The wife of veteran Hollywood actor Bruce Willis, Emma Hemming Willis, once opened up about her experience in coping with life following her husband’s diagnosis of frontotemporal dementia, a rare type of dementia.
She revealed that dementia wasn’t just hard for the person diagnosed but also for the family.
Dementia is often described as a family disease. This is something Faezah ‘Alaina Ibrahim, a daughter and caregiver of a parent with Dementia-Alzheimer can relate to.
In the latest episode of Sinar Daily’s Life & Style podcast titled "Embracing the caregiver role: Caring for patients with dementia”, ‘Alaina said that when a family member is diagnosed with dementia, the whole family will be affected.
The 33-year-old mother of one and her siblings have been caring for their mother, who was diagnosed with Dementia-Alzheimer a few years back.
This was when dementia, also known as a silent intruder, turned a once familiar and comforting relationship into an emotional turbulence.
With the hallmark of dementia being memory loss, the most basic everyday tasks become a struggle for the patient, which is mentally and physically challenging for both patient and caregiver.
As children and caregivers, ‘Alaina said that when handling dementia patients, an utmost level of patience is required.
"All of us are working so sometimes when you come back home feeling tired and at the same time you have to deal with her condition, you become impatient yourself.
"There will be some situations where you accidentally raise your voice. That’s challenging because after that you’ll feel guilty.
"You can’t raise your voice to your mother but without do so, it’s hard to make her understand. So it’s a rollercoaster of emotions,” she said.
"You’ll start to question yourself - when will I learn how to be patient? When will I actually be useful for her?”, said ‘Alaina.
‘Alaina also shared that her mother has developed a deeper level of anxiety and paranoia, often asking her children to stay at home and not go to work, just so they could accompany her.
While they do their best to ensure their mother isn't at home alone as they juggle work and other responsibilities, 'Alaina said she and her siblings are in the midst of hiring a full-time caretaker.
TEAM EFFORT
The demanding nature of caregiving can lead to exhaustion and burnout. To avoid this, Alaina and her siblings set up a system whereby they would take turns weekly to look after their mother.
"This allows us to have a little bit of space in between. It’s important for us to communicate clearly with one another because you can’t just dump the responsibility towards one person, they would go crazy.
"Everybody needs to be cooperative and work together,” she added.
Watch the full episode of "Embracing the caregiver role: Caring for patients with dementia” on Facebook, YouTube or listen to the podcast via Spotify, Google Podcast, and Apple Podcast.