We are delighted to have Madam Rohani Bte Rahmat, care partner to her husband living with dementia, give her closing address at the #ADI2020 Global Conference. She shared her journey as a care partner who experienced initial denial and embarrassment of this condition, but subsequently grew to accept it through community support and our Voices for Hope programme.
It is an honour to be given the opportunity to do the closing speech for the 34th Alzheimer’s Disease International 2020 Conference.
I am Rohani, wife and care partner to my beloved husband Muhammad Said, who is diagnosed with vascular dementia.
On 11 August 2018, a full brain imaging (MRI) was done on my husband. He was officially diagnosed with Vascular Dementia. At that time, he was still working as Aircraft maintenance technician. His symptoms of dementia surfaced in March 2017.
Gradually, he started to experience short-term memory and it affected his job performance. Despite his condition, he was deployed to be in-charge of storekeeping. However, a year later, on 31 July 2019, his service with the company was ceased as the work environment was no longer safe for him. The termination brought a negative impact on him and he became very insecure and confused. Up till now, he is still in the state of denial.
For him to regain his confidence, he was assigned by neurologist from National Neuro Institute to attend the Therapy through Work Programme. This programme is initiated by Apex Harmony Lodge. Currently, he is being engaged as assistant gardener. The job scope is to upkeep the cleanliness of Apex Harmony Lodge’s garden. Though this job is not to his favour, he still does it with full commitment. I am very proud of his work ethics.
As a wife and care partner, I regard his condition as my destiny in life. I tried to do self-study and watched YouTube to understand this condition. Fortunately, I got a call from Ruth Wong and Emily Ong from Alzheimer’s Disease Association inviting my husband and I to join its “Voices for Hope” programme.
I found it very interesting and we made arrangement to meet personally. The Voices for Hope programme helped me realised that there are many avenues to seek help. The journey does not need to be a lonely one. I began to understand about the different types of dementia through the participants’ sharing.
I have learnt to be more understanding and compassionate towards my husband. Honestly, before attending Voices for Hope, I was feeling overwhelmed and frustrated. Indeed, I was grieving for the loss of his memory and initially felt embarrassed to share openly to some of my friends. After attending this programme, I realised that there is a need to share and advocate about dementia – people living with dementia and their care partner do not need sympathy but empathy.
Being acquainted with the other participants brought joy in our lives. As we are honest during our sharing, it brings smile and laughter during the sessions. Each sharing is very inspiring and motivating. I realised that I am not alone struggling to cope with the journey of caregiving. It enabled me to identify the disabilities of my husband and help him utilise his remaining capabilities as well. This programme has enabled persons living with dementia and their care partners to be confident and empowered.
Hopefully, this sharing of mine will inspire everyone from all races who are in the same situation to see dementia as medical condition and seek early diagnosis. This echoes the theme of this conference: Hope in the Age of Dementia.
Finally, I would like to thank the ADI2020 Committee for allowing me to share my experiences.
This post was first published on the Dementia Singapore website.