Who Cares For The Carer

Originally published in Issue 1 2006 icon

By Ginny Fraser

Many people with cancer would not be alive today were it not for the unsung heroes who cared for them during their illness. Likewise, there are many whose last months or years of illness were immensely improved by the loving support of a carer - not the professionals, but the ones who cared for a relative or friend at home. This article looks at what it’s really like to do that job - the challenges and the rewards.

Caring for someone close to you who has cancer is an extraordinary experience, say those who have done the job. It can be stressful, demanding and challenging. It can be full of drudgery and menial tasks. It can be full of the pain and fear of not knowing if they are going to survive. Yet many of those who have done it say that the experience was one they would not have missed, even if the person they were caring for eventually died.

Much depends on the nature of the relationship with the person who is ill. For example, the emotional reaction of a dad with teenagers whose wife is terminally ill would be quite different to an adult daughter caring for an elderly parent or a mother caring for a child with a life-challenging illness.

The message from those who have been carers seems to have some key themes:

At a time of deep grief, there can often be the added pressure of not wanting to "burden" the person who is sick with your feelings. If you don’t have an outlet for those feelings, they get bottled up and can lead to stress, depression and an inability to cope. Having someone to just be able to let go with can be a huge relief. In fact the need for this was why Carol Christmas set up 2Higher Ground, an organisation providing coaching for those caring for someone with cancer - giving people a chance to talk.

It was a turning point that led to her setting up 2Higher Ground

When Carol was thrust into a caring role in 1996 there was nobody to help. She was working as a project manager when her husband was suddenly diagnosed with kidney cancer. She supported him and juggled her job until he died in 1997, aged just 33. Carol threw herself back into work but 13 months later realised she had no sense of purpose. She recalls, "I didn’t know what I wanted and couldn’t find help to work it out." She negotiated eight months off, went on a pilgrimage and trained as a life coach. It was a turning point that led to her setting up 2Higher Ground. The name reflected her vision that coaching helped individuals raise their heads above the demands of the day to day and regain a sense of perspective: that their lives were important too.

Coaching or a support network of some sort can also help with balancing your needs with that of the one who’s being cared for. It can be easy for the carer to put aside their social life, other friends, in fact any independent life, which can lead to burn-out, and even resentment of the one who is ill.

Trinity Hospice in London provides a support group for carers. Margaret Surrey, social work manager, described the group as time limited to six weeks of weekly sessions two or three times a year. "The over-riding benefit for people was time out with other carers," she said. The meetings include time to talk and sometimes speakers on subjects such as getting benefits. Most popular, said Margaret, were the talks on complementary therapies which the carers could use these to take care of themselves.

There are many ways to care and many levels of involvement

There are many ways to care and many levels of involvement, to researching treatment options to accompanying to hospital, to handling household chores, to managing a full on juicing regime to toileting and washing. Unless you are a superhero you won’t be able to do everything, and it’s better to do what you can wholeheartedly and find other ways to share the load. There is professional help available. Macmillan provides nurses who specialise in pain relief and support the whole family and visit frequently. Marie Curie nurses will come in and provide full nursing support. Local hospices can provide respite care. Crossroads for Carers is another organisation that provides support workers (not nurses) to help out.

Letting go of the need to do everything yourself also opens the door for others to contribute. Generally, people find the opportunity to give is a warm and welcome experience. Not all carers are the live-in variety. We all know people who are ill who can do with a second level of support. In Deborah Hutton’s book, How Can I Help she gives great tips on how to be around someone with cancer. When people ask, "What can I do to help?" Hutton says the answer is "Plenty". Much of it is on a very practical front - delivering an entire evening meal ready to eat is always welcome, getting the shopping on a regular basis, and importantly, taking your lead conversationally from the person who is ill. If they want to talk about art, then talk about art. If they want to talk about how sad they are feeling, then that’s the conversation you have.

Be sensitive when asking ’How did it go?’

Many people also tire of repeating every last detail of the visit to the consultant, so be sensitive when asking, "How did it go?". They may just want to talk about Desperate Housewives and forget bloody cancer for a while.

Being a carer can have an impact at work. Although not specific to cancer, a recent survey marking the start of Carers Week 2005, showed that almost two-thirds (65%) of the UK’s six million unpaid carers believe their career prospects have been affected because of their caring responsibilities.

The survey, which canvassed the views of more than 2,900 UK carers, also showed that an alarming 74% of carers currently in paid employment use their annual leave when they need time off because of their caring responsibilities. It was generally recognised that carers need more flexible working arrangements. The new Carers Act, implemented in April, gives every carer the right to an assessment of their own needs by their local authority, though it remains to be seen how successful this scheme will be. The cynical view is that there won’t be sufficient funds to meet whatever needs are identified. The Act is at least an acknowledgement of the need for support.

For those who aren’t working, there are some benefits available. To receive Carer’s Allowance of 45.70 a week, it is necessary to work 35 hours per week looking after the person who’s sick, and if already on Income Support, then the Carer’s Allowance is deducted from that

Being a carer for a loved one living with a potentially life threatening illness is not something any of us would wish for, yet when it happens - as Stacey’s and Angela’s stories show - it seems that it can bring forward a generosity of spirit and willingness to serve that may be deeper than anything experienced before.

Stacey’s story

"I was in between jobs, not really sure what was next when Ginny, my friend and housemate, was diagnosed with Stage IV melanoma, with tumours in her brain, lungs, spleen and stomach and given six months to live.

I was very frightened, and most of all in shock. I had lived in Ginny’s house for a year and we had known each other for five and a half years. It just didn’t seem right that she should be so ill. The next few days became a blur but then it soon became clear that I was to be with Ginny through her illness and take care of her. I didn’t know what that meant practically. I did know what it meant in my heart. I would do whatever it was she needed during this time in her life.

Caring for Ginny involved a lot of work. Tasks included taking her to hospital appointments, preparing meals, shopping, administering her medication in various ways, dealing with household chores and generally being there for her. Ginny chose mainly to take an alternative route for her healing and so at times I was juicing 13 times a day, scrubbing hundreds of carrots and counting out up to 250 pills a day! I got good at it!

At times, I found it really challenging, especially in the early
days

At times, I found it really challenging, especially in the early days when I was very caught up in my own fears and anxieties. I didn’t want Ginny to see my fear and be affected by my anxiety but nonetheless I still had it. Luckily, I have a wonderful family and amazing friends who supported me. If I had any advice for anyone embarking on this, I would strongly recommend setting up your own emotional support network. It is needed. Often I put my own needs low on the list of priorities, and then I often found myself getting burnt out. I also let my own health/fitness go and put on a lot of weight. When Ginny first got sick I couldn’t leave the house without buying three bars of chocolate!

Another source of help that I benefited from was a support group set up by our local hospice. For me this was an opportunity to just go and share with others who were facing similar challenges and also to share the joys of being a carer.

For me the joy and blessings far outweighed the challenges. It was a fantastic time and what’s even better is that four years on, Ginny is very well. We continue to be housemates and are the best of friends.

In being a carer, I learnt that it is really OK to have negative feelings. Sadness, anger, upset, frustration, helplessness - these were some of mine. What I learnt was to speak up and share with those close to me how I was really doing, and that helped me realise my feelings were natural and healthy.

If you have the opportunity to be a carer for anyone, I couldn’t recommend it highly enough. To serve and be there unconditionally for another is one of the greatest gifts of life. It was for me."

Angela Dickson with SDRT Award
Winner Koichi Ichimura

Angela’s Story

When Angela and Neil Dickson’s daughter Samantha was 14, it fell to them to tell her the terrible news that she had a brain tumour that left her with a year to live. "As a parent, telling her the news was the worst thing. It took me three attempts to walk down the hospital corridor to tell her," says Angela. Samantha died when she was almost 17, and Angela cared for her devotedly throughout with Neil taking two days off a week from work to help.

Angela had to decide how much to tell Samantha, and part of her role was to encourage Sam to stay positive, always focusing on the possibility of recovery, even when she knew in her heart this wasn’t possible. "The worst aspect was watching her suffer while her friends were out there having a good time, just getting into boyfriends. Her friends were loyal all the way through, though as her condition deteriorated it got harder for them to deal with."

As an ex-nurse, the physical side of caring was easy for Angela - "It was nothing compared with the emotional side." It was excruciating to witness her beautiful, vital daughter suffer for so long. "Towards the end she lost her voice, and I remember queuing up to buy a baby alarm so we could hear her," she describes.

There were also Samantha’s two brothers to think about and how her illness was having an impact on them. William (8), James (16) and Sam were incredibly close and her illness affected them in many ways. Inevitably they got less attention than before, and occasionally resentment erupted, especially when holidays and activities had to be cancelled for sudden emergencies.

Always have hope. Although the prognosis may be poor, you’ve got to be positive and encourage the one who is ill to have hope

Angela’s relationship with her husband Neil also suffered. "We couldn’t deal with each other’s pain. We were like ships in the night during the many hospital stays, one being with Samantha whilst the other was at home with the boys. We never had any time together and couldn’t even give each other the comfort of putting our arms around each other. You are giving so much you don’t have any left over." Many couples do split under this unbearable pressure, but in the Dickson’s case their relationship was ultimately strengthened.

After Samantha died Angela and Neil focused all their energies into setting up the Samantha Dickson BT Trust. She says that she threw herself into the work so fully that she is not sure that she has ever really dealt with the loss. "Sam was very concerned and caring about other people, and we felt if the charity could raise awareness it would be a way to make her life and death meaningful." The charity has been enormously successful, raising 3m in the past two years and becoming the largest funder of laboratory-based brain tumour research and largest brain tumour charity in the UK.

Setting up the charity was a great blessing, "I believe there is a door opened in life for all of us and it is up to us to go through it. When Samantha died a door closed, and with the charity another one opened."

The experience of caring for Samantha and her subsequent death has changed Angela in a number of ways. She feels she has opened up and become a warmer person, much more able to cuddle people, to say "I love you" or "I shall pray for you".

Angela’s advice to anyone in the carer’s role is this, "Always have hope. Although the prognosis may be poor, you’ve got to be positive and encourage the one who is ill to have hope. Now we are funding more research, scientists are working hard on finding a cure. We don’t know why these things happen, but maybe one day we might understand. Be as loving and supportive as you can be."

If you would like contact SDRT or make a donation: 0845 130 9733, [email protected], www.sdrt.co.uk.