The relationship between a person diagnosed with spinal muscular atrophy (SMA) and their caregiver is a two-way street. It is important to remember that both the patient and caregiver have their individual needs that should be communicated clearly. Irrespective of whether the primary caregiver is a parent, friend, or someone who has been hired to take care of the SMA patient, there are a few important things to consider for a healthy relationship between them. Below are three tips for SMA patients to maintain a healthy relationship with their caregivers-
- Informing the caregiver in advance about any schedule changes
SMA patients should remember that their caregivers, whether family, friends or professional caregivers, have their own schedules and needs. One needs to ensure that they don’t make any last-minute changes without informing the caregiver well in advance. A caregiver plans everything according to the SMA patient’s schedule, and any sudden changes might cause problems with the caregiver’s schedule and routine. It is important to remember that the caregiver is likely to have other jobs, people to meet, and other personal errands of their own. Hence, it is essential to inform the caregiver in advance if there are any changes to one’s schedule.
- Conveying one’s needs clearly
If an SMA patient is hiring someone through an agency or via the Internet, it is vital to know that the caregiver has probably had clients with a wide range of needs, levels of independence, and abilities. Hence, it is necessary for the patient to inform the caregiver about what their specific needs are, what tasks they can do, and what tasks they cannot perform. The best way that a caregiver will be able to help a patient properly and cater to all their needs is by just communicating with them. If one is used to doing certain things in a particular manner, let the caregiver know that beforehand so that they are able to do their job thoroughly by keeping their patient’s needs in mind.
- It is okay to have disagreements with the caregiver
When the caregiver is a friend or family member, fights and arguments are inevitable. However, when one has a fight, a confusion, a misunderstanding, or whether there is a simple disagreement with one’s caregiver, one needs to ensure that this tension does not last. It is important to communicate openly and work together towards solving the problem.