Carers Week 2021 took place on 7-13 June. During the week our parents & carers network NEST hosted two lunch and learn workshops led by Lena Chauhan from Rise IQ on understanding dementia and how you can support loved ones through this. Links to the recordings can be found at the bottom of this article, along with resources provided by Lena.
To continue the conversation about supporting those with dementia, Seema Chauhan shares her story.
I’d like to extend a warm ‘Hi-Hello to all KCL colleagues. I hope you and your family are keeping well in these unprecedented times.
My name is Seema and I work in Procurement Strategy & Services, within the Science & Research division. I am a carer for my mother-in-law and would like share my experiences to extend any knowledge, even if I can provide a small insight or any information to anyone beginning a similar journey past or present. It can be a rewarding and emotionally challenging roller coaster for sure!
It’s finally the weekend! Who doesn’t love a Sunday lie in!
I stretch, open my eyes, press snooze once again and say to my husband “it’s not even 7 o’clock, just a while longer, then I’ll get up”.
No sooner had I uttered those words, there is heavy thumping on the door.
“Seema, Seema where is it! Tell your wife to give me back my rings! I saw you take it and throw it out of the window! It was my mother’s ring..give it back, I saw you, you senseless girl, give it back!”
Hearing the increasing anger in her voice and now knowing from experience what may be to come, I throw the covers over my head, nudge my husband and declare “I think I’m going to have a duvet day!”
Mum prior to dementia
An energetic, very social and hospitable person (she still is, bless her! if you think you’re visiting and leaving without a full belly and a cup of lovely Indian masala chai, you are grossly mistaken!) She loved arts, netball, was an amazing seamstress, highly educated and is still a natural beauty at 78.
She is vegetarian but could make non-veg dishes better than any other restaurant for sure! Now I understand why hubby is armed with a spoon before I’ve even finished making dinner. He is the taste tester and has a better palate than me for sure.
Sadly, by mum’s early thirties, she had lost two children and also her husband and was left to bring up three young children single handed.
Dementia diagnosis and progression
Mum had driven to visit family and got lost on her way home. She stopped at a garage and asked for help. This worry stayed in her mind and she booked an appointment at the GP’s. After referrals and assessments at the memory clinic, she was given a formal diagnosis of Alzeihmers disease and Vascular dementia.
For her own and other road users safety, we sold the car. Out of sight out of mind, but not out of memory of course. She was deeply hurt as it was a large element of her independence. It marked the start of a constantly evolving journey for us all.
Since then there have been many changes over the years. She is very repetitive, no longer cooks, is always recollecting past memories and safety is a now our new concern. Our beautiful mum is slowly disappearing in front of our eyes.
Working from home proved to be good company for mum, reducing our 10 times a day calls to being on ‘call’ and being better able to respond in person. In reality, despite my being with her more she has deteriorated a substantial amount.
Delusions are now part of life and I have transitioned from being her third daughter to being the ‘thief’. Bangles, rings, earrings, clothing. She constantly hides things and can spend hours wandering and searching. As a result, she can become quickly angry and frustrated demanding that we explain what she has done wrong for God to have given her dementia. Sometimes we can distract and divert her focus. Hold and stroke her hand and give reassurance with a smile. Other times its best to leave her to express her anger and move away for a while.
Then there are happier days we treasure when she is laughing, talking to the flowers in the garden as she’s watering and dancing around to music. Games are really good to stimulant to occupy and help mum feel empowered. We have a box filled with wooden puzzles, colouring books, waterpaints, bright personalised match cards, Jenga, and a brilliant conversation game named call-to-mind. She even has her own I-Pad, though she sweetly she calls it her ‘facetime book’.
Working full time, caring and being at home has been different for sure. There are times when my husband and I are in a meeting and mum will walk in and start talking. One of us will say “mum, I’m in a meeting, I’ll come in a minute”. Two minutes later she has re-emerged, is now standing behind me in my zoom meeting. I only realise when colleagues in the meeting look over to the edge of my screen and then she continues talking.
I have written names of contents in English and Gujarati on all containers, from the kitchen to her bedroom cupboards. Perhaps trying different colours may be another consideration, or possibly photos of contents as she progresses?
There is so much to consider now and in the future. Attendance Allowance, Lasting Power of Attorney, Blue badge, Admiral nurses and Age UK to name a few. As a caregiver, it has been emotionally challenging, and I manage my own well being by accessing carer support groups and listening to talks on YouTube. Sometimes I’d like to just leave the house on a whim and visit friends/ family. It’s not always possible to and we need to forward plan to make sure she is not left alone.
It’s important to always remember the person with dementia just has a condition, caused by the abnormal build-up of proteins in and around their brain cells. We can only manoeuvre around her triggers and behaviour changes, recognising that memory processing is much slower and sadly sometimes just not there.
There are highs and lows, laughter and tears for all persons involved in the journey. It is a constant learning curve and it’s about stepping into her reality rather than being in your own. The ‘real’ mum that I remember first meeting is still there, now she is an adjusted version of her previous self because of this cruel condition.
The Bookcase Analogy
A useful insight to to the dementia brain (similar to the album analogy)
Imagine your brain is a bookcase. your earliest memories are at the bottom, while your most recent memories are at the top. Your bookcase contains all of the facts you know, the memories you have and skills you’ve acquired throughout your life.
Now imagine dementia is like a storm that hits the bookshelf and rocks it back and forth.
When the bookcase rocks, the top moves more than the bottom, so the newest memories call off first, while childhood memories which are on the bottom of the bookcase are most likely to stay intact.
when the storm ends, the person may try to put the books on the shelves but the books on the top shelves are particularly hard to reach and some of those memories may never be replaced.
additionally, the memories of things that have happened are rocked off the bookshelf very readily. However, memories of the way these events made the person feel are not so easily moved. this is why feelings and sensations (taste, smell, sound/music) are an important way of bringing back memories for a person living with dementia.
Resources & Recordings;