The Princess Royal Trust Borders Carers Centre (SCIO)

Philip

Carers need support to integrate back into society

I started caring in 1998 I had to give up my job.  My dad and Mum were ill and I said I would never put them in a home. After my dad died my mum got very bad dementia until 2009. I had no support from my family. I spent 11 years without a holiday or a break; I didn’t have one night respite in 11 years of caring. I had to provide care for all their needs. I couldn’t have a social life or do anything out with my caring role. It became harder once my dad died as my mum got dementia; she didn’t even recongise me at times which was very hard to deal with. Her needs were so intensive I had to give 100% of my time.  Even at night time I had a baby monitor – I didn’t have a night when I wasn’t disturbed.  The main bit of advice I would give to someone that has recently become a carer is making sure you have arrangements for respite care. They both refused to accept respite and it never came into their thoughts about my needs.  I was constantly thanked, but my needs were in the background – everything was focused on what they needed.

The NHS support was excellent. The GP was great too. As my mum deteriorated the GP would come in fortnightly and I also got fantastic help from the district nurses and the Community Nursing Team. There isn’t anything more they could do. The support I got from the NHS Borders was 100% better than the support we got south of the border.  You got treated as a person in the Borders – they always found time for me. The Borders Carers Centre was very helpful and gave me a lot of advice and support. If it hadn’t been for them I wouldn’t have been able to do the things I have done today and use my experience to help other carers. I came across them just by chance when I saw a promotional card in the local pharmacy.

Home care over the last 10 years has got a lot better than what it was.  But there is room for improvement because they are trying to keep people in their own homes.

I think it would be nice at some point there was some kind of appreciation for carers in the Borders areas an away day where carers can share experiences.  A social event for carers to enjoy the company of others carers. It would address the social needs of a carer.  They could be acknowledged and it would show the appreciation for all they are doing.  24/7 caring for 11 years was jolly hard.   It was absolutely unbelievably difficult when your carers duties end and you lose the person you are caring for. Your day is so long you didn’t know how to fill it.  I would say to any carer to get involved in voluntary work especially work where you can offer something back.  Every carer, once they have lost the person they are caring for needs support to integrate back into society.   The hardest thing I found after losing my mum and dad was when I went anyway I felt as if I was an outsider as you spend that long being isolated.  I feel the voluntary work I do with the NHS, the Carers Centre and Borders Voluntary Community Care Forum centre has helped me immensely to reintegrate. Volunteering is the one of the best thing I have ever done, you need a fresh start.

Cameron

Caring is my life

I am a retired engineer. My wife and I moved to the Borders in 1998 after working abroad. I have cared for my wife for over seven years. It was discovered that she had spinal stenosis and, following surgery, now needs a wheelchair to get around.

My carers role is my life - I can’t separate the two. Caring for my wife covers everything from cooking meals, taking her out in the wheel chair helping her get out in the morning. She has had personal care help from social work for the last three years and a home help has made a real difference.  We have become really good friends with the home help, she retired but she still helps out on a voluntary basis that is really good. We did engage a private care provider after that but they kept sending strangers who were always late and they didn’t involve us in decisions.  You get used to a carer, and you can’t just have a stranger turning up. The social workers are really wonderful people.  Social services, the Health Centre and Borders Genera lHospital provide brilliant support to us.  We are very fortunate.                  

I only discovered the Carers Centre by accident when we saw a poster in the Western Genera lHospita lwhilst my wife was getting treatment.  The Carers Centre is excellent, one of the best things I did.  They will help with virtually anything you ask for. They have a had a number of courses in the Community Hospital on first aid and handling stress, benefits, lifting and handling.  They were all really useful. I now take part in monthly meetings; it’s a nice break to meet other carers and just chat and it’s important to have space where you can take your mind off your caring responsibility. 

The support we get through the NHS is provided by our local health centre.  The centre has been brilliant – the doctors are always available on call. They are always very helpful whenever we have needed out of hours help it has always been provided very quickly. In particular the practice nurses, who help with the incontinence, and other related problems are always so responsive.  On the occasions my wife has been admitted to the BordersGeneralHospitalthe care we received has been brilliant. The food and the way she was looked after in the BGH – was good.  We couldn’t complain at getting the individual support we need. The NHS is something we all should be proud of.

If someone was starting caring my advice would be to get in touch with the Carers Centre.  Also make it clear to your doctor that you are a carer. It helps if both of you get each other’s Powers of Attorney – this is in our medical records.  This helps with anything to do with consent.  You should make all services aware of this.  Also for an assessment they will do it for you both.  Social services do joint assessment and you should make sure that all services are aware of this.

My wife goes to respite care three times a year and she loves it– we tie it in with long weekends to my family. It allows me to keep contact with my family. I worry when I am away from her, and that can be stressful.  We always miss each other a great deal and really look forward to seeing each other again.

I think from my perspective firstly that being a carer for my wife has given me an active purpose in life and this is not a burden it’s just a way of life that I have got used to.  We are now used to this being our life and we have adjusted our lives to suit.