Cancer is tough for the patient, but it’s also tough for those who care for them. It brings so many changes and challenges, and the carer is often as unprepared as the patient. Where does the carer go for help? Many hospitals have cancer support groups, open to both patients and their carers. There are numerous websites such as inspire.com and cancergrace.org that provide information, experience and support to patients and carers. You could contact your local cancer council or other cancer support organisation for help in finding support for carers. And you will find a wealth of informed practical wisdom in Being a Cancer Patient’s Carer: A Guide by Wesley Finegan.
Every person struggling with cancer relies on having carers. These people may be professionals such as specialists, nurses, and pain managers. They may also be personal friends or relatives, often a spouse or an adult child. A competent and compassionate carer is a great blessing. I am especially blessed to have a loving wife, who keeps herself well informed about the disease, treatments, possibilities, alternatives, and more. But then, not everyone with cancer is married to a doctor ;).
Finegan’s book won’t necessarily make someone compassionate, but it will go a long way to making someone competent as a carer. It’s hard to think of an author with greater credentials to write on the topic. He has ‘MB BCh BAO MRCGP MICGP D Pal Med’ listed after his name! I’m not sure what they all refer to, but they sound impressive. More impressive again, is his experience. He worked in General Practice with a special interest in caring for patients with cancer. This led him to become a consultant in palliative medicine. In 1994 he became a cancer patient himself and in 2003 his wife developed cancer and he became her carer. These experiences have taught Finegan much and he generously shares his wisdom in this book.
This guide is intended for practical use. It’s well constructed and easy to follow. Each chapter – and there are 43 chapters, each roughly 4 pages long – is constructed around the acronym TANDEM. They begin with some basic facts to help people understand the particular problem being addressed and then the acronym is used to examine various issues from different perspectives:
You are facing new situations regularly as a carer. Hopefully I can help you think through the issues you might have to face.
There is so much to learn. Where does one start? What do you need to know and who can tell you the answers? I’ll try and help you with some of the questions I have asked.
Making a note of a relevant detail now might save you a lot of difficulty remembering those elusive facts in a weeks’ time!
Here I will offer you some practical ideas that have been tried and tested by my patients and some that worked for Alice and me.
Sometimes we want to know more or find out about something we would like to know about. I’ll try and guide you to the best sources of information.
M More information
If there is something that has not been said already and it’s relevant, you’ll find it here. (pages x-xi)
I’m not aware of any other books for carers that are as comprehensive and practical as this one. It begins with the first shock of diagnosis, then addresses a broad range of symptom, treatment, and care issues, before dealing with the difficult matters of failed treatment, dying, death and bereavement. It’s concerned for the well-being of the carer as well as the patient.
It’s probably too much to take in all at once, but the beauty of this book is that it’s so well arranged that you don’t have to. You can read whatever’s most relevant to you and your situation at the time. You’ll find it easy to come back to sections you’ve skipped over, if and when they become relevant. And you can follow the links and suggestions for more information or advice when needed. I would suggest consulting it regularly as different issues arise. Flick through the table of contents so you can see the scope of the book. It would also be useful to annotate the book with your own questions and observations, so that you can follow things up with the relevant people at another time.
If you are caring for someone who is going through cancer, then I highly recommend you get yourself a copy of this book. If you have cancer and want to support your carer, then you could purchase a copy for them. It’s readily available on line so you don’t need to worry about what bookshop to look in. You’ll appreciate it and so will they. Just let them know when you give it to them, that they’re doing a great job and you wanted to show your appreciation by giving them this book!
2 thoughts on “Being a cancer patient’s carer: A guide”
In a lighter vein, a book I found really helpful was ‘The Selfish Pig’s guide to caring’ by Hugh Marriott. It acknowledges in a self depricating British sort of way all those guilty thoughts you have (about how you would rather be doing a hundred different things than what you are doing) and the fact that often what you find funny in a situation probably isn’t funny to most normal members of the population. My husband found it in the library after my mum died -I wished I had been able to read it at the time as it was quite liberating.
Caring isn’t all honourable. In some ways I wish I hadn’t had three years of my life consumed by it. Death and the process of dying are truly awful. And while you are dealing with that unpleasantness life continues to march on – some friends move on to greener pastures as your life is too difficult, others make you cry with unexpected insights and acts of kindness when you need it most. I don’t know how anyone would cope without the hope we have in Christ – which is probably why many in society look to euthanasia as a solution.
I also had much more grief at the time of the cancer diagnosis than at mum’s death, but you just have to pick yourself up and deal with the practicalities – surgery, chemotherapy, endless medical appointments, working out the best places to park near the hospital so you won’t get a parking ticket when you are unexpectedly delayed, looking after someone who has periods of feeling normal and then 3 weeks later doesn’t like anything you cook for them and needs you to help them shower and dress, having to have a mental checklist of their medications in case they are suffering from chemo brain or there was an unexpected hospital admission etc etc, etc.. Being an advocate for someone and making sure they get the best care possible is very tiring. I had hard conversations with doctors and nurses, and on occasions I had heated confrontations with incompetent health care providers. For me there was a sense of releif once the ‘dying process’ was finally over – I felt like a huge weight was off my shoulders – however that left me feeling guilty and wondering whether I was a bit abnormal. I was sad, I did grieve, but I was releived for mum that her earthly body was gone as it really wasn’t that nice any more.