Hello everyone.
Today’s post has advice about some of the practical issues you might have to deal with as a carer. There are quite a lot of topics covered, so you might find it helpful to skip to the sections that are relevant to you.
Within the Cancer information section of the Macmillan website we have more information and advice about these practical issues and the side effects of cancer and its treatment. I’ve added links to these pages throughout the post, which can follow if you would like to find out more. We also have a video of Macmillan's CEO, Ciarán sharing his experience of caring for someone with advanced cancer.
This advice has been written by other carers of people with cancer and has been taken from our booklet Hello, and how are you? A guide for carers, by carers.
You can download the full booklet and find out more about how Macmillan can help carers. You can also join our carers group to connect with other carers and to share support and advice.
The advice in this post comes from carers’ own experiences.
Practicalities when you're caring for someone with cancer
‘You may feel overwhelmed by the circumstances and inadequate for the task but you will gain knowledge and skills with the passing of time and amaze yourself in your achievements.’
Sue
The topics covered are:
There is a whole range of practical issues you will find yourself having to deal with as a carer. Day-to-day activities, such as housework, handling finances and personal care, are all important parts of caring for someone with cancer – and may be things you have not had to tackle before.
The practical help you give the patient can help you feel more confident as a carer. For example, if you can do small practical things to help the person you are caring for feel more comfortable, this can make you feel better too.
We have put together some tips about taking on practical tasks that may be new to you.
Food and eating
If possible, speak to a doctor or nurse about getting advice on food and liquid from a nutritionist.
The patient is likely to have changes in their appetite, so try preparing smaller meals more frequently for them.
You can make small meals as energy-giving as possible. Try things like milk powder in mashed potato or high calorie drinks. You could also add food supplements to the patient’s portion of family meals.
Try not to make a big issue out of food and mealtimes. You could try to take the patient’s mind off eating with distractions like television. Always ask them what they fancy to eat and try to include them in family mealtimes. If the patient really doesn’t want to eat, accept it. We have more information and a slideshow about the things that can help when a person has a poor appetite.
Moving and handling
We found that learning to move and handle the patient safely was beneficial to the patient and ourselves. Ask your GP or district nurse where you can get advice about this.
If a patient’s balance isn’t good, they may need your help when moving around. Make sure you do this with care, and discuss with the patient what help they want from you.
There are aids that can help you cope at home; ask at your hospital if you can speak to an occupational therapist about them.
Homemade aids can be very useful. For example, a plastic carrier bag on the car seat will help the patient to swivel in and out of the car, if you don’t have a special cushion.
Find out in advance what is offered locally by emergency services in the event of the patient falling or a similar accident.
Organising equipment and transport
Ask the hospital or local Social Services department about household aids and wheelchairs. Organisations such as the Red Cross and Age Concern can also supply these items.
Grants may be available from Macmillan for expenses like equipment and transport. Call us on 0808 808 00 00 for more information.
Plan ahead. Take advice from health professionals about what you might need in advance so the equipment is there when you need it.
If you think that you are being supplied with equipment you won’t use, make clear to the appropriate person that you do not need it. Unnecessary equipment can clutter a house and be an inconvenience.
Availability of drugs
It’s good to be aware that not all pharmacies will stock the drugs the person you are caring for needs. Speak to a pharmacist about ordering in drugs.
Pain control
Try using a tablet box so you can separate out all the pills the patient needs to take that day. Keep a chart which shows all the pain relief being taken. It will help you develop a pattern that works.
People are often advised to take regular doses so the pain relief is always in their system. Make sure the pain relief is taken as advised by the doctor.
Tumours will sometimes put pressure on nerves which can be very painful. Let the patient’s doctor or nurse know if the pain isn’t well-controlled.
You may worry if the person you are caring for is taking high doses of strong painkillers. It is important to remember that the right dose is the one that controls the pain, and this can vary. We have more information about controlling cancer pain, which might be helpful.
Clinical trials
Clinical trials are medical research trials involving patients. They are carried out to try and find new and better treatments, including for cancer. If you and the person you are caring for would like to find out more, see the clinical trials section on our website.
Personal care
There are a number of things you can do to make the person you are caring for more comfortable.
In the bath you could use a towel under the patient’s arms and make a bath cushion out of foam and tied plastic bags. You could also put a towel on the edge of the toilet seat so that the patient can sit down more comfortably.
If required, try using a plastic urinal, commode or bowl so that the patient doesn’t have to leave the bedroom to go to the toilet.
Carry a thin foam cushion in a bag that you can discreetly put down to make the patient more comfortable when they are out.
If the patient has problems leaving their bed, you could help them shave or wash their face with a bowl and mirror.
Consider buying a sofa-bed for the living room so the patient can lie down in the day and watch TV, see friends and be part of family life. This also means you don’t have to run up and down the stairs to take them food, etc.
Investing in a high-quality adjustable bed can bring a lot of comfort to the patient and you. A Macmillan Grant may be able to help with the cost of a bed or other items that will improve the quality of your life or the patient’s.
Dealing with practical chores
Try to prioritise – do what has to be done to keep the house hygienic and don’t worry too much about the rest.
If you don’t usually do the housework and cooking, ask the person who does to teach you about these tasks. Ensure you’re getting all the benefits and other financial help you are entitled to (see Household finances section) – this may help to pay for a cleaner or a gardener.
Household finances
Due to the patient’s illness, you may need to manage household finances, if you weren’t already. This may seem daunting, but there is a lot of advice out there to help you deal with utility companies and banks.
Your local Citizens Advice can provide you with advice. You could also call Macmillan, the Carers UK helpline or go to a local carers’ centre – find yours by searching on their website.
Having cancer can be expensive for both you and the person you are caring for. There can be extra costs such travel to hospital, and as a carer, your income may reduce because you have to give up work or reduce your hours. However, there is help available, including benefits, tax credits and grants. This includes help to meet NHS costs, such as travel for hospital treatment, prescriptions, wigs, dental treatment and glasses and sight tests.
Always ask for help when you need it. The health and social care professionals involved with the patient will be able either to give you advice and information on benefits and filling in forms or to put you in contact with someone else who can help.
You can get details of local benefits advice services in your area by calling Macmillan. Also, your local Social Services or Social Work department can put you in touch with a social worker or benefits adviser.
Macmillan can offer you advice and help you to access benefits and other kinds of financial support. We can also help you fill in benefit claim forms. Call free on 0808 808 00 00.
Citizens Advice can help with benefits advice and form filling. Your phone book will have details of your nearest bureau, or visit their website for more information.
Carer’s Allowance is the main benefit you may be entitled to. You need to care for someone for more than 35 hours a week to receive it, so it’s handy to keep a diary of all the time you spend caring. This can help with your application for Carer’s Allowance. There is also a new Carer’s Credit which enables carers to build up qualifying years for the basic State Pension, the additional State Pension, and Bereavement benefits.
For more information, contact your local benefits advice service or call one of the helplines mentioned above. You can also find information on financial support for carers at the Directgov website in the `Caring for Someone’ section. In Northern Ireland, see nidirect.gov
People with cancer in England are now entitled to free prescriptions. Your GP surgery or oncology clinic can advise on how to apply for an exemption certificate. Prescription charges for people with cancer have been abolished in Wales, and are going to be abolished in Northern Ireland in 2010 and in Scotland in 2011.
The patient may be entitled to a disabled parking badge for your car to use when you are taking the patient out. Contact your local Social Services or Social Work department for more information. You’ll find the number in the phone book.
If you or the patient have to give up work and your income falls, you may be eligible for a tax refund. To find out, contact your local HM Revenue & Customs Enquiry Centre – see the phone book. If your circumstances change, it is also worth asking if you are paying the right amount of tax.
If the person you are caring for is dying, try to get all financial papers in order. The hospital, your Jobcentre Plus or Social Security office may have helpful leaflets.
If you feel it is a subject you can raise, find out whether the patient has made a Will.
Other ideas
The Carers UK website has a lot of information about benefits you may be entitled to.
The Jobcentre Plus website has useful information about financial help, including Carer’s Allowance. In Northern Ireland, see dsdni.gov.uk
The Directgov website has useful information about money matters, including direct payments and pensions. In Northern Ireland, see nidirect.gov
Check life insurance policies – some pay out on diagnosis. If you and the patient look through your policies, you may find that you are covered for loss of income, medical treatment, credit cards, mortgage payments or other expenses.
If your caring role ends, it is important to let your Carer’s Allowance Unit (Disability and Carers service in Northern Ireland) and other relevant benefits offices know about the change in your situation.
This will help you to avoid major problems further down the line and find out what benefits you can claim now. You can also call us for advice about this.
If you have a low income once your carer’s benefits stop, you may be able to claim other benefits.
Side effects of treatment
Treatments for cancer can have some unexpected and uncomfortable side effects. Ask your doctor and other health professionals about what kind of side effects the person you are caring for may experience and how they can be managed.
If you have an idea of what to expect, it will help you to tell the difference between a normal side effect and something more serious. This can reduce unnecessary trips to hospital and save you a lot of worry.
But remember, side effects vary from person to person, and they are not always possible to predict.
Being prepared for the effects of treatment, such as a dry mouth, nausea or constipation means you can learn about ways to handle these problems. Being able to alleviate some of these side effects can help you feel you are doing something positive to help the person you are caring for.
Not all of us knew what side effects to expect, or ways we could handle them; we urge you to find out as much as you can.
Here are some of the common side effects the people we were caring for experienced – it’s not an exhaustive list. The tips on treating these side effects are things we found worked for us.
Dry and sore mouth
Indigestion, nausea and vomiting
Constipation
Thrush
Hair loss
Other side effects of treatment
Seek medical advice about sex during treatment.
Cancer treatment can seriously reduce a patient’s natural immunity. So visitors shouldn’t see the patient if they have an infection. If someone has been recently immunised, check with your GP if it is safe for them to visit the patient.
Breathlessness can be a problem with certain types of cancer.
You can also call Macmillan’s cancer support specialists for advice on 0808 808 00 00.
Other ideas
A local Crossroads scheme may be able to provide you with practical help around the house.
Your local carers centre may offer training to help you with caring – such as first aid, and moving and handling.
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Once again I hope that this information is useful if you are caring for someone with cancer.
You can read previous posts written by carers about:
Please let us know if you have any advice that might be helpful for other carers. You can comment on this blog post.
Best wishes,
Libby
