So…someone we love has been diagnosed with a certain condition that needs ongoing care, and we find ourselves unexpectedly assuming (or being assigned) the role of a caregiver.
How do we go from here?
As caregivers, our natural instinct is often to prioritise our loved one’s safety above all else. Our world may start revolving around the newly established care routines as prescribed by the professionals. What medications, how many, and how often? What food is to be avoided? What about the daily routines of sleeping, toileting, bathing, etc?
What can’t he or she do? How can I afford the therapy and medicines?
Soon our minds start to be preoccupied and even obsess with fulfilling these care routines and tasks amidst our own busy schedule and multiple responsibilities. We become hypervigilant to monitor our loved one’s symptoms, and we often beat ourselves up if something unexpected happens.
We feel somewhat satisfied when we manage to complete our tasks for the day, but we may start noticing fatigue, stress, and burn out soon setting in, especially if we feel incapable of ensuring that the prescribed care routine is followed.
How else can care-giving be approached?
Just in the domain of elder care, it is estimated that there are over 210,000 caregivers and counting in an ageing Singapore, with some 70 per cent of them aged 40 and above. Segmented studies have revealed that Singapore’s caregiver population is certainly facing higher mental health risks. (Ng, 2019)
Being time-strapped and having financial constraint are some of the main contributors to the stress experienced by caregivers. However, there are other factors that are often overlooked in the process of caregiving: the personhood of our loved one post-diagnosis.
Focusing on the person
Upon receiving a certain diagnosis, our loved one’s identity is often overwritten by the newly received diagnosis, and this might also take away their voice, opinions, experiences, as well as needs, including psychological needs.
Some caregivers work hard towards acceptance of the loved one’s condition, but at times overlook the much needed acceptance of the person him/herself in the process.
As an example, in the case of dementia diagnosis, spouses/ children of persons living with dementia often resort to systematically disengaging their loved one from his/ her usual routine and from society, in a bid to keep them safe and protected at home. In the cases of young-onset dementia, many patients were still working when they sought diagnosis for cognitive impairment symptoms, and found their world shut down upon receiving the final verdict from the medical team. Jobs are often lost…which leads to a shrinking social network…which leads to disengagement and lack of the much needed meaningful stimulation. At home, their routines and responsibilities are often taken over, as it is perceived to have become too risky to let them carry on with their usual activities. Despite the promise of safety, such disengagement typically is likely to lead to other issues including emotional, psychological concerns, and even physical decline over time.
What is often overlooked is that everyone, including people with dementia, have key psychological needs that are essential to their being.
Tom Kitwood’s framework of five psychological needs of people with dementia reflect that the needs of people with dementia remain the same despite the diagnosis. Just like the caregivers/ people around them, they want to be connected and experience positive attachment, they want to be included and have a sense of belonging, they want to have meaningful occupations (learning, working, hobbies), they want to maintain their sense of identity, and they want to feel comfortable and safe.
With this knowledge and insight, we may progressively be more mindful in our care approach and tasks prioritization. Some questions we can start asking ourselves are for example:
- How can my loved one and I feel more connected? How can we experience love and attachment beyond the caregiving routine?
- If my loved one is resisting care, is it because he/ she is physically uncomfortable? Is there a way that the environment can be made more comfortable?
- How can we remain together as a strong unit and ensure that my loved one feels included as the way it always was?
- If my loved one’s mood is bad and negative, is it because he is not well engaged? Is it due to lack of meaningful activity?
- How does he/ she see himself as a person? How can I support that sense of identity and sense of self?
- What does he/ she need at this very moment?
- Does it matter if we “break” the rule once in a while?
By focusing on the personhood of the patients, caregivers may find the journey of caregiving more pleasant as stronger connections are built, and the focus is shifted from tasks to needs. Frustration over resistance to care, and missed routines can be alleviated through the understanding of our loved one’s needs and unmet needs. This is more likely to lead to a more positive caregiving experience and outcome in general.
Turning to yourself
Lastly, knowing what our loved one’s needs also requires attunement to our own needs and emotions. Beyond our role as caregivers, we are humans first. If we are able to hold the space and try our best to meet the needs of our loved ones, we should ask if we have done the same for ourselves.
Most of the time, we want to be competent caregivers. We want certainty and assurance. However, we do not always have those within reach, and we may experience negative episodes and circumstances from time to time.
When that happens , let’s ask ourselves: What do I need at this moment?
Kitwood T. (1997). Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.
Ng, Desmond. (2019, May 5). When caregivers are burnt out, who cares for them?. Channel News Asia. https://www.channelnewsasia.com/news/cnainsider/when-carers-caregivers-burnout-who-cares-them-ageing-elderly-11504380