The result of this is that I rarely get a full night’s sleep and the act of lifting and moving him was having an adverse effect on my back while I was missing conversation with others and the freedom to have time with my friends.

When I realised that a job was not an option, I visited Lewisham Carers who helped me to claim the benefits which allow me to be a full time career to him and, more recently, social services provide a visiting carer who helps me to get him up in the mornings and put him to bed at night.  It is really good to have this visitor to talk to about problems that he must see during other visits because he is able to provide both physical and practical help when attending to my husband as well as valuable advice to me.

When I realised that he was deteriorating I also realised that air travel would soon be impossible for him and I managed to arrange one last Christmas in Jamaica.   We spent it in the sunshine remembering days of long ago, and it was really good to see his reaction to friends that he has not seen since his childhood in some cases.  They say that dementia sufferers remember things and people from early life more readily than more recent times, and I believe that he really enjoyed the experience, although I wonder if returning to England after did not make him more upset.  When we returned from the Jamaican Summer to the English winter he appeared to get worse just a little more quickly.  During periods of lucidity he would often tell me that he would like to go home, to which I would reply, “You are home”,  but he would tell me, “No, Jamaica!”

My husband has six sons from his previous marriage, two of whom are older than I am, but they rarely visit.  I understand that they are caught up in their own lives.  They all live quite a distance from Lewisham and some of them phone regularly to see how he is.  Sometimes he realises and can talk to them while on other occasions he has no recollection of them or what the phone is for.

It occurred to me that I don’t have the opportunity to go out for anything other than shopping for food, I don’t remember the last time I bought a new outfit but then again, I don’t really go anywhere to wear anything new.  I get very few visitors and communicate with most of the friends I have left via telephone.

I suffered a stroke about a year ago, and luckily I am now fully recovered, but that experience has forced me to think about what I will be able to do if I suddenly stop being a carer and as a consequence I have started doing some computer based courses.  I have never driven and so spend some of my time studying the driving theory test on line.  I have also signed up for courses about hygiene in a health setting and I am now looking at other online courses.

It is a lonely life and I do worry about where my life will take me next.  But the secret is to focus on one thing at a time and put my life in God’s hands.

If you have a similar experience please get in touch.