Mohammed and Alia in their kitchen | © N. Majali / HI
Alia takes care of her husband, Mohammed, who lives in a wheelchair. She tells us about her experience as a caregiver.
My husband, Mohammed Hassan, is 31 years old. He has lived in a wheelchair since he suffered a spinal cord injury during a bomb attack in Syria, We got married a few years ago. We have no children. We now live in Irbid in Jordan.
I play a pivotal role in helping Mohammed become more self-reliant, but I also have a disability. I’ve had cerebral palsy since I was 10 months’ old and I walk with a brace.
Mohammed did some physiotherapy in 2014, which helped him with his mobility skills, such as rolling over in bed, using a walker and dressing. But he can’t move around without his wheelchair.
I take care of all the different aspects of Mohammed's daily life. I help him to dress, bathe and use the toilet. With HI’s support, we made the bathroom more accessible so he could be more independent. But he is still anxious about falling and often calls out to me for reassurance when he's alone in the bathroom. Whenever I go anywhere, I always make sure Mohammed knows what I am doing so he doesn’t get anxious.
I’ve organised a corner of the kitchen where he can make coffee and tea and help with the cooking, especially preparing the vegetables. This has boosted his self-esteem..
Mohammed has taken on some specific tasks, such as getting food and going to the market for supplies, as he enjoys being outdoors. We’ve set up some WhatsApp groups to help us communicate and coordinate our daily activities. The groups include "House" for household matters, "Wallet" to monitor our finances, and a "Cooking" group to keep track of the meals we’ve had and help us plan what we are going to eat next. We communicate mainly through voice messages. We think this is a good way of avoiding arguments and managing our lives more efficiently.
My life as a caregiver was particularly challenging when we were first married because I was still learning how to navigate everything
Bedtime was set for 9 PM, but sometimes we would get unexpected visits or inquiries from the building security guard or neighbours. When that happened, it was difficult for me to put my brace back on in time to answer the door. To solve this problem, HI helped us put a time management system in place. Now, no one is allowed to ring the doorbell after 5 p.m. This arrangement has proved useful because our routine isn’t disrupted.
Helping Mohammed at night can be particularly challenging for me, as I first have to put my brace back on. Despite this, I'm determined to provide him with whatever help he needs.
My initial instinct was to help Mohammed without asking him, but HI advised me to always ask him whether he wanted my help, even for small things like putting his shirt on. This approach has made him more autonomous and taught me valuable patience and understanding.
Not everyone knows how to help Mohammed properly like I do. In fact, some well-intentioned people might inadvertently cause harm.
This is what motivated me to launch a personal initiative called “An Etiquette Guide for Interacting with People with Disabilities”. Now I give lectures to local societies to advocate for better treatment of people with disabilities and raise awareness of how to interact with them.
I also help Mohammed with exercises to prevent his muscles from stiffening and contracting. These exercises include leg stretches and applying hot towels.
One of the most demanding aspects of caring for Mohammed is dealing with his episodes of depression. This can be particularly tough, as he dwells on why he can't walk while others can. He’s nostalgic about his youth and sometimes he feels deeply emotionally exhausted. When he’s like this, I have to be there to support him emotionally and help lift him out of these episodes. It can be emotionally draining for me as well.”
Because he can’t read or write, I've signed Mohammed up for a literacy class to help him acquire these crucial skills. He has also expressed a strong interest in learning to use a computer, which is a great idea, so I‘ve also enrolled him in a class that will teach him computer skills.
Throughout our three years of marriage, we’ve faced a lot of challenges, including issues to do with married life and intimacy, which isn’t possible for Mohammed. These challenges have occasionally led us to seek counselling. Despite my tough exterior, I have my moments of vulnerability, and I often feel like a pillar supporting everyone around me. I've worked with people in even worse situations, but my commitment to my husband remains unwavering. I have a strong sense of purpose in life, even though I sometimes feel emotionally fragile on the inside. But I will persevere and put on a brave face when it’s needed.