Living with multiple medicines: Family, friends, colleagues and acquaintances
Most people taking multiple medicines want to manage their own medications, but the help of their family & friends is also important.
It is important to most people we spoke to that they manage their own medicines. However, many describe small ways that people close to them often help, such as reminding them to take their medicines. Other people receive more intensive help from a partner who manages their medicines, or from parents who assist financially or when they are particularly unwell. Adult family members sometimes prompt their parents to ‘do something’ to manage their medicines more effectively; this has led to the use of medication organisers or ‘dose aids’ for a number of the older people we spoke to about their medicines.
People say that a major aspect of taking multiple medicines is how and when to tell family, friends and colleagues about their medicines. There are times when it is an absolute necessity that other people know what they are taking; this can be a difficult task at times, particularly when taking a number of medicines is a new experience.
Most of the people we spoke to have been taking multiple medicines for a substantial period of time and have a number of helpful insights as to how they talk to the people in their lives about their medicines.
Independence in managing medicines
Many people need no assistance and can manage their medicines on their own, which is important to them. Only rarely do they need some assistance to take their medicines, such as with eye drops or another medicine that is difficult to administer. This most often takes the form of a gentle reminder.
It is important to Nancy that she has control over her medicines, as it is her body.
Don receives occasional reminders from his wife to take his medicines, particularly when they are on holidays.
Assistance from others when needed
While many of the people we spoke to can manage their medicines for themselves, there are times when practical help, however small, is still very important. This can be as little as having other people know where their medicines or medicines list is stored in case of emergency. Other people we spoke to receive almost daily verbal reminders to take their medicines before leaving the house for the day.
Some people who have conditions that make them very unwell or forgetful find it extremely beneficial to have someone with them at a doctor’s appointment so they can be an ‘extra memory’ and take notes. This is especially helpful when it comes to accurately recording and remembering what their medicines are for and how to take them.
Some side effects of medicines are made more bearable by having the help and support of family and friends. One participant has a tremor as a side effect of one of her medicines. She is extremely grateful that friends and colleagues will automatically give her a mug at morning tea and pour a glass of water for her at a restaurant.
PT relied on his family to help him establish good medication routines after he had a heart attack. They still offer significant support.
There are also some occasions where more substantial assistance is needed, such as going to hospital in an emergency. Some people we spoke to have a spouse as their regular carer who takes primary responsibility for managing their medicines. This tends to be the case for people with significant physical limitations associated with their conditions, or a cognitive component like increased forgetfulness.
Others we spoke to, particularly younger people on a low income, receive financial help from their family from time to time.
Peter S was not capable of managing his medicines when he was severely depressed. His wife did this for him and instigated his use of a Webster-pak.
The side effects of some of Lyn’s medicines cause her confusion, so her husband has taken responsibility for managing her medicines.
Diana’s wage is low as she is new to the workforce. Her parents have helped her financially with her medicines, as well as provided her with emotional support.
Telling people about their medicines
Many people we spoke to do not feel a great need to talk about their medicines. Some people see multiple medicines as a part of growing older. Thus, medicines ‘come up in conversation’ with friends their own age, but are not a major topic of conversation. Other people find it depressing or intrusive to talk about health-related matters. A few people are careful about whom they tell that they are taking ‘so many medicines’, as they find that telling people changes their perceptions of them and they do not want to be defined by their illnesses.
Micaela finds that many people have opinions about her conditions and how she should be managing them, which is not always helpful.
People often learn about Mia’s condition by seeing her take medicines. She has found that others seem to identify her by her illness, which she does not want.
Some people we spoke to say that talking to people is important if they really have something to share or need specific help or support. Some find it helpful to discuss their experiences with others who have the same condition or take the same medicines they do.
Others are eager to share their positive experiences of medicines with others who may benefit. Furthermore, many people believe it is important that the people closest to them are aware of their condition and the medicines they are taking, even if they are not discussed in-depth. This is important if they are in an emergency situation, as well as simply part of being in an open, trusting relationship.
Don rarely discusses his medicines. However, he told his family and will tell others in similar circumstances about the success of one medicine in treating a painful and debilitating condition.
Glenn thinks it is important that people he works and lives with are well-informed of all of the aspects of his conditions.
Challenges of explaining medicines to people
Even though it is important that the people closest to them know about the medicines they are taking, many of the people we spoke to describe difficult and uncomfortable discussions with their significant others.
Friends and family often feel confronted by the large number of medicines and question their necessity. People who are on medication for mental health conditions, or who experience side effects that affect their cognitive functioning, are sometimes not taken seriously if they are upset or angry, with their condition or medicine being blamed.
Some side effects are also highly visible to others and can be uncomfortable and embarrassing to explain.
Helen has had to reassure her spouse that she is taking an appropriate number of medicines. At work she is able to make a joke of them.
Glenn says there is a downside to having people around him aware of his condition.
Diana experienced secretion of breast milk as a side effect of one medicine, which impacted on her social life and was difficult to explain in a way that maintained her privacy.
Talking to children about medicines
A few people we spoke to started taking medicines when they had small children of their own or regular contact with young family members. The children were very curious and would ask open, forthright questions such as ‘what are you doing?’ and ‘what’s that for?’ It was important to everyone who described these interactions that they were honest with the children and reassured them that they were helping them get better.
Peter S believes it was an advantage that his daughters grew up understanding about his medicines.
Sandy explained to her grandchildren about her condition and home haemodialysis. This means they understand that it helps her and that she cannot take care of them overnight when she is on her ‘machine’.
Concerns for how medicines affect people they love
Medicines that can have serious side effects make people extremely anxious for their loved ones, as well as themselves. This is particularly the case for those who became addicted or who have mental health concerns. One participant was deeply concerned that he may have sexually abused his children (who are now adults) when he was first medicated for severe depression. Although they have assured him that did not happen, he is still extremely fearful about how he treated his family at that time.
Lesley suffered memory problems when she was withdrawing from an addiction to Valium. There are a number of important family moments that she does not remember.
Messages to others who care for those taking medicines
We asked the people we spoke to if they have any suggestions for others about discussing their medicines with other people. They also describe what is helpful from people who are close to them concerning their medicines.
Glenn feels that people who are close to those who take multiple medicines should be patient, understanding and communicative.
Russell believes it is important to find someone who is non-judgemental and able to offer practical support.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
