Receiving a diagnosis of mesothelioma instantly changes the life of a patient. They have already been poked and prodded, undergone numerous x-rays and scans and possibly had chest drains and biopsies, and now have to make decisions on treatment and how they want to fight the disease. The focus is very much on the patient and rightly so, but there are other people whose lives will be changed drastically by the diagnosis and their relationship with the patient may need to evolve.
Becoming a caregiver
In the initial stages after a mesothelioma diagnosis, patients can be very well, still able to work and do everything for themselves. As the disease progresses, they will require help and assistance, be it transport and company for medical appointments, having meals cooked or help getting up and ready in the morning.
Whilst there may be help available through the NHS and private agencies, many spouses, family members or close friends choose to take on the role of caregiver. For some, it is a given that they would take on this challenging role but there are some factors that should be considered before making this decision.
Tasks of a caregiver
What is needed from a caregiver varies from patient to patient and depends on the stage of their disease. Tasks may start off with chores such as doing food shopping, taking them to medical appointments, gardening or doing laundry. Further down the line, tasks may progress to helping them wash and get dressed, assisting them around the house and putting them to bed at night.
Many people will have a number of people who offer assistance and are likely to have a primary caregiver who is the main person helping them.
Share the jobs
It is important to remember that all the care and assistance a patient needs does not have to be provided by one person, tasks can be shared out to a number of people. There will be certain tasks that some people are more comfortable doing and that the patient will be more comfortable accepting help from. For example, a patient may feel more comfortable with their spouse helping them wash, rather than another family member. That doesn’t mean the other family member cannot help, they could make some meals, which could also give the spouse a break as they can have their dinner made for them.
It may help for the primary caregiver to meet with all those who want to assist to find out their strengths and what tasks they would feel comfortable and confident doing, this allows them to know who they can assign tasks to without feeling that they are putting on the person.
Take time for yourself
For caregivers, the focus is always on the patient but it is important that they are able to take time for themselves. If they are exhausted and not taking care of themselves, they will not be able to effectively assist the patient. It is important to look after yourself as well.
Use a support system
Being a caregiver for a patient with terminal cancer is emotionally draining. There will be good days and bad days and when the disease is more progressed, everyone will be physically and emotionally exhausted.
It is important to acknowledge your emotions and have someone who you can talk to about what you are going through. It is likely that caregivers will not want to discuss this with their patient so it is good for the caregiver to have a support system they can use as an outlet for their emotions.
Utilise all available resources
There are so many resources available to patients and caregivers, make use of them as much as you can. Ask the treating medical team for any local contacts that may provide assistance. Join support groups, you can get so much helpful information from people who have been through or are going through the same process as you.
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