Caring for someone with lymphoma

If someone you know has been diagnosed with lymphoma and is relying on your care it can be difficult to know what to do. People with lymphoma may need some help with practical day-to-day activities when they are not feeling well. But helping them deal with the emotional burden of the disease can often be just as important for their well-being. It is not easy to know what to say or do in this situation and there is no ‘right’ or ‘wrong’ approach. Of all the people who are caring for your friend, relative or partner, such as members of their healthcare team or local support groups, you will probably know them best. So your insight into how they might be feeling could help you make a valuable contribution to their care. For example, it’s natural to feel that you need to keep your partner, relative or friend ‘cheered up’, and there will be times when this might be exactly what they need. However, there may also be times when being cheered up is the last thing that they want, and a sympathetic listener could make all the difference. The most important thing you can do is just be there and make time to listen and provide practical help if it is needed.

What Will Happen to My Friend or Relative Who Has Lymphoma?

What your friend or relative will experience while they have lymphoma will depend to a large extent on the type of lymphoma that they have. Typical symptoms of most types of lymphoma include tiredness, breathlessness and night sweats, as well as the appearance of lumps or swellings. However, many people with lymphoma can spend long periods of time with few or no symptoms, and may be able to carry on almost as normal during these times.

In treating lymphoma, the aim is to help people lead as normal a life as possible while they have the disease. As most people will have some sort of therapy, or maybe even several rounds of therapy, getting back to normal after therapy is very important.

It is also important to bear in mind that everyone’s experience with lymphoma is different. So although this Web site can give you a good picture of what happens to most people who get lymphoma, this may not apply to the individual that you know. Treatment types can also differ from province to province or hospital to hospital. Therefore, the best place to go for advice on what to expect are the members of the healthcare team who are looking after your relative or friend.

Working Together with The Person You Are Caring For

Caring for someone can be very difficult for you, but remember, being cared for can be just as difficult. You will need to work together to find the best way forward, without either of you feeling as though you have no control over your own life. The most important thing you can do is talk to your friend or relative about how they are feeling and what they need from you, as well as what you need from them. And remember that their needs may change at different times of their illness, so being flexible can be quite important.

There may be times when a person with lymphoma needs a lot of care – when they are going through treatment or experiencing symptoms, for example. But there may be other times when they are relatively symptom-free, and both of you should take these opportunities to get back to normal as much as possible. Be sure to read the section on practical tips to think about when caring for someone with lymphoma.

Part-time Caring for Someone with Lymphoma

Caring for someone with lymphoma can be difficult if you also have to work yourself, or you cannot reside with your friend or relative. Many people can feel worried or guilty about leaving the person they are caring for alone. However, there is nothing for you to feel guilty about – you have a life to lead too. It is important to remember that you have to be able to keep up with your own life and responsibilities so that you can continue to do the best that you can for your relative or friend over the long term.

It is a good idea for you to inform your employer about the situation at an early stage, rather than waiting until there is a problem. Employers are usually very understanding, and may be able to organize flexible working hours and working from home.

People who live a considerable distance away face a difficult dilemma. They can feel that they are letting their loved one down, and putting pressure on those who live closer by not being able to visit as much as they would like. However, people with lymphoma understand that their friends and relatives may not always be able to give as much support as they would if circumstances were different. Something as simple as a card, e-mail, or phone call can make a huge difference and lift their spirits.

How Will We Cope Financially?

Being diagnosed with a serious illness such as lymphoma can have a big impact on a person’s finances, as it is likely that it will affect their ability to work, at least in the short term. You may have also decided to give up your job or work fewer hours in order to care for your friend or relative, which will inevitably affect your finances as well. On the other hand, this is obviously not possible, or appropriate for everyone who needs to become a caregiver.

Some patients with lymphoma are entitled to various benefits, depending on their circumstances. If you or the person you are caring for are employed, you should each discuss the possibility of assistance with your human resources department at work. Although the clinical nurse specialist, family doctor or specialist doctor will probably not be able to help directly, they might be able to give advice on where to go for information about coping financially if you’re caring for someone with lymphoma. Your local support groups may also be able to provide relevant and up-to-date advice.