Archive for June, 2010

The following is a guest post by Judy Brutz :

My husband has glioblastoma multiforme, an incurable form of brain cancer. Ted Kennedy died from it. The early challenges I am experiencing as a caregiver are disbelief, feeling overwhelmed, trying to define my role as caregiver, maneuvering a change in my marital relationship, recognizing the need for financial and legal planning, and caring for myself.

Disbelief. It is difficult for me to stay focused. It is hard to grasp what is going on. There are a few facts that I hold onto. My husbands’ symptoms developed rapidly during a four week interval. From being able to speak normally, he started searching for words, and then progressing to not remembering the names of objects, substituting words and phrases which didn’t make sense, to not being able to spell. He had an emergency MRI, which showed a large mass over his left temporal lobe. A rushed appointment for brain surgery was made in the next state. I was told that he would not be expected to live more than one or two years even with the tumor removed and aggressive treatment undertaken.

Overwhelmed. Initially I felt completely overwhelmed, like I didn’t know whether I was coming or going. Ten days after surgery, I am going in and out of feeling overwhelmed. I realize that I’m not attentive to my surroundings, as though I’m zoned out somewhere. My center of my chest hurts. I know this to be a major sign of stress. Also my breathing is shallow. I must tell myself to breathe.

Caregiver Role. I’m abruptly being thrust into the role of caregiver, and I’m trying to figure out what this means practically. My husband’s expressive language limitations cause major problems in communication and in joint decision making. I need help in defining my role. Hopefully, when we go to the Cancer Center, the social worker will help educate me.

Marital Relationship. I’m having to take over decision making and financial management. My husband needs reminders and direction. We are both distressed. Both of us become frustrated and irritable with each other. He says things to push my buttons, and I react. I’m on a sharp learning curve. I need a support group and will go to a meeting this coming week. I also need personal counseling, and my appointment is made.

Financial and Legal Planning. I need to make sure that our affairs are in order. My husband had this role before his surgery. I’m discovering that our papers are in disorder. He may have allowed his life insurance, naming me as beneficiary, to lapse. I will go to a lawyer even though my husband does not want me to, nor does he want me to spend our money on legal fees. I feel conflicted in going ahead without our discussing and agreeing to a plan, but this is the new reality of our relationship and my role as caregiver.

Self Care. It is critical that I take exceptionally good care of myself. I have my own health issues and must not get run down or stressed. Otherwise, I will rapidly decline and then both of us would need caregivers.

Judy Brutz is author, spiritual director, retreat leader and speaker. She lives in Idaho with her family, and enjoys nature, knitting for peace, and volunteering. http://judybrutz.net

Article Source: http://EzineArticles.com/?expert=Judy_Brutz

We wish Judy all the best on the difficult road ahead. Do you share any of these issues? Are there any coping strategies which have helped you?


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I came across an article which talks about how mindfulness meditation can help people with cancer and their supporters by interrupting the cycle of negative thoughts and worries. You can read the article here.
I personally find it difficult to ‘just meditate’ – which probably means I have not practiced enough. So I prefer guided meditations, and I had some created for Families Facing Cancer. One of them is a Mindfulness Meditation, and you can download it to play on your computer or MP3 player here : mindfulness meditation cancer. It is about 12 minutes long – I hope you enjoy it.

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As part of Carer’s Week 2010 we are thinking about carers needs – what will allow them to have a life of their own? Yesterday I shared a resource which can help carers to recognise that this is something they need and can have. Today I would like to look at what those needs might be. I am not a carer myself, though I have family members who have provided full-time care for my mother when she was ill, so I will probably miss out some needs. I believe that all of these and more should be provided to carers :

  • Information – about the illness, caring and benefits.
  • Training – in caring techniques appropriate to the care they are providing – and ongoing as the care needed may well increase with time.
  • Advocates – people to speak on their behalf, both on a national level and for them individually to ensure they get whatever benefits or respite they need.
  • Respite care – to be relieved of caring on a weekly basis and for regular holidays, without having to ask for this.
  • Equipment – the equipment which can make all the difference to caring should be assessed and provided. The carer should not have to research this themselves.
  • An alternative – if the carer is or becomes physically or emotionally unable to provide the level of care needed there should be resources available to step in and provide an alternative, be that residential care or more likely carers coming in to the home. Carers should not be made to feel they have let anyone down if they are not able to continue in their caring role.

What else do you, as a carer, need? Or am I demeaning carers by suggesting they need help? Please share your experiences.

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What a strange title!
The reason for it is that I wanted to share a resource with you. If you are a carer, you probably won’t buy it. Heaven forbid that anyone should suggest you be (even a little bit) selfish. But you should, you should – buy it, that is!
And if you know someone who is a carer (even if they think they aren’t, really) then you should buy it and give it to them.
This resource is a book, and it’s called The Selfish Pig’s Guide to Caring. The title is, of course, a bit of a joke (and if humour about such a sensitive subject is likely to offend you, then I guess it won’t be the book for you). Carers are not really selfish at all – but they often think they are. “Why should I get a day off from caring when my loved one cannot get a day off from their illness or disability?” Well, maybe the key word here is their.
In this book Hugh Marriott gives lots of practical advice, as well as subtly (ok, pointedly) suggesting that being a little bit of a selfish pig would be a very good idea. I devoured the book over last weekend, and think it’s the first thing any caregiver should read – before all the leaflets about their loved one’s illness! Now I’m just trying to think of a way to pass it on to my father, who does not yet think of himself as a carer (the second time around).
You can find links to buy the book on Amazon through our website here.

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More than three-quarters (76%) of people looking after an ill, frail or disabled loved one do not have a life outside of their caring role, according to new research issued to launch Carers Week.

The results show that huge numbers of carers are left isolated and lonely, missing out on opportunities that the rest of the population takes for granted. 80% have been forced to give up leisure activities or from going out socially since becoming a carer.

The majority of those surveyed can no longer rely on relatives for support either, as these relationships have suffered as a result of caring – 75% say they have lost touch with family and friends.

One of the carers who took part in the survey was Theresa from Glasgow. She cares for 3 people – her 2 sons, one of whom has Down’s Syndrome, and her registered blind mother. Balancing full-time work with caring has meant sacrificing her life as she once knew it. Theresa says:

“A life of my own is a daydream. Caring demands are relentless, and costs you your health, relationships and happiness. To have a life of my own, for just one day would be marvellous.”

Carers say they simply exist, are marginalised and invisible. Unable to socialise, to have romantic relationships, or even to consider having children, the impact on carers is emotional, mental, physical, and fiscal. 4 out of every 5 carers say they’re worse off financially, while more than half (54%) say they’ve had to give up work.

Despite saving the UK economy £87 billion annually by relieving pressure on health and social services, carers are not being supported in the vital role they play for both their communities and society at large. Almost all carers questioned agreed a life of their own would be achievable if they received breaks, a decent income and were given support in times of crisis.

Carers need and deserve change. Better access to advice and information, improved funding for breaks, and support and flexibility for carers at the workplace are all needed urgently. Only then will carers get a real chance at a life of their own, and the opportunity to do some of the things that the rest of us take for granted.

3,282 carers took part in the survey, both online and by post, which was carried out by Carers Week between 18 February – 7 April 2010. 65% of those surveyed were heavy-end carers, responsible for 50+ hours of care each week.

If you are a carer, is this also your experience? The interview I posted yesterday suggested that there is help available to allow you some time off. My own feeling is that it may be there but the very nature of caring makes it difficult if not impossible for carers to access until they reach the point of burnout. They simply don’t have the energy to go looking for the help. What help have you found in your area, and how well signposted was it? Was it the kind of help that you needed?

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Carer’s Week 2010 starts today and I will be trying to share something here every day.

Here is one carer’s story, and I think it’s helpful as she describes how she has been able to find support. Although Julie is not caring for someone with cancer, you may be able to find support in a similar way to her.

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Next week is the 10th Annual Carer’s Week in the UK. The theme this year is A Life of My Own, and carers are invited to share what they need in order to have a life of their own. I’ll be trying to keep up to date with the events of Carers Week next week (and I ought to just point out for my US readers that when we use the term carer we’re not talking about a professional, but a friend or family member looking after their loved one in some way – you might use the term caregiver).
Before Carers Week starts on Monday 14th June, I want to have a quick think about why carers should have a life of their own. You may think it’s obvious, but I find that isn’t always the case. Sometimes people comment on my book ‘Their Cancer – Your Journey’ by saying ‘But you’re asking me to be selfish!’ – though in fact what I am saying is that it is not selfish to take care of your own needs. So why should a carer do that – and have a life of their own? Here are my suggestions, feel free to add yours as well.

  1. To help you remember that life is not all about illness.
  2. To give others the benefit of your company if you so desire.
  3. To keep hold of who you are and not lose yourself in your role.
  4. To make sure the person you are caring for is not so dependant on you emotionally that they have problems if you cannot be there.
  5. To make you better able to cope and less likely to lose your cool.
  6. To give you something to talk about.
  7. To ensure that when the caring role ends there is still something left in your life.

Carers are amazing – not because they have chosen this challenging role, but precisely because they haven’t. And even having not chosen it, they keep going against all odds, simply because in spite of everything thrown at them they still care.

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