18 June 2020

National Carers Week was last week but it is important that we think about the needs of carers and the responsibility they carry at all times.  
Here, we hear from Rachel V who lives in Tower Hamlets and has been a carer to her 90 year old mother who has dementia for six years.  This is a 24 hour role for Rachel but she has used her imagination and technology to keep her mother safe, especially at night, and tries to carve out time for her own needs.

Since my father died, my mother gradually deteriorated and signs became apparent when she failed to do simple tasks, trying to piece a sentence together, forgetting the names of her children/grandchildren, she was also unable to read/write, take her own medication, dress, bath, prepare food and even make a cup of tea.

Let me talk about myself as a Carer. I am now 70 years old and a Pensioner and have my own medical issues. I have always lived with my mother, and taken on the job of helping my mother in the running of the household, such as general cleaning, doing the laundry, cooking, necessary paperwork,  etc. This was a gradual process, well before my mother was diagnosed with Dementia.

Since then, I have taken on other tasks such as washing, dressing and bathing her, cooking, food shopping, taking her to the Dentist and Doctor, as well as taking her to hospital appointments.

As she has osteoporosis and has had two knee operations in the past, she has the use of a wheelchair or a Zimmer frame, and the choice of equipment depends entirely on how she feels on the day. She is incontinent too, and for hygiene reasons I change her underwear as much as six to eight times a day, and at night time it's even worse.

It has now become a full time job, and a difficult one as she is also hard of hearing, as well having a language barrier which makes it more difficult for people to communicate with her. I have found the best way to communicate with my mother is to use facial expressions and hand signals.

As my mother uses a commode at night, she has fallen a couple of times and for some reason she does not call me. So I have bought and placed an audio/video baby monitor in her bedroom, in order for me to watch her from a different room. I have also bought a 'touch lamp' and placed it on a side table near her bed - which she uses. Additionally, I bought some sensor lights and have placed these in the hallway, so that when she exits her bedroom, it alerts me to attend to her.

What is the hardest thing about being a carer?
Staying alert and lack of sleep as my mother can be unpredictable, getting out of bed early hours of the morning and waking me up.
The other matter is when she has had her meal, often 30 minutes later, she will claim she is hungry and so I get her more food but she does not eat it. I have worked out that, her brain tells her she is 'hungry', and at the same time when it comes to eating her food her stomach 'is full.' She also tends to misplace things such as her glasses amongst other things.

What is the best thing about being a carer?
Satisfaction, especially when my mother thanks me for taking care of her. This way I know she is contended and happy.

Can you say three words that sum up what being a carer is like?
Stressful, unpredictable, and communication.

How do you make sure that your needs get met and that you do the things you need to do?
Routine, and I try and keep to a timetable and give myself time to do whatever needs to be done outside my mothers' needs.

How do you cope when things are difficult?
I try and stick to a routine and accept it as a daily chore, as well as my duty as a daughter to look after my mother - no matter what!

How has it been since the coronavirus pandemic began, and shielding and social distancing was introduced?
My mother and I are shielding anyway, as we fit the critetia set by the Government - as informed by our GP.
So in a way, there is no change as such, but to keep washing her hands more than usual.

What is your top tip to other carers?
Think laterally, be mindful and communicate, and place things to avoid/prevent accidents such as falls. See above on 'communication', and 'items' placed such as audio/video baby monitor, touch lamp, sensor lights.
Carers must also find time for themselves, in order to keep their sanity.

Anything else you would like to add?
I act as my mother's Power of Attorney, which makes life a lot easier when dealing with authorities/officials, etc.
It is so important to do this, as it could become costly and time consuming.
It is also important to communicate and make carers aware of the Carers Centre (Brayford Square), as I found them very very useful, as well as the Alzheimer's Society.

Rachel was in conversation with Janet Flaherty, Head of Communication
Thank you to Rachel and all the carers who have kindly shared their story.

Tower Hamlets Carers Centre >>
Alzheimer's Society Tower Hamlets >>
Age UK Tower Hamlets >>