Dragon Boat art work
I fell sick yesterday. I was struggling when I worked on Monday. Took medications for my gastric and ate lunch at 12.30pm. However, my condition did not improve. The next morning, I developed giddiness on top of my gastric pain. I struggled to bring my mother to catch a taxi to the day care centre.
I read of caregivers who devote 24/7 to the caregiving of their loved ones. I sometimes felt I should not feel guilty if I do not devote 24/7. It does not mean I love my mother any less.
She has become more convinced to go for Dementia Day care more frequently, increasing from twice a week to thrice a week. Last she was very excited to attend Day Care because she was involved in the Dragon Boat Festival, which was celebrated by the Chinese Communities worldwide each year. As she used to sew pyjamas and pillows for us when my brother and I were young. She was very thrilled when she was asked to sew the dragon's coat which the young children did a performance with it. A sense of achievement was on her face, her face glowed as she saw the finished product and she was so motivated that she worked days in the day care sewing the product.
I am just amazed what she can do. Even dementia has slowly cause her forebrain to slowly deteriorate, somehow it is amazing to see her other parts of the brain compensate and become more active. Her creativity, her determination did not stop even as her disease progress.
Even yesterday, she came back with an acrylic art work which she would not have time to do when she was younger. Her priorities then were to work and earn enough to provide for my brother and I.
Though I was sick, I was grateful for the 8 to 4pm Day care services that offered me respite. When my body broke down, it is time for me to fully rest. Though I struggled with a restless mind but with a body that needs to be fully lie in bed, the mind began to quieten with time too.
As I watched the documentary "Living Dementia- NHK Documentary, Dr Kazuo Hasegawa had devoted his life to research in dementia. He established the Hasegawa Dementia Scale for early diagnosis and advocating for changing the name of the disease to eliminate social stigma. As the number of people above the age of 65 increases in the world, it is expected that the number of people living with dementia will increase. Just like previously cancer is a disease feared by all, with advances in medical technology and medications, a lot of people are cancer survivors and are able to lead normal life while in remissions. Though dementia has a trajectory of 11 to 20 years generally, unlike cancer, it cannot go into remission but the deterioration can be slowed down.
I believe the early interventions that have been offered to my mother like the occupational and physiotherapy, the community support at the day care, the social support offered when my family moved in with her four years. We had made a difficult decision to uproot ourselves from overseas and come back to stay with her.
Now, I am seeing the fruit of our labour. She stopped falling frequently, she has established a routine and her social circle of friends and support has expanded.
Though I was unable to carry out caregiving duties yesterday, she is able to be engaged at the day care. Her emotional cup is filled by doing things that she loves and her needs are met. My husband cooked dinner yesterday night and we are able to have our meals together.
Can a caregiver fall sick?
Yes.
What should one do to prepare for a sick day for caregiver?
If despite of all the best efforts of keeping myself healthy, I still fall sick. I must not feel guilty. A caregiver must give himself time to rest. A social support system should be in place for the caregiver so that when this happen, the caregiver can quickly recover and resume his duties again.
Engage day care services
Extended family should be roped in to provide temporary but pre-planned respite.
Some may consider paid caregivers to provide regular respite. Respite should not be seek only when one caregiver is burnout. It should be planned for.
If caregiver develops a chronic illness that needs long periods of recuperate, long term nursing care should be considered.
During the sick leave, the caregiver must rest. Rest from physical work and mental fatigue. Relinquishing and accepting that this journey requires sacrifice and planning to run it as a marathon.
How not to fall sick?
Work life balance. Accepting that one cannot do it all. Reducing unnecessary stress and expectations on oneself.
I had turned part time so that there is more time and energy devoted to better caregiving for my mother. Yet it is a struggle as my self worth is based on the key performance indicator (KPI) met at work which require me to do more special projects and mentor more people.
In contrast, there is no KPI in caregiving work. It is not paid. There is no appreciation by my mother. She is unable to verbalise her gratefulness. However, I know when she is happy and fulfilled.
For caregivers who work 24/7, there should be paid leave and sick leave. Too much stress can cause caregiver to fall sick.
2. Efforts to promote healthy living for caregivers
Consuming healthy meals, regular exercises and social support is crucial for caregivers to continue to thrive in this journey of caregivers.
3. Removal of stigma of dementia
There is something beautiful about dementia, the creative portion of the person is enhanced as we engage the person with arts and craft, with music and person-centred care, engaging the person with the skills they have even before they have dementia, for example, sewing, singing, gardening. Helping the caregiver see this journey as not burdensome but one that can be joyful and meaningful.
Let us not give up. Let us be kind to ourselves. If we do fall sick, take time to rest. Let us be thriving caregivers.
Acrylic painting done: A cat behind the leaf.
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