Stories

Chris is the only carer for her husband who has MS, dementia and diabetes. She took early retirement in 2012 after a high level career in London for over 30 years.

Chris says: “My husband is fine on his own for a few hours, but no longer. We have had bad experiences with telephone scams and online problems.

“Initially, my life was very different and I felt quite alone after working with a large team, but my husband needed more care and I am happy to look after him. After seeing Carers Together on the web, I joined to see what other carers’ experiences were, if there were support groups and suchlike.

“I saw the offer of the e-mentoring system in the newsletter and felt this would suit my situation and allow me someone independent to talk to via email. While we cope with the physical side of MS (we have moved to a bungalow, had wet rooms installed, had the garden levelled, doors widened etc.), the mental side has been more difficult, and I found myself getting frustrated with the mental issues more than the physical.

“I was paired with a lady named Sue, who is also a carer. The logging in process offered us both protective anonymity. The system is easy to use, although I would have liked to set my own password; the one I was given is difficult to recall. I asked Sue to allow me to ‘vent’ if I needed to and she was happy for me to do that. We email a couple of times a week, talk about ordinary, often domestic things and she is very supportive if it has been a bad week. This has allowed me to stay much calmer, have a laugh with Sue and situations are often put into perspective. Sue has been able to point me in the right direction for assistance, made helpful suggestions (things she has done as a carer in her home) and given me an outlet to vent outside family and friends (who I try not to embroil too much with our issues).

“I would recommend the e-mentoring system to carers, especially those who spend time at home and feel isolated, particularly if it is difficult to talk on a telephone.”

Sally cares for her partner of 20 years who was diagnosed with lung cancer (primary) and brain cancer (secondary) in February 2012. She is also an insulin-dependent diabetic. That condition was diagnosed in March 2007.

“I was aware of help available but struggled with the fact that I needed it. I am a lawyer who works primarily in the area of social welfare law – housing, benefits, employment and similar – and I found it really difficult to be the one needing services rather than the one advising others who did. We did get some practical help from social services in that they set up an alarm system for when I was forced to leave my partner alone which helped alleviate some if my anxiety when I was at work or elsewhere but at home.

“I found talking to a mentor very helpful. It was useful to have a space to express some of my upset and frustration without needing to explain or apologise for it. I felt the mentor assigned to me was a good match as he looked after his wife before she died of cancer. However it was not always easy to access the replies and as it required an internet connection it was not always available. However on the whole it was a positive experience that I would recommend to others in a similar position. I found out about it during a general internet search for support.”

Tracy is a carer for her mum, and previously cared for both her mum and dad. She says: “I was caring for my mum and previously my dad as well. Mum suffers from dementia which is now quite serious. I was feeling low when I was contacted by Carers Together who offered me a mentor.

"She turned out to be Irene who had been in a similar situation. Irene asked about mum’s history, and pointed me in the right direction to get help for mum and myself, which I acted on.

“During these low times her reassurance was so valuable it kept me sane! When our mentoring sessions ended I couldn’t thank Irene enough and have recommended Carers Together to other people who are in my situation. Family members don’t always understand how hard it can be but talking to an independent person who has been through the same situation is so important.”

Marilyn's caring role started five and a half years ago when her husband was diagnosed with secondary brain tumours after a previous melanoma.

She says: “I gave up my job of 19 years to care for him. It was a massive adjustment, going from being around people all day, to being housebound, watching his suffering and doing anything I could to make things a little better for him.

“I was thrown into dealing with a whole new world of medical jargon, and coming to terms with the fact that both of our lives were forever changed. The prognosis was not good, one to two months. Fortunately, he had gamma knife treatment which appears to have slowed the tumour growth. It has been an uphill struggle ever since as no one expected him to last more than six months.

“He has seizures so cannot be left alone. I administer his medications and for a while I had to give him injections due to a blood clot in his leg. As somebody with a non-medical background, this was completely overwhelming.

“My husband has been in hospital several times, in intensive care and in the hospice. It’s very stressful. I have a carer twice a week for four hours. The other 160 hours, I am housebound. I can't even pop to the shop to get a loaf of bread in case something happens. Once a fortnight I have a hospice nurse for three hours but that is all.

“My social life is non-existent, which makes it lonely at times. Friends phone less and less, not knowing what to say. My husband no longer comes downstairs and rings when he needs my assistance or a cup of tea. He has all meals upstairs too. Sometimes, the silence is deafening.

“My husband gets extremely frustrated as he was very independent and finds it difficult to have me do everything for him.

“The mentoring system is fantastic, enabling me to correspond with an anonymous, yet caring and understanding person who was matched with me due to her similar experience. I can rant, confide and describe my feelings without losing my dignity. This scheme is extremely important and should be available on a full time basis. It has been a lifeline for me at times when I felt I was going to explode with frustration. It would certainly benefit others in my situation, especially when we have a very bad day. It needs to continue and evolve.” 

Jackie is a carer for her daughter who has spina bifida. She says:

“I woke up one morning overwhelmed by the caring role I found myself in. I had struggled for years with feelings of isolation and inadequacy before reaching out for help. My daughter has spina bifida and my husband died of cancer in August. I needed someone to talk to who didn’t know me but could empathise.

“I found Carers Together and asked for their help. I was put in touch with Sue who is in the same situation as me. Sue has been a great support. When I told her about my husband’s death I was amazed by the sympathy and support I received from her and the Carers Together team.

“It has been hard on Sue at times as she has also lost her husband. Being able to talk to someone who won’t judge you and you can share anything with is a valuable resource, not just for me, but for all carers should they need it. The difference it has made to me is that I have been able to get through the past few months since I lost my husband. The isolation I have been feeling has eased and Sue has helped me to grieve.

“I believe that Carers Together is providing a valuable service to our community as there are many thousands of people like me who are struggling and in need of support. The e-mentoring system is very easy to use and I would encourage people to access this support.”