There are roughly 1 million carers in the UK looking after a loved one with dementia who are apparently putting their own health at risk according to research and charities.
(BBC Breakfast, 20th September 2018)
Over the past few years, there have been so many reports online, print and on-air about dementia. Initially I would just watch, empathise and relate to patients with dementia from seeing my paternal grandmother suffer with the illness. Back then, it was not necessarily first-hand-living-with-the-illness perspectives that I had. Appaye (or my paatti, grandmother) would arrive from Mauritius in the late 80’s to early 90’s (whilst I was in my very early and unripe teens). Funnily enough, I would be trusted with looking after her as I would be on my school break. But that was fun. I would play tricks with her mind, pretend to injure myself and just watch her grandmotherly love and affection smother me from her panic thinking I had really done myself some damage. My grandfather, who would also accompany her on her UK visits, would sit in the corner lifting his head up from his many Tamil prayer books and just laugh, silently, at my nonsense.
Into the mid 90’s, things would change, and when I visited her in Mauritius, she would frequently leave the house and walk to wherever her demented mind would take her. On occasion, by sheer luck, I would be in a cab asking them to pull over after spotting her in the middle of very fast moving traffic , so I could pick her up and safely take her home. The last time I saw her, back in 1996 she was bed bound, constantly screaming for members of the family who had died somewhat 50 years back. However, life simply carried on. My uncle and aunt, with whom she lived, were able to carry on and work without worry as being from a big family, everyone was around to take on a task (prepare breakfast, lunch, evening meals, bathe her, medicate her, wash her clothes). Her needs as a patient were being met, and life just continued. I mean, despite the obvious challenges, it seemed that no major lifestyle adjustments were needed.
From 2013, dementia became a condition which resonated closer to home. Lying in a hospital bed, after suffering a stroke, I went to visit my dad one evening. Visiting time was up, and my dad proceeded to get out of bed asking for his jacket
OK, we better go, it’s time to go home!
That moment sent a chill through my spine as it was a moment where my dad became his mother. I found myself trying to reason with him as me and many relatives once did with my grandmother. So that was it then. He doesn’t realise he’s in hospital for his own cause, and those faculties just might be starting to break down. This was the start of an ongoing traumatic journey.
We had just moved in with my dad around that time and, well, the start of this journey was ok-ish. Until he recovered from the stroke and dementia took over his personality as well as every breeze of atmosphere in the house. At that time I was still very much at work, but did not realise the impact it would have on my career and manager’s ability to understand the scale of impact. Work, dementia and child care requires a whole new blog. So my wife, Val, would be taking up most of the caring responsibilities.
Stroke recovery enabled Daddy D to pick up the phone, and, well, pretty much paint a picture of being a trapped and hungry victim. I could understand these mannerisms and shift in character because I was fairly familiar with dementia through my grandmother. However, overhearing a lot of the conversations my dad would have, and being on the frontline of the bullying was Val. At that time, with 2 young boys and pregnant with our third baby. Emotional. Hormonal. Me being a cradle snatcher, she was still only very young. However there was this cultural expectation for her to accept and get on with it because apparently, our karma is destined to be fruitful for looking after him until the very end.
Because of the said expectations, I stopped talking about our challenging situation with our circle of people because we were met with a seeming reluctance to understand. All that mattered was that Daddy D was being fed and clothed, so get on and stop moaning! To add, when you are alone (I use this term to include me, Val and the kids) all you want is for someone to listen, agree and suggest something that works in your (the carer’s) favour. But we are not all trained counsellors so who the hell intuitively knows what dementia carer’s needs are? Actually the final nail in the coffin was, when once pleading for help, I was advised to “use Val’s Carer’s Allowance and pay a private service to deliver his (dad’s) meals” (at that time he refused to eat anything Val prepared). So there was this general notion that we were milking the system and the system is more than happy with filling our milk jugs up to help with his care. Mmmmmm-Nah! In keeping schtum, I ended up cutting “us” away from “them” (family and social network). Simply because I had to consume too much energy trying to hold the home dynamics together whilst balancing my work-life. It also got rather frustrating that our lives were becoming open to scrutiny. Visitors would come home unannounced and scan personal letters, which seemed like we were “being watched” for hiding anything from my dad. Of course, he is my dad. His illness and associated arrangements is for me to deal with. Alone.
In 2014, once I finally got my dad referred, diagnosed and battled with getting Lasting Power of Attorney, reign in REDBRIDGE ADULT SOCIAL SERVICES! Who? When? Where? What do they do again? Good question. The steps were:
- They came
- Asked daddy dearest a few questions
- Asked me and Val further questions
- Handed over a Financial Assessment form and…
Until 2015 when they repeated the visit. Between that time, my dad fought with me, indirectly fought with Val, we were reported to Child Social Services for living with my dad with young children (which apparently posed a threat to their lives), Val was told to picture a “happy place” by a Redbridge Carer Support Therapist, I chased a runaway damsel in distress with three children in tow three times (her destination was probably that happy place), I hid knives and caustic soda to protect a damsel in distress from harming herself, we lost an unborn baby, I had very uncomfortable meetings with my manager for missing a meeting after working from home trying to manage the situation, my manager was making it awkward for me to ask to work from home more frequently. So, before another Social Worker from Redbridge Adult Social Services arrived, a minefield had developed. Towards the end of 2015 I saw the damage this was doing to Val mentally, the damage it was doing to me physically, emotionally and the traumatising impact on our eldest son, Micah. Time to move back to our home, and let Daddy D do it alone.
Us moving back home sent a ripple of panic through the Redbridge Adult Social Services office. I began to receive calls from them. Frequently. After informing them we no longer lived with Daddy D. Oh dear. What are they supposed to do? Start investing money? Surely not! There must be a way his devoted son and daughter-in-law can continue caring for him (by this time expecting baby number 4, or 5 if you count the one that got away!) But we carried out our duties nonetheless as professional services were unwilling to provide more hours to his care package and more days at the day centre (where he is everyone’s darling) without charging us (which they have been doing anyway recently). Plus the surrounding family network started to wade in delivering food parcels. But, without us there, and all the noise the children make, he remained lonely and unable to cope.
The Role Reversal
Fast forward to redundancy. We bought a new house and Daddy D moved in with us. I mentioned in my first two blogs that I saw redundancy as an opportunity to spend time with the children, allow Val to be released from dementia brain jail and for me to enter dementia brain jail. With the roles reversed, I became Val, Val became me. So routine thus began to set in:
- Wake kids up
- Prepare their breakfast
- Get them changed (Val takes care of this step now)
- Brush and plait my daughter’s hair
- Drop them off to school (Val now takes care of this too)
- Throw one load of laundry into the machine
- Prepare Bub’s breakfast
- Unload the dishwasher
- Start Reloading the dishwasher
- Prepare Pop’s breakfast (sometimes he can manage that himself, but I try saving myself from more mess to clean up)
- Dustpan and brush, dustpan and brush
- Clothes out to dry (sometimes I forget and they stay put in that machine overnight)
- Get Daddy D ready before his carer arrives
- He’s back by the time it’s lunch (prepare lunch)
- Finish cooking before 3pm
- Pick kids up from school
- Return to the house with all cupboards open and a few shattered glasses on the floor (an occurrence about 3 days a week)
- Listen, I’m sure you catch my drift…
I am chained to the kitchen. Daily. And when Daddy D is full belly satisfied, I’m picking up the general mess that is made between Pops and Bubs. Whereas when Val was immersed in the routine and she would vent, I would say “ignore it and just do what you can”. There is no such thing. I feel compelled to do everything that Daddy D demands. Or complains about. I. Have. Become. Dementia’s. Servant. God forbid me doing anything other than what he demands. Immediately. Or else the air of sweet scented flowers blooming would turn into the heaviness of elephant carcass. Through the stank mood. I used to take it with a pinch of salt when Val got upset over items seemingly belonging to her being thrown in her direction with the glare of “get your shit out of my sight”. That was until I started getting tablecloths and random laundry items thrown at me to get them washed “immediately” whilst I would be getting the kids ready for school. Boom.
All of a sudden dementia, to me, is not just a physiological and neurological change occurring in the brain. It is a mood cloud, hovering around above my dad’s head slowly consuming him, and churning out Daddy D. It disrupts mental harmony.
What I have written is a slither of that fat bitter gourd pie. What we have is:
- No designated social worker
- No designated memory consultant to really track his decline
- No one to step in and say “we are professionally trained at doing this, you are brimming, let’s take care of the situation”
Well, if your pockets are lined, then sure thang. If my dad’s pockets were lined, then most definitely (and they are not, must I add, because he always lived for the moment rather than the future. Putting other’s needs and entertainment before his home. Not a bad thing, it is just his nature). In fact I recently wrote a letter back in July after receiving a bill from Redbridge Community Care Services in the region of £850 for his visits to the Elderberries Day Centre twice a week and 6 hours Home Care he receives from Haven Care Services. No response.
With all this going on, somethings got to give, right? Well I touched on my career earlier, so from the way my managers back in 2013 – 2016 began to view me as the weakest link in the team, I knew my prospects within the company were completely tarnished (listen, any role I would go for would always be cock blocked by the person who managed me during that time right? We all know the incest media attracts!) So internally, pushing my own progression beyond personal challenges became challenging.
Doctors appointments and health also becomes very patchy to keep up with. Daddy D receives appointments. Sometimes I can make them, sometimes not. I attempt to make GP appointments for me and the kids. Sometimes I succeed, sometimes not, due to thinking I need to attend to other priorities.
The attention I am able to give my children is jeopardised. There is a calm when Daddy D is at the Day Centre. That’s when the weight, the heaviness, the gloominess of the atmosphere dementia excretes is removed for the day. That’s when I feel I can be a father, and cuddle up to my kids and listen to their every needs and attention they require. That’s when I can release the love and fatherly affection and just do for them. That’s when I can be a husband to Val and relax without feeling on edge about the guilt of kicking back with my wife. That’s when, that’s when, that’s when.
The charities are a funny one. I dunno. Maybe some have had fantastic experiences with them. I just find they exist as businesses, making promises to extend help, but in honesty have not got the capacity to. “So guys keep donating!” When my mum fell seriously ill with Multiple Sclerosis back in 2011 in Mauritius whilst on a break, there was a huge Indian soap opera on how to fly her back to the UK to continue her treatment. The MS Society were contacted. Nothing. I discontinued my contributions soon after. Oh and by the way, my manager back then was fantabulous in managing and supporting me through that event. Anchor in our Dementia Friends and Alzheimer’s Society. After joining their Facebook pages I was left jaw-dropped in shock, irked, horrified at the amount of relatives and carers (or relatives who are carers) who cutified and sweetified Dementia as an illness.
I love caring for my blah blah who has Dementia. They are so sweet and I wouldn’t change a thing about them!
Comments of this ilk are vast on both pages. When reading these comments, clearly I’m thinking I’m missing something. Or doing something wrong. Or just an ungrateful little bastard. Or these charities are fabricating these comments simply for me, the carer, to see everything through the patient’s eyes. Out comes the phone and I contact them in despair asking how they can help. They refer me to the Admiral Nurses who are suffering real cutbacks anyway and are limited in the care they can offer. In other words, Daddy D is independently walking and talking, doesn’t need help wiping his arse or pulling up his pants. That. Is. It. “So keep donating!”
In My Mind
The point of this blog is not to garner any sort empathy, but these are a collection of thoughts that have been reeled up on a little spool in my big brain over time. With this sort of journey, I noticed that as individuals in our household, a carapace (I love the culturalist Laura Mulvey for teaching me this word from my uni days) has formed. Emotion has been drained out of us. We do things and make decisions for our own want and satisfaction as opposed to thinking 10 times about it because of caring responsibilities. Tomorrow is not guaranteed. My want for a prolonged life is not certain. I may not enjoy 80 plus years of life Daddy D continues to enjoy. However I question whether the emotionless and concrete facet is healthy? Is there anything festering underneath that needs to be unleashed? Right now I don’t have the answers to this.
As a final thought and to round this blog up, I do want to say one thing. In all my frustration at having to go through this mental fatigue alone, I do occasionally get my broom out to fight through the Demented Atmosphere, just so I can latch onto my dad’s slowly disappearing personality, which is being eaten away by this shit, oh so shit illness. The best moments I have with my dad is when I am alone with him. That is when I can channel all attention towards him. It is when I can trigger his memory about a series of events from his youth, growing up, the women…ok I’ll stop there. It is when I see him smile fondly. It is when he sees me as his trusted confidante. It is when “carer” becomes son. When Dementia Cloud becomes my dad. It is after those moments when I walk away allowing emotion to flow, before I knead it back into my protruding gut, away from anyone’s sight.
Dad was always heart and soul of the party. I remember. Dad was always there to pick me up from my late night partying. I remember. Dad was always dragging me and mum without question to visit relatives and strengthen ties. I remember. Dad was once the family H-E-A-D.
Dementia can F.U.C.K O.F.F.
Written and composed by Krithi Rao, as a tribute to her grandmother, Meena Paatti in Chennai, who also suffers with dementia. The perfect backdrop to this blog right here.