'We felt we had to overhaul our lives': Munah Bagharib and her brother on what it's like having a mum with dementia
'I never realised that it would hit so close to home until it actually did, so it hit me quite hard," says local actress and host Munah Bagharib.
She was away from home when she first got the news from her younger brother Ziyad Bagharib that her mother, then 61, was diagnosed with dementia.
"We didn't know how to react; we were all just kind of stupefied by this piece of news. Like, it was a piece of news that seemed to have a lot of meaning, but none of us could make any sense of what the meaning really was," Ziyad, 28, told AsiaOne.
Getting the diagnosis
The pair revealed that while their mother, Azeezah Aidid, often forgets names and such, it got to a point where she was calling a chair a door. That was when they decided that a doctor's appointment was due.
Ziyad brought their mother, whom they lovingly call Mamreh, to a general practitioner (GP) after a discussion with their family members.
Ziyad adds: "We didn't want to go overboard and scare ourselves too much by going to see a dementia specialist right away, so we went to see a GP who did some preliminary tests and gave us a referral to see a specialist."
It was at the first dementia specialist that they got the diagnosis: frontotemporal dementia, a type of dementia that affects behaviour and language.
Frontotemporal dementia? Progressive non-fluent aphasia? Alzheimer's?
It was at the first dementia specialist that Azeezah was made to do math and cognitive tests such as naming as many animals as she could in a minute.
"She was like, 'cat, dog', and she just froze and couldn't say any more, and I got pretty shaken up by that. I think she (Azeezah) was probably shaken up by that too as it was the first time she confronted the reality that she's undergoing some changes," shares Ziyad.
To gain a better understanding, the family went to see other doctors with Azeezah's magnetic resonance imaging scan in hand.
Different doctors gave them different diagnoses — one said it was frontotemporal dementia, another suggested progressive non-fluent aphasia, and one of the doctors said it looked like Alzheimer's.
"I don't remember what some of those terms mean at all. I just remember the words [as they were] burned into my mind, but the distinctions between all these terms were kind of blurry to us," Ziyad says, adding that they just went forward with the treatment for frontotemporal dementia.
An overhaul of their lives
"The first couple of years were very stressful. I remember in the beginning, we just felt like we had to overhaul our lives, shape new schedules and build new routines," Ziyad shares, with Munah adding that they even made an Excel spreadsheet for various activities.
Munah, 33, adds that the constant changes in her mum's condition — something she says is common among dementia patients — and having to come up with new ways to adapt also took a toll on them.
"You're always at this heightened stage of like, 'What's coming next?'"
"Being thrust into this caregiver role is not something you see coming, it's not something you decide to become, but all of a sudden, you return from a doctor's appointment and you're a caregiver for someone with dementia," says Ziyad, who was in university at that point in time.
"It's a big thing. It makes you ask all sorts of questions about how you should be allocating your time, energy and everything."
Munah, who was already a well-known local comedian and host then, reveals that she also had to do a massive restructuring of her schedule so she would get to spend more time with her mother.
And while Munah didn't let her personal life affairs affect her professional life, she confesses that she was afraid to talk about it.
"I always think that if you say it out loud, you're kind of acknowledging it. So for a while, I think I didn't want to acknowledge it just yet.
"It came to a point of time where I thought it is important [to share], because there are so many other people going through similar things and they, as caregivers, may not have a community they can depend on. That's why I want to try and build [a community] so they know they're not alone in these things," shares Munah, who is currently the ambassador of Dementia Singapore.
As a caregiver herself, Munah wants all those in a similar position to know that caregiver's guilt is real.
Explaining that caring for her mother can sometimes be "kind of repetitive", she confesses that she finds herself "just going through the motions" sometimes.
"Sometimes I don't have it in me, or I don't have the energy to be [a positive presence], and I wish I could be that all the time," shares Munah.
With four years of experience being a caregiver, Munah now understands that taking time to herself is also important: "You need to know that how you feel is absolutely valid at this point. Sometimes you just need to recharge and then come back because you do need to be that source of positivity."
"Sometimes I [also] think about whether I could have done anything to prevent it. So even on the first day that we got the diagnosis, I just kept thinking like, what could I have done, but there is also no point in having to look in the past and say, 'Oh it's my fault that I didn't do enough of these.' At the end of the day, it's all about moving forward. It's just something you have to live with," she adds.
Her brother also shares the same sentiments, but adds that he has had even more "irrational" thoughts.
'There's a guilt that just makes no sense, but when I realised she (Azeezah) couldn't even do mental sums, spell her name, tell the date, or stuff like that, I would feel guilty for being able to do those things.
"Like, why should I be able to do this, and why should that ability be taken away from her — it's super irrational," Ziyad shares.
It was in 2017 that Azeezah was diagnosed. Four years on, her symptoms have worsened, but the siblings agree that her quality of life is way better.
"Obviously there are things about the condition that make her day-to-day life quite frustrating, but there's many other things in her day besides that (her illness)," the siblings share.
For example, she still lights up whenever they have meals together as a family of four and even makes her favourite coffee for them.
In contrast to how they were in the beginning, trying to force fit a lot of things into their caregiving, they say that things have "taken a more natural shape".
"We make sure that she always has company because I think that's what she really wants," says Munah, adding that she has taken on the 'fun' role, while Ziyad is the 'practical' one, and their father is more of the 'spiritual' one.
And one thing that hasn't changed is Munah's close relationship with her mother.
"She still wants to be very much involved in my life, so I still talk to her about dating, that was the big thing I used to talk to her about."
Her mum's condition has even sparked some hilarious moments, Munah says, recalling one video call in particular.
"I'm talking to someone now, and I said to her, say 'hi'. And she was like, 'Eh it's a different one.'
"And I'm like, 'No, no, no it's the same one!'" Munah shares with a laugh.
For resources on dementia care, visit Dementia Singapore's website.