THE ACCIDENTAL CARERS💕

⚠️Warning: I may get emotional but will cover it up with my silliness. I want to tell you about my parents and also just catalogue the events of the last eighteen months briefly. I’ve been warned about length of my blogs .. I write as I talk..too much. Papa and Mummy are in India (you’ll recall that 4 day trip to India 😂). I may just be missing them a little 😟.

So it took my mum nearly dying for us to show each other how much we love each other.We had never been a huggy family and love was demonstrated through actions and food and rarely through words. This has followed me through life too… feeding people anytime anyplace.Known as a Feeder. I will do anything to help if I can and that’s always been a constant but I may not tell you that I love you.

So , just before Easter 2017 mum (Shashi Bala Sharma – born 1946)had a fall. My dad (Rameshwar Prasad Sharma- born 1936) was unable to lift her. I mention their birth years to highlight their 10 year age gap. If you have ever seen them you’ll understand why papa couldn’t lift mum.So he summoned the ambulance and off she went to Ealing Hospital. Just to give you a little more context here – mum has had three minor strokes and a double heart bypass. Yours truly was holidaying in Oman at the time – that’s what Easter had become for us.Papa in his normal way didn’t actually tell me – he didn’t want to spoil our holiday. And then when we did find out he convinced me that she was in the best place or so we thought.

Note to self:don’t end up in hospital over holiday season. Mum was left to deteriorate and finally after Easter a scan showed that she had a gallbladder infection – sepsis (which had caused the initial fall). We walked into a ‘Casualty’ style scene as they were rushing to drain the infection. This led to her being admitted to ICU where she remained for 67 days. Each day bought its own level of hell. For papa , me and other family members. I came to know some amazing nurses and consultants and some who should frankly rethink career choice. 🙄. Each week bought an added complication and my memory of that period is

⁃ Being obsessed (but not as much as papa) by all the monitors and data and commenting as if we knew what it meant. A little like me being an expert at all sports during the olympics 👊🏾

⁃ playing religious songs on my phone: all help is needed in such situations

⁃ doing shifts with papa.

⁃ moisturising mum’s feet

⁃ combing her hair

⁃ forever washing my hands

⁃ being amazed at the 24/7 care by nurses who were in the same room as mum.

⁃ her being fed through a drip – man that can’t have been tasty? Sure she would have had something to say about that.

⁃ All those parking payments 🤦🏽‍♀️! Which could have been avoided by getting a permit. Well kept secret !!

⁃ being happy when she moved her fingers finally

⁃ hearing her make a sound when they did the tracheotomy

⁃ bemused at the thought of a physio spending time with mum.

⁃ Being taken to a room with Aarti and being told to prepare for the worst.

⁃ spending more time with my dad than ever before

⁃ astounded by my dad’s strength and energy and commitment to mum

⁃ being reprimanded for crying by my dad. So never did it again in his presence.

⁃ Repeating repeating repeating the whole thing to every new doctor/nurse that entered our story

⁃ our kind generous neighbours in Southall feeding us for 6 months. How was that even possible?

⁃ The most wonderful consultants who did not give up on her.

⁃ The number of personnel it takes to run a ward

⁃ The amount that is outsourced by the NHS

I can’t really talk about the next few weeks . But in summary she was finally discharged to the wards. If I talk about it I will be negative and I don’t want to be that person. We thought she was suffering from delirium and that was a source of huge entertainment (not at the time). She thought at one point she was a prisoner. Another day she was so cross with me because she wanted new shoes and why wasn’t I getting them. The shop is just there!! Calling out to strangers, shouting, being rude and it goes on. I had gone past the stage of being embarrassed unlike my father. And the consultant who was honest and set us up for this being the new world. We celebrated her 71st birthday on the wards and she insisted every nurse had cake – the feeder never goes away!💕And for once we got a chance to feed her during those days. Another note to self – don’t end up in hospital unless you have loved ones to feed you and have your back. So quick to take your bed.😟

We managed to get her to a rehabilitation (I covered days in a few words here) unit in Southall (room numbers 8 & 10). God love the team here. They taught mum to take steps again with a frame. Not an easy task when you are difficult and un cooperative – simply because she didn’t actually know they were trying to help. They even had Indian food for her. But she didn’t like these people that she was visiting, “they’re not friendly”. And then she was going to report me and my dad to the police for keeping her prisoner. They finally chucked her out after another little hospital visit in between. A&E visits during early hours of the morning – not an experience I wish to repeat.

The days at the rehab unit became the new normal and visits could be happy or challenging . It was just pot luck. Some thought I was hairdresser as it was my go to task for mum. She loved her feet being massaged too. Not your normal spa break sort of place though. The carers are a different breed aren’t they; ooze patience and love and take people who are not their parents/children to the loo! I know that may seem petty but let me tell you it’s a big deal for all concerned.

Leela (Hungarian carer who actually left because of Brexit – sorry I’ve managed to avoid the B word till now)and mum became friends. She genuinely loved mum and could calm her down and knew what she meant even when I didn’t get it. I watched others being visited and each family having their little routines. But I also was saddened by some who had no visitors ; thank goodness most of them didn’t realise. My abiding memory is of Mary, who sat near the TV in the common room with a red ball of wool. She would knit and knit 🧶 and then at some point undo it all and then start again. She reminded me of Penelope ( wife of Odysseus) in Homer’s Odyssey. I digress. Let’s just summarise those days as another challenge but we saw them as being a step closer to mum coming home. Mum would always sit facing the entrance and would announce us to all as she saw us approaching. She would be irritated by me continually trying to test her – what’s the time mum, how many children does X have, what did you have for lunch, shall we play cards, let’s do some maths…. It took me a long time to accept that she was never coming back. But I recall on 15th August (India Independence Day) as we watched BBC news she reeled off dates and names!! 🤷🏽‍♀️

She finally came home Diwali 2017 and I think that has to be another story. It is largely my father’s story of becoming a carer and the trials of finding support. I stayed in Southall for part of the week. In early January we got the diagnosis of early dementia for mum. This was no surprise to us and I truly believe that she had been on the path for a long time – long before the hospital drama. In March we took her to India and they stayed there till mid June. It was post this that we even considered care homes which only bought tears and we came to the conclusion that she was not ready and neither were we. It would be consigning her to the last chance saloon and we had other plans.

We got through the glorious summer with support. Papa went back to do his early morning power walks and yoga. I continued to spend some of the week in Southall. Simon and I spent most Sundays there and became expert wheelchair pushers. I mastered the art of manoeuvring in disabled loos – I want a badge please! I also accepted my new mum.

My mother was and still can be the life and soul and commands centre stage not just because of her physical presence. She is simply loud and full of fun and a little cheeky sometimes. In my younger years I used to find this embarrassing but now I see those traits in me (sorry Art) and my daughter (sorry Simon). God help our friends and family.

She was an incredible cook and would be like a magician in the kitchen rustling up large amounts of yummy food at any time for random visitors from next to nothing . I on the other hand open a tub of olives,delve into the freezer for M&S snacks or run to Bala (those who know just know).Over recent years due to mobility issues , lack of taste buds and early dementia mum has not been able to cook.But I’ve seen her and experienced her giving instructions as she sits and watches food being prepared. And still being brutally honest if she doesn’t like something.

My father is an ex Indian Airforce man- formal and regimental in his routines. Never late , always early. Mr Planning and prep . Living within your means. Why do it later when you can do it now? We had many years apart because of his job so I never experienced his humour and gentleness much. The last 18months have shown me what a great man he is. Proud, respectful and generous to those he loves. It took him many years to accept Simon (not only is he my second husband but also English). To be clear that was probably more to do with me than Simon. What wasted years – they now drink beer together !!

Am sure this is long enough for now. I could probably bore the pants off anyone who would care to listen about each hospital or care-home visit. But to close this off I wanted to share the following. I wrote it in the middle of a difficult night earlier this year and put it on FB- which had become my outlet.

That dirty word dementia…

Behind closed doors mum is not there…appears fleetingly only to vanish in an instant. Raised voices , gentle strokes, pleading again and then anything that comes.

Sucking all life out of those around her without meaning to. Leaving us in tears and confused as she is as to how to live life guilt free. How to find the strength , both mental and physical to help her and ourselves.

No one warned us… especially you mum that this would happen. You’re supposed to be there for us always. You’re supposed to have all the answers.

I’m praying that there will be some salvation for us all. Just need to find that strength to carry you all into the light.

It’s already tomorrow but my eyes are still open.

————///————-

I have discovered I have the capacity to cope. I have discovered I have a truly wonderful network that just keeps giving. I have also discovered (I always knew I had a charmed life and thought I did not take people for granted) that life keeps going and it’s up to us to enjoy that journey and help others along the way. It gives our life purpose.

So Papa is in-charge of Mum for a while with help from extended family members all the way in India. This affords me the time to be self indulgent (all those parties 🎉)and write these blogs whilst I wait to go out there next year. I have finally been able to give her an answer when she says, “when are you coming Guddi?”

🙏🏽

Seema