Caring totally changes you. Everything I do is for other people

Saffiyah (54) cares for her elderly father who suffers from early Alzheimer’s and her younger sister who is registered blind. She used to share the caring with her Mum. Following her Mother’s death in the summer of 2020, all caring responsibility has fallen to her.

Saffiyah has her own health needs (she was treated for breast cancer in 2015), but, as with so many carers, they aren’t her first priority.

Gradually I started having more responsibilities

I couldn’t give myself all the time I needed to recover because other people need you. Gradually, I started having more responsibilities. I had to help my father manage the family affairs.

To start with, my mum and dad managed the house and did the cooking. I shopped for groceries and helped to look after my sister, took her out, gave her company. First it was just paying the bills then I started managing all our family affairs.

My mother had two heart surgeries in 2008 & 2013. I took on all the household work and looked after my sister. When my mum had recovered, she was able to give me some help again.

In 2017, my dad had surgery and his health deteriorated. As he was no longer able to drive, I became the family taxi driver. After he was diagnosed with dementia his health deteriorated further and he now suffers with double incontinence.

What are the biggest challenges of caring for your father and sister?

I am on call 24/7. I need to second guess all the time. Anything can happen at any minute. For example, one day I went grocery shopping. I returned home and found my dad lying on the floor.  He’d slipped and had been lying there for three hours.

I have to make many adjustments to my life, to my house. For example, because my sister is visually impaired, I must always keep the house clear. I can’t leave any obstacles lying about so my sister can navigate without being confused or hurting herself.

It affects everything. Even the dishes and cups we use have to take in other people’s needs. I’d like to have a glass dining table but it has to be opaque so my sister can see it.

Day to day

I’m always cleaning. I spend 11-12 hours a day on domestic chores. I have to clean the bathroom several times a day. I have 3 hours cleaning help a week, but that’s all. Occasionally I’ll get 3-4 extra hours if required for spring cleaning

I usually sleep between 3am and 11 am. The nighttime is my time to focus. I’m doing a digital marketing course. I do my assignments in the early hours.

My sister gets up before me at about 6am. I set out everything for her breakfast the night before however tired I am. All the items must be in exactly the right place on the table and in the fridge so she can find them without difficulty. I can’t leave knives in the sink nor extra dishes in the drip tray.

My father doesn’t [have a set] routine now, often he’ll wake up around 4 pm but sometimes around 7 am. He only wakes up when he feels up to it. I have more or less given up trying to get him to wake up, but my sister keeps trying.

Caring totally changes you

Physically caring is very demanding. I have my own aches and pains, but I have no choice. Lifting and moving dad is hard work, my hands hurt.

It’s not just my own health that suffers, everything suffers personal grooming, nails, hair, looking neat and trim. I have no time or energy for myself anymore, for making myself look nice. I can’t wear gloves to do the housework, so my nails are cracked and broken, and my hands are sore.

What do you miss the most?

I have no time to see friends. There’s no spontaneity in my life anymore. I can’t do anything without planning: meeting friends, being away from home for any length of time.

I have had to adjust my life around caring. I used to have full-time commitments, but [as my responsibilities grew] commuting became impossible. Often the bathroom wouldn’t be available so I couldn’t get ready on time to go out. Often now I’m too tired to eat.

Recently, I found a job that I was qualified to do, the right hours too, but then I realized I couldn’t go to the interview because there was no one to look after my dad and my sister.

I can’t leave my dad for more than a day and only if my brother will help out.

When was the last time you had a proper break?

Two years ago, before my mother died. I went away for a month to a friend’s wedding in Pakistan. It’s a lot of work to go away. I had shopped and prepared everything for my mother while I was gone. When I returned nothing had moved. It was so sad. My mother had been so busy caring she had been too tired to eat any of the nice things I’d left for her for when she took a break. Everything was unopened.

Now if I want to take my sister out it’s hard work because she needs a wheelchair, it’s hard finding toilets. If we went away together, it wouldn’t be a break for me.

Did you ever consider not taking on this role?

I had no choice. You love your family. You look after your parents. I couldn’t put my dad in a home. There are good days. You know you are doing it for your family.

The worst part is being taken for granted. I’m sacrificing my life. My sister appreciates me more, but I don’t have a life of my own. I lose my temper sometimes.

How has CSM helped you?

Carers Support Merton call regularly to find out whether I need any help with anything and guide me accordingly. [In the past I have attended] a health and fitness class for carers like me [but now it's hard to participate].

What will you be doing over the Christmas holidays?

It will be the same as any other day. All days, even holidays, are the same. Guests don’t come over anymore. We barely manage from day to day.

What are your hopes for the future?

To move to a new house, (I’d like to find somewhere on one level, on the ground floor, but I haven’t had the time to look.) To return to work, have time for myself. Now I do some online tutoring and am studying marketing online. I’m hoping to set up my own internet business. I can’t imagine life without the internet.

All I want for Christmas?

Time to myself. To fall asleep without any worries.