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A Carer’s Thoughts

According to Carer’s UK there are 6.5 million people supporting a loved one who is older, disabled or seriously ill. Often carer’s can feel isolated and unsure of where to find more help and support. When most people think of Kilbryde Hospice they probably think that we only offer support and care to those diagnosed with a life limiting illness. However we also extend that support to the families and, importantly, the carer’s of anyone affected by a life limiting illness. Whether it’s taking part in the exercise classes available or receiving complementary therapies from one of our fantastic therapists or even coming along to our Drop-in service for a cup of tea and a chat, we’re always here to offer our support and a listening ear. Recently one of our service users, who cares for her husband, shared her experience of, not only, being a carer but also the support Kilbryde Hospice offered her at the time. 

“I know that there are people who will read this and think to themselves “I’m not a carer; I’m a husband/wife/partner/father/mother/son/daughter, I do what I do for my relative because it’s what I want to do and I am happy to do it – no matter what it takes”. Carer is just a word – substitute it with whichever word you choose to describe yourself.

Whilst I do not consider myself old, I know that I reached an age and stage in life late 2014/early 2015 when it came as a bit of a shock to find that I could no longer cope with even the simplest things in life such as looking after myself, my husband, our home or going to work. For almost a month, I sat at home and had very little interaction with my husband, family or the outside world. Throughout my life I have tended to be the person that people came to with problems. The person that they lean on when things are tough because I was considered to be a good ear, honest, easy to confide in and perceived to be an all-round ‘coper’.

During the course of the last few years various major traumas affected me and the wider family culminating in my husband’s diagnosis in 2014, the treatment for which has been 100% successful. While we were both coming to terms with what he had gone through, the unexpected death of a very close relative occurred which rocked our world further and during that time it was extremely difficult to cope with the strain of her immediate family depending on both of us. Not long after this event I knew I was struggling with things and had a period of time where I felt I needed some time and space to get my head straight again. After attending the GP I had a spell off work, felt better, returned to work and thought that everything would be absolutely fine. For a while that is what happened.

Towards the latter part of 2014 my husband’s experience caught up with him and he had to take time off work to regroup. Christmas/New Year came and went and I had gradually become aware that all was not well with me. I attended the doctor, was immediately signed off work and commenced on antidepressant therapy which I had previously resisted on the grounds that I didn’t need medication but simply time to pull myself together again. The vast majority of concern during the previous year was shown for my husband which is totally understandable. However, unless people have walked the path of a carer, they have no conception of how difficult a role that can be or just how invisible you can feel – it is generally presumed that you will cope and be fine because you have always coped with any situation thrown at you. There can be very little thought given to the fact that sometimes it is much more difficult to watch a loved one going through things than it is to actually go through it yourself. To say that the cracks were showing with me was, with hindsight, a gross understatement.

Eventually we found our way to Kilbryde and, once we plucked up the courage to go in, were amazed and delighted by the warmth of the welcome and the immediate concern shown to both of us. I had gone in with no expectation of being offered assistance – instead expecting to continue playing a supporting role. Like so many carers I felt that I had been almost invisible up until that point. It therefore came as something of a shock when I was asked how I had coped with everything that had been going on and was told that help was at hand – this was a tiny light at the end of what was at the time a very dark tunnel.

I went on to have sessions with Linda and found them to be extremely helpful and beneficial in helping me recognise how vulnerable I had become. I also attended the drop in relaxation classes which helped enormously and sometimes I would just sit around a table at Drop-In having a chat and found this so therapeutic in ways that would not have believed possible. It became an escape because of anything and everything will be talked about and there is certainly no shortage of laughter which can be the most powerful medicine of all.

With the benefit of hindsight, the biggest problem I had was in admitting that I simply cope not cope any longer. This was a total shock to me, not a feeling that I was used to having and is, I suspect, a common experience for a lot of carers who have found themselves in similar situations. You get up in the morning, put one foot in front of the other and hope for the best but, just sometimes, you find that your get up and go has gone!

Going to Kilbryde over a period of months in 2015 has been completely life changing experience for both of us. Once I recognised my problems, serious work began on addressing the various issues which I had and now, with a huge amount of help from my husband, everyone at Kilbryde, family and GP, I am pleased to say that I have come out of the other end with a far greater understanding of myself and perhaps most importantly what my limitations are. I also understand that it is perfectly OK to ask for help – something I was never very good at – rather than try and carry everything on my own. I have also learned that it is OK to gently decline requests from family members to do things that, at the end of the day, they can with a little effort do themselves.

Now, looking back over the last year/eighteen months with clearer vision and perspective, I have come to understand that the most difficult thing for a person in a caring role is to admit that they have, at time, experienced extreme difficulties and actually can’t cope with every situation which arises on their own. I fully understand and accept that not everyone will have the happy outcome of a medical condition that my husband has been lucky enough to get, but neither can I stress enough just how much help we all need at some point in our lives nor is there any shame in being just a little bit selfish in saying that I need “me” time in order to cope.

If you recognise any of this as being relevant to you, I would implore you to seek help before you hit the low that I was at. At the end of the day, before you can help anyone, you have to be in the right place mentally and physically before you can fulfil your role. Sometimes when things are at their blackest, you need to take a step back before you can move forward”

If this rings true for you then support is always available at Kilbryde Hospice. To find out more information contact us on 01355 202020 or