Every day people are taking care of their sick loved ones. According to HSE, more than 1 million people suffer from a chronic disease in Ireland.
Even if your GP or specialist knows a lot about your disease and how to take care of you, what happens outside of the medical area must not be overlooked. That is why family, friends and/or partners have a key role in the management of a chronic disease.
So if you are one of the above, what words best describe your situation? How do you offer your help? How do you react to the loved one’s frustration? How do you help without becoming exhausted?
Being there is also about supporting
To help a person in his/her illness, first we have to listen and offer our time. Let them know that we are here, and that he/she matters.
“It is essential that the patient attends his important medical appointments with someone supporting him. Especially when these appointments are expected to deal with screening results” says Dr Quenneville.
Communicating is also inspiring
Everybody can be helpful, including people who are already suffering from a disease: by sharing their experience for example.
“Our first patient forum gave me the first opportunity to talk to others face-to-face, outside of my family HHT circle. To hear the shared challenges, emotions, concerns, etc made it seem much more manageable! To be able to share some of the products that I used was also good.” says Dara, an HHT Patient and founder of HHT Ireland.
Timing is everything
Furthermore, some people can react differently when learning about a loved one’s disease. Denial? Taboo? Call it as you want but it can freeze the atmosphere and lead to an awkwardness in the relationship. And this doesn’t help the patient.
It is very understandable to go through this reaction, and both, patients and relatives go through a process of accepting and understanding what is happening.
Letting time take its course allows everyone to begin a reasonable and calm conversation.
Get interested in the disease:
If someone you love is suffering from a chronic illness, learn about the disease, it will help you to understand better.
Having even a basic knowledge of the disease that affects your loved one will enable you to have more constructive conversations about the subject.
If the patient allows you to attend his/her medical appointments, then it’s a good opportunity to ask questions to the doctor. This will help you to better understand the challenges of the disease and be more attentive to the different ways of supporting your partner.
Keeping the right distance is healthy
It is important, as a carer/relative not to enter a symbiotic relationship with the patient for two reasons:
First, because keeping a certain distance with the patient is necessary to keep a cool head and helps you stay useful, patient and efficient. It also protects the relationship you have with this person.
Also, we have to keep in mind that the loved person needs to continue to be considered as a person and not only as a patient.
According to psychologists, people suffering from a chronic illness go through a succession of losses: possible loss of a job, impaired role within the family, reduced independence, loss of physical integrity, etc.
Chronic illness affects psychological health and self esteem in patients. Hence, in addition to the physical aspects it is also necessary to focus on the psychological health of the loved one in order to ensure their complete trust and thus help them.