They only care if you do it for free!


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They only feel sorry for those who do it for free! But how about those who chose to do it regardless of how hard it is?

When I first started my job as a carer for a patient with dementia I began writing this blog and I would feel embarrassed about the comments and messaged I would get praising my work. I would think: “Don’t be silly.

It was not until I attended a public fair for carers in the local shopping center that I realised how undervalued paid carers were. I came across several stands for large organizations such as the Alzheimer’s Society to very small ones that I can’t even remember the name of, and not one seemed to have anything available for paid carers. Walking past a stand with 2 or 3 empty massage chairs where carers were invited to get free massages I was told it was only for unpaid carers, like family and friends.  I didn’t particularly want a massage, but that rejection stayed with me and made me think.

Yes, unpaid carers for people with dementia such as friends and family deserve a medal. If you have never taken care of a person with dementia imagine how challenging it might be and multiply it by 5 – that’s a rough estimation.  And people who make the decision to give up on a normal life to dedicate themselves to the care of a parent, grandparent, uncle, aunt, an in-law etc take on an immeasurable amount of responsibility and go through an unimaginable level of stress. And the reality is that: this decision to care for a loved one is most of the time not a decision at all. Sending a loved one to a care home is a difficult decision to make both financially and emotionally, and since dementia is progressive by the time a person is diagnosed care in the home is often more suitable until a time comes when it is on the patient’s best interests to finding him or her a suitable nursing home.  So choosing to care for a loved one is usually not a choice, but an obligation. But nevertheless these people are giving up important parts of their lives to take care of someone who needs them – and they get nothing in return.

Fairs like the one I came across, which offer advice, freebies to aid relaxation and support to these unpaid carers, are, with no doubt, doing a wonderful job. But think with me: Don’t paid carers deserve a bit of respect and recognition too? I can’t speak for them all. I know that most work for agencies and get, or are supposed to get a lot of support from their supervisors. Like me they work long hours but they tend to work a few weeks on and a few off. But there are people out there who like me work very long hours every day, 5 to 6 times a week all year round, for not that much more than minimum wage and agree to live in their patient’s residence. That is no life people just willy-nilly choose to lead only for the money-to choose and succeed in it a genuine desire to care must be there somewhere.

Six months ago I shared a room with my boyfriend in a vibrant house full of students while I went to University where my mind, social and personal life were constantly being enriched and stimulated. Now I work on the basis listed above and to top it all off I feel that I am turning into my patient. I hardly exercise due to having to keep up with her lifestyle, I have gradually begun to eat less and less and lately she has even eaten more than me which is worrying-I need to watch my diet! My boyfriend laughs, but I’m not laughing at the fact that I’m becoming an old lady.

In a ‘normal job’, let’s say an office type job on a 9 to 5 basis everybody has as off day every now and again where they might just want to slack off a bit and be nice to no-one. But I can’t possibly allow a day where I might feel a little home sick, depressed or tired get in the way of my client’s personal hygiene. I can’t possibly let her notice my bad mood lest it (and trust me, it does!) rub off on her and suddenly she is also in a bad mood and depressed. I need to put on a smile and be lovely to the lady that might just spend that day being nasty and difficult to me for reasons out of her (and sometimes my) control.

So if you know someone who earns a living as a care worker, please give them as much respect as you would give a family member who has had to give up a lot to look after their loved one with dementia. Right now we could be working menial jobs in an office or supermarket checkout where if we wanted to we could do the very least that’s expected to earn us a living but instead we are working for no extraordinary pay, doing things most people would not do for double the pay and going way out of our way to make sure we are doing the job properly because someone’s life and well being depends on it.

Without us I believe those family members would eventually crack and many dementia patients could be admitted to nursing homes before their time. And I also believe that in a time of so many scandals about poor and shameful care in nursing homes we should be encouraging good paid care workers to go on doing what they do by praising them, offering them a free massage every now and again and thanking them for choosing to do what they do.

There are only so many family members and friends in one family, and only so much each one can deal with. Eventually many dementia patients will be cared or by us. And you don’t want us to go into it feeling undervalued do you?

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Wanted: ‘No tears’ toothpaste


By Anna Nogueira Nicolau

Out of the most humiliating things you can tell a grown woman she should or needs to do, to brush her teeth has to be at the top of the list. It clearly implies two things:

1. Your breath stinks; you have got no sense of hygiene: i.e. you are dirty.

2. You should be treated like a child.

To validate my 2nd point I’d like you to think back to the last time you were asked or told to brush your teeth. If you belong to the general adult population this will probably bring you back to your childhood, but if you are a person who is utterly ignorant of their terrible breath and lacks minimum personal hygiene then you validate my 1st point and will have some fairly recent memories of the last time you were told to, asked to or hinted you should brush your teeth.

My point being: It must be humiliating to be told you should go brush your teeth.

If you’re a lady with dementia it is humiliating and invasive, but if you are a lady with dementia who is not aware of her condition and the need to be reminded to do things it is even more degrading.

Thinking in those terms makes it easier to understand why Dorothy makes such a fuss when I try to get her to brush her teeth. But understanding why sometimes she point blank refuses, argues with me, and simply goes a little crazy when I try to get her into the bathroom for a date with her lonely toothbrush does not take away from the frustration of it all.

I must admit, I’ve been on the job a few months now and have not gone through great lengths to ensure Dorothy brushes her teeth every day. I’d say 1/3 of the time she remembers and does it herself, 1/4 of the time I throw a hint and she does it, 1/4 of the time I hint/attempt to persuade/order her to do it and she does, and whatever other fraction amount left (I wouldn’t say Maths is my strong point) I turn a blind eye to it and she goes without brushing her teeth.

But I had to question the morality of it all. I’m her carer, this is my job, it is simply unacceptable that under my care Dorothy goes even one day without brushing her teeth. But is it acceptable that I should put Dorothy under the level of stress that trying to convince her or make her to brush her teeth everyday puts her under? Is Dorothy brushing her teeth absolutely everyday worth the

  • Raised blood pressure?
  • The very sudden, unexpected and acute outbursts of anger?
  • The stress?
  • The feelings of humiliation of being treated like a child?

If Dorothy knew she is a forgetful old lady whose carer is there to make sure she brushes her teeth everyday she might be more sympathetic to my requests, but unfortunately she is oblivious to what she has, what I do and who I am.

If only there was a way to ensure she brushes her teeth without major arguments. If only there was a toothpaste like the ‘no tears’ promises of children’s shampoos.

  • Explaining all the reasons Dorothy should brush her teeth does not work.

Using reasons such as “It’s dentists orders”, “you might get gum disease again”, “You haven’t done it today”, “I’m just reminding you” only result in angry responses such as:

What do you care?

So what?

Tell the dentist she can come and talk to me directly!

  • Trying to trick her into doing it doesn’t work either:

‘Lies’ such as: “You should clean your teeth now before I go in to clean the bathroom” get responses like:

It’s OK you go. I’ll use the sink downstairs.

  • Hinting things like: “I got some new toothpaste if you wanna use it to brush your teeth now” also doesn’t work as Dorothy just says:

I know where everything is, I’ll use it when I want to.

So…I need a reason, easy to understand, compelling enough, which has nothing to do with her being forgetful, from an irrefutable, authority figure she respects and listens to. It also needs to be tangible so it’s not just my word.

FAKE DENTIST LETTER IT IS!

And after finding out that such letters telling off non-compliance patients actually exist this won’t be a complete fabrication! And it’s for a good reason.

So watch this space and wish me good luck!

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The wrinkly young lady


By Anna Nogueira Nicolau

Incidents of Dorothy seeming to be stuck in the past were not rare. And when I say ‘past’ I don’t mean last week – I mean several years, decades ago. Come on, her seat in the living room seemed to be strategically placed to check out the men walking past the house, and the way she can laugh and feel pity for the way old people look silly struggling with shopping bags could not be coming from a lady who understood that she is also ‘that’ old.

I do have a boyfriend and I can’t just keep looking at young men in the streets, but if I’m supposed to take part in meaningful and fun activities with Dorothy as part of my job and she wants to look at men in the street then ‘oh no’  I guess I MUST join in…If she wants to start checking out young men walking home from work in front of us, looking all smart in their suits, to realise, after close inspection that one of them is wearing girly socks and has a bum that is actually too big for a man then I guess I just have to join in!

The problem with Dorothy’s behaviour when it comes to checking men out in the streets is not what she is doing. She’s not actually doing it that often, it is just a bit of fun. But it makes me wonder if this is Dorothy being playful as she would be in her 70s with or without dementia, or if this is a Dorothy with dementia thinking that she is much younger than she is, or maybe it is even a Dorothy with dementia who is losing a bit of inhibition which is symptomatic of dementia. It is hard for me to know, having only known her for a couple of months. But since this behaviour does no-one any harm and fills some mundane days with a bit of fun and giggles I don’t ponder on it too much.
But when Dorothy told me she was not going to get a bath after I had just ‘nailed’ the perfect technique for her to get a bath without any problems I felt like we had gone back to the start. I had spent days trying different techniques to get Dorothy to get a bath without me having to try to convince her that she should, that she needs to, without her feeling patronized or forced to. I had finally gotten her to enjoy and accept her morning baths and one day she just says: “no”. Instantly I began trying to convince her, to guilt trip her by saying I had already gone through all the trouble of running the bath. But then I stopped and simply asked:

Anna: Why not?

Dorothy: Well, because of my skin. Just looks at it.

Dorothy had a hold of her skin in her arm and was playing with it, looking at it with disgust. It was not new to me that if you pulled the skin of an old lady it did not instantly go back. She was a lady in her seventies, and a very skinny one: her skin was terribly wrinkly.

Dorothy: It seems like I have some sort of skin condition. It is so dry and wrinkly! And all out of nowhere. I really should see a doctor about it.

I suddenly realised that Dorothy being stuck in the past wasn’t always going to be funny, or nothing to worry about. It would get to a stage when she would actually look at her body, with the mind of a 30 year old woman and think:

WHAT THE HECK HAS HAPPENED TO MY BODY?

How scary must that be??

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The Kind Sister


By Anna Nogueira Nicolau

My struggles getting Dorothy to get in the bath and get changed, put on her make-up and look presentable for the day were just beginning. Although after the ‘tights’ incident’ she seemed to almost instantly forget what had happened, that still didn’t take anything away from the despair of the moment.
I would have to approach the whole thing as a process; a list of things to be done in a certain order, and ticked off respectively. So first: getting in the bath. I had to convince her to get in the bath. It was a nightmare.

Anna: Dorothy, do you want me to run you a bath?

Dorothy: No.

Anna: Are you sure? I could do it now.

Dorothy: No. I do not want a bath. Thank you.

Anna: Uh… I don’t think the water will stay hot for long today so I think it might be better for you to have a bath now.

Dorothy: I already had a bath today, this morning in fact.

Oh no, she hadn’t. But was I going to say to that? “No you didn’t you silly little liar”? Of course not! She was probably not lying, but instead confusing yesterday’s bath with a bath that she had in the morning. Either that was happening, or she really was lying, tricking me. But I couldn’t tell which one she was doing, or tell her she was wrong. That would just upset her and lead to an argument. If she happened to be tricking me aybe I could trick her:

Anna: Dorothy (sweet tone and voice applied)

Dorothy: Yes?

Anna: That bath you wanted is ready.

Dorothy instantly gets up: Oh! It was about time! I’ve been waiting for ages!

I couldn’t believe my luck! That was going in my notebook of tricks. Hurdle number 1 had been lifted off the dusty ground and jumped over by an inch! Now I needed to make sure she could get in the bath herself without getting hurt, struggling too much or falling. Before me her carer seemed to do most of the bathing, but I wanted to try things differently. I wanted to try to instil some independence back into her life. She was still in the early stages of dementia, and if she was slowly crawling towards a day when she might need to be looked after like a baby I thought it might be nice to allow her to do as much as she could by herself. But if I just turned my back and let her get in the bath by herself without assessing her capability first we might end up with Dorothy in a cast for several weeks, definitely having to be looked after like a baby.

So, I struggled having her accept my help getting into the bath, seeing her naked. So I would keep talking about silly things, the colour of the tiles, how I needed to clean the bathroom, the nice smell of the bubbles, and ‘boom!’ I would quickly say: “oh yes, by the way if you don’t mind I’d like to take your nightdress to wash” and in a bit of a daze after all my talking she would take it off and give it to me. Then I’d keep talking and talking and subtly mention how slippery the bath was with all the NICE bubbles I put in for her…she better hold my hand to get in the bath. The positive feelings about the nice bubbles that I filled the bath with made her forget how she hated accepting the helping hand.

So there. She was in the bath. I found a bath pillow hidden on the side, which seemed to not have been used in a while and stuck it on the bath for her. It was like heaven. I never heard complaints about short, cold baths again. Now everyday she had very warm, extremely bubbly, pillow-accompanied baths. She was truly happy about taking baths now. I was so proud of myself I thought I would fish for some compliments about my ingenious idea about the bath pillow.

Anna: Oh, it must be sooo nice to have this nice pillow to rest your neck now so you can stay in the bath for longer and really enjoy it, isn’t it Dorothy?

Dorothy lifts her head, looks at me slightly puzzled, seems to get a moment of realization about what I’m talking about, gladly rests her head back down on the pillow and says:

“Oh yes. Your sister did that for me. She is very good. She’s been doing all these nice things for me. She did my hair the other day too. If you see her, tell her I love this pillow.”

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The 50ish lady with tights on


By Anna Nogueira Nicolau

So after so much pondering there was no question about it. I signed on to becoming a dementia carer for at least a year. Now the question wasn’t of whether I would stay on the job, but it was of how I would survive it.

Me and Dorothy just kept clashing! How I would get her to do what I wanted was just an enigma to me. She did not seem to know she had dementia, that she was in need of any help or guidance and that I was her carer, so how was I even going to phrase or act out a request for her to take a bath without sounding incredibly and unbelievably rude?!

Trying to encourage her to get ready in the mornings was just failing miserably! She would either put on ridiculous clothes, or just not want to put on enough clothes.

One of my first attempts to re-dress Dorothy after a miserable attempt by herself ended up in disaster. Sat in my bedroom, working out that week’s expenses I see Dorothy, looking content and ready to go about her day. ‘Brilliant!’ – was it not for the fact that all she had on was her underwear, a top and some tights. So I stopped what I was doing and approached her:

Me: Hi Dorothy.

Dorothy: Oh hi.

Me: Are you still getting changed?

Dorothy: No, I’m ready.

Me: Hmm… (how do I delicately tell her: ‘Eh…I don’t think so!’ ?) Aren’t you going to wear something over your tights?

Dorothy: (looks down at herself) Nah. I’m fine. Why would I?

Me: Well, because you’re only wearing tights.

Dorothy: I am not.

Me: Pardon? I mean, what’s this you’re wearing on your legs?

Dorothy? (looks at me and laughs like I am just stupid) Well, my tights of course!

Me: Yes, that’s what I’m trying to say. You don’t mean to go out only wearing tights do you? I think you have a nice skirt here that will go with it (I make my way into her bedroom, towards her wardrobe.)

Dorothy: Excuse me! I already have my tights on, I don’t need anymore tights. No, no, no, that skirt is too big. This is what I’m wearing!

About twenty torturous minutes later, things that her niece Rebecca had told me kept going round and round in my head. She had told me how important it was that Dorothy always looked respectable, so people could not single her out in the streets and so she would not catch  a reflection of herself in the street in a lucid moment and be shocked at the sight of herself. Well she was an elderly lady walking around in nothing on her legs by very see-through tights – she looked both silly and indecent, and she had plans to go out. If I were to go out with her like that she would look like an utter basket case and I would look like the most negligent carer in the world!

I began to panic. No matter how much I tried to reason with her she did not make any sense out of what I was saying. Finally she snapped:

Dorothy: Go away now! I am going to finish getting ready and I do not want you in here anymore! (she walks towards her shoes)

Me: No, don’t put your shoes on Dorothy, I’m very sorry but you just need to take those tights off and put one of your leggings on instead.

Dorothy violently took her shoes and in a very ridiculous manner, with her elderly shaky hands tried her hardest to put them on as quickly as possible before I could stop her. It reminded me of the cheekiest cat I had ever had who once he was spotted doing something wrong like eating from the bin would keep doing it as fast as he could until we got as close as possible and would dash  away for his life! But this was a human being, and not even a baby or a child. Yet she was confusingly behaving like one.

I just about had enough and I tried everything I could think of without having to treat her like a child.I asked if I could quickly look at those shoes and locked them away in a cupboard behind me whilst endlessly apologising and saying I just had to do this, it was for her own good and ‘please please just trust me that I didn’t want to have to do this.’

Dorothy was furious! I could see the blood rising to her face and her eyes were the biggest eyes I had seen in such a fragile wrinkled face. My heart sank. This was not me! I could not be this cruel! But I couldn’t stand seeing her walk around like she had no-one there to take care of her. She sat down with anger bursting from her pores, clenching and digging her hands into the bed and said:

Dorothy:  Who do you think you are?! How old are you anyway? Are you like…15?? I’ll have you know I AM…………

Silence

Dorothy: I am….much older than you and will not be told what to do like this! You’re just a child and I am……50ish! Yeah, I’m 50ish!

I just felt awful. I wanted to hug her, to touch her arm, have her cry on my shoulder while I apologised. I had always had so much respect for the elderly, and I felt scorn towards anyone who treated an elderly in a patronizing or cruel manner.

I told her she had to take the tights off too and please not argue with me. She reluctantly did it and from that day those tights have been hidden!

That day I had the bedroom door slammed on my face and evil looks thrown at me for several minutes after yet another incident.

I went downstairs and began to fear coming across her again after she got changed. A few minutes later I looked out the kitchen door and Dorothy was coming down the stairs looking glamorous and gorgeous in some nice pair of leggings. She looked at me, smiled sweetly and said: “oh! hello. Good morning. Did you sleep well?”

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An independent woman


A drawing of a photograph of Dorothy traveling at sea in her 20s.

If I was to stay at this job for at least another year several conditions had to be met: I would need to keep earning good money (as all things aside) my ultimate goal was to go back to University and maybe travel back to my home country for a while as I was terribly home sick and in desperate need of some time to find myself. Being a fresh graduate I could not think of another job that would pay me as much. Well, that condition would certainly be met.

Next I would need to give it my all, because this wasn’t going to be anything like the several menial jobs I had done before where you do as much as is expected of you and you retire home to the comfort of your life. From early in the morning to night time 5 to 6 times a week my life would be spent beside Dorothy. And more than do what was expected of me (to be a carer) I wanted to do what I expected of me. I knew I could do more than simply bath and cook for her. I could learn as much as I could about her condition and strive to improve all aspects of her life using all the psychological skills I had learned.I wanted to prove myself capable and be more than just a carer. So soon I became Dorothy’s care co-ordinator. The difference between that and a carer mainly being that instead of me being given a list of things to do I would study the situation and make the list myself. That suited my personality and needs much more.
So I thought the conditions for me to stay and succeed at this job were being met. But there was much more. Dorothy wasn’t just a sufferer of Alzheimer’s disease, a dementia patient, a disabled elderly. Dorothy was an extremely independent woman in nature with a fascinating story to tell. If I compared my age to hers she had lived at least 2 or 3 lives more than me. She was bound to have a very distinct personality built on top of so many life experiences. What good would it be to understand that with dementia one’s working memory (or short term memory) is usually affected before their long term memory if I didn’t know the depths of her long term memory and what recollections and stories lay so hidden in there? Dorothy’s niece was able to give me a brief of her personality and history, but I was advised to speak to Dorothy’s myself and find out the rest.

This woman could not remember my name or who I was, she didn’t seem to know who her niece living in the house was and definitely didn’t seem to have a concrete knowledge of even where she lived, but she knew who she was! I took her out for a tea in town and began digging.

Dorothy was a sibling amongst 8, with 5 brothers who had passed away, one younger sister who regularly visited and cared for her and one older sister who lived further away and occasionally visited. But most interesting of all: Dorothy was a Miss. She never married and had no children. Now that is quite a rare thing for a lady in her 70s and I see that I’m not the only one to react this way when people out in the street constantly assume that I am Dorothy’s granddaughter. How she never got married I found hard and at the same time easy to understand: Dorothy was a traveler. She also had a best friend of over 50 years, Jean (also quite rare) who accompanied her in adventures in Spain and America. When looking through old photos with Dorothy and Jean I also found out a very interesting fact: Dorothy had a bl***y good taste for men! Wow the boyfriends she had! And how pretty was she?? She still had the same smile, the same little twinkle in her eyes that you see when she sees cute kittens on a TV ad or when her beloved niece walks through the door and sends a wave of happiness through her making her so giddy.

There was so much more to Dorothy than dementia, than a brain that is disintegrating leaving it not recognizing people and places, not understanding complex sentences, not finding the words she was looking for anymore. Yes her life was heading to a sad, sad end. But it had been such an interesting, happy life! Why waste her remaining lucid moments only concentrating on those?

So I found the missing piece – the last condition that needed to be met for me to stay and succeed at the job: get to know Dorothy for who she really is in her heart, and not just in her brain.

That INSOLENT girl!


By Anna Nogueira Nicolau

I had just about decided that it was time to go downstairs and face the wrath of the little lady.

I had not been in the job 10 minutes until Dorothy’s rage was unexpectedly (and dare I say: quite unfairly) thrust upon me. But then again to her eyes who the hell was I? She didn’t know I was her carer. She didn’t even know there was anything wrong with her deeming her to be in need of care. I did tell her that I was there to take care of ‘things’, of the house and to do whatever she wanted me to. So basically… I introduced myself as her servant. But did she remember that? Even if she did: I was still a stranger, and what do strangers NOT do when they are left with you for the first time? Lock you in your own house! Gosh she had every right to flip out at me. How would I feel if I thought there was nothing wrong with me and suddenly I’m left with someone who I can only assume is a lunatic trying to kidnap me in my own house? Hmm….
Putting myself in other’s shoes always did give me a more understandable angle at which to view a difficult situation, and made forgiving someone’s rash actions much easier. But I still hurt. I had just gone through years of University, constantly in need as I scraped for money. I had just moved to London and got into a well paying job. Things were going great for me. I would have all the money in the world to save for the future and to enjoy all of the infinite things London had to offer on my days off! But this just hurt so much. Was I prepared to sell my dignity for this? I had always thought of myself as someone who felt a lot of respect for the elderly, but then again that was before I got talked to like a dog – by a very nasty owner.

‘Calm down Anna’ – I whispered to myself  – ‘don’t let your emotions judge the situation. Dorothy is bound to have been as scared as you. It has been a while since you heard her pacing and cursing by the front door and given that she has dementia and you gave her some space she has probably forgotten the whole thing.

But I couldn’t have predicted what happened. I entered the front room to find Dorothy angrily pointing her finger at a vulgar, loud woman on the Jeremy Kyle show. Along with finger pointing came shouting.  What was going on?? Had she forgotten? Why was she now angry at the TV? As she turned to see me I stood there literally expecting ANYTHING by now. I was warmly greeted. What I was told baffled me:

“Oh, where is that girl?”

“What girl?”

“That INSOLENT girl! I am so angry! Is she gone??”

By then I realised I was the insolent girl. But at that exact moment I was not I. I was whoever Dorothy thought I was: someone who she felt it was safe enough to confide her feelings about the front door incident to. I took it as an opportunity. I was going to hear everything she had to say about me.

“That insolent girl telling me what I could and couldn’t do. In my own house! My own house! They’re always trying to keep me in this house! Why? I don’t understand! I have my own house to go to. And then she’s been going off having babies with all these men! Why would you steal your own father’s money like that?…And oh all the shouting and the bad language! Oh she is so rude! So rude! I am so cross!”

“…..Eh…….what?” That lost me completely. All I could come out with was: “Well Dorothy look: I walked past the front door and saw her leave. She won’t be coming back I can assure you. Please don’t worry. Is there anything I can get you?”. She looked at me as if I was her saviour and like a toddler who had just wasted all of her energy in some nonsensical tantrum she wound right down. But her eyes lit up again as she caught sight of the TV. Of course! Jeremy Kyle! That program makes my own blood boil, imagine what it can do to a confused and extremely angry woman with dementia? I quickly switched over the channel and decided: I was going to read up a lot more on dementia. And I was going to stick with this job! Not only did I just witness an episode of pure despair that I no longer had the heart to walk away from something told me this was actually going to be quite fun!

My first day-slash-breakdown


By Anna Nogueira Nicolau

7.15 am: my alarm clock went off. Usually I might struggle to get out of bed and I might even stay for a bit longer. But not on that day. I had slept on the sofa as Izabela (my stepmother and carer who I was replacing) was still sleeping and was due to leave the job permanently in the morning after Dorothy’s family came over to say their goodbyes. I could not imagine the magnitude of the awkwardness if Dorothy was to find me sleeping in the living room. I was still not clear about her position on me coming to stay in Izabela’s place let alone sleep in her sofa bed without her consent

After making my bed I quickly ran upstairs where Izabela was still in bed calmly rubbing her pregnant belly. She gave a good sense of security and although I was nervous as anyone on their first day at the job I did not panic or even think I might not be fit for the job. I had done some respite care for a boy with Autism before, and I had a degree in Psychology, so whatever came my way I was bound to be able to handle.

Soon Dorothy’s family began to arrive and I was surrounded by women who can talk even more than me! That is not something you see everyday. They are Dorothy’s sister and her nieces – Rebecca is the one who also lives at the house and is legally responsible for Dorothy, so in short: my new boss. From the floor I sat looking at Izabela – the only person I really knew in that room and she was about to leave. But I tried not to think about that and enjoy the fact that soon I’d embark on an adventure of a lifetime. After a lot of chatting, swapping of goodbye cards, presents, hugs, kisses and perplexed looks and smiles from Dorothy everyone decided it was time to leave. All at once.

Only now can I imagine how overwhelming that whole situation must have been for Dorothy. Lacking enough memory and possibly face-recognition to even recognize her own niece who has cared for her for several months, she has just settled down watching TV, is used to a quiet life and suddenly has a house full of loud women talking about things that she cannot understand or remember for long enough to follow. And suddenly again they are all gone.

Anyway these people were leaving now so Dorothy was bound to settle back down and be happy for the rest of the day. But no, when I walked over to the front door to wave goodbye to Rebecca and the guests Dorothy looked at me with the most defiant and amazed look as I locked the door and demanded:

-“What the hell are you doing?! Who the hell do you think you are to lock my front door in my own house? Give me those keys right now or open that door now! I am leaving for home.”

-Ah…eh…hmm…well… – I replied in complete shock and fear for my life. She WAS home! What was she talking about? Did she not think this was her home? Did everyone suddenly leaving make her think it’s bound to be her time to head off home too?

-So??

-You see, it’s a bad habit of mine, I can’t relax unless I always lock the doors behind me.

-Yes, but I must go home now and I need the door opened. Open it right now please!

“Please??” I thought. That did not sound like a sincere please to me.

My heart was pounding, my throat suddenly dried up and my hand couldn’t quite hold on to the keys as it did before. I could not believe what was happening. Never did I guess I would be verbally assaulted this way. I was under strict instructions to lock all doors and not let her out alone. I wasn’t ready for going out with her either.

 The two truthful reasons as to why I was locking the door were that she can’t go out on her own lest she gets lost or ran over by a car in the process, and that I was told she wasn’t allowed to go out. Either of these answers should have settled that if only Dorothy was aware that she had dementia and if I hadn’t been told by Izabela that “Dorothy hates being told what to do”.

Not knowing what to do I started digging myself a hole, sounding squeaky and forgetting my words – English is not my first language and under stressful situations such as job interviews, public talks and now this incident I sound like I have barely scraped an intermediate certificate for speaking English after cheating on every test.

Desperately I mumbled that I needed to go get something upstairs and cowardly run up to my room. Like a child I burst into tears, and instantly felt sick with myself. It had been 10 minutes on the job and I was already breaking down! “I know, I’ll just sit here until she tires, forgets about the whole incident and it will all be fine.” I thought to myself.  But the clippity clop of shoes pacing by the front door begged to differ. Random facts about dementia started running through my mind: as forgetful as they can be, demented patients have a stronger memory for emotional information. And ‘oh boy’ was this emotional?

After 10 or 20 minutes of composing myself and re-thinking the pros and cons of this job I prepared to go back downstairs. Would she be waiting for me, knife in hand??

Meeting the flimsy little lady


Dorothy was this sweet, flimsy little woman who compliantly (in a strangely also defiant way) followed the rushed and caring Polish carer who she seemed attached to by an invisible rope.

When  I arrived with my big suitcase to take the care job in Uxbridge  she greeted me indiscriminately, not knowing who I was, why I was there and not seeming perplexed as to why I started walking by her side and talking over her tiny head to the Polish carer on her other side.  I thought I ought to introduce myself and let her know I’ll be staying…How rude of me to have skipped such a necessary step for the beginning of a ‘normal, easy-going relationship’. But little did I know this would not be a normal relationship.

The announcement of my stay was met with an indignant look: “I wasn’t told about that!” she accusingly said to the rushed carer. While that startled me and enveloped me in an air of awkwardness her carer Izabela shrugged her shoulders, laughed and said: “Yes you were. I told you many times.” To that my nervous smile coincided with Dorothy’s yet again confused, indignant expression.

During the rest of the walk I attempted to better  introduce myself and explain to an already confused old lady my complicated relationship to Izabela (my dad’s girlfriend and soon to be mother to my youngest brother) and my background (born and raised in Brazil, having lived all my teenage years in Northern Ireland and moved to Plymouth for University – and I must add: all of that said in a very mixed accent). She politely pretended to follow and be interested in all that.

 For the rest of the day I watched the stubborn tiny woman be hurriedly and efficiently (yet with a lot of caring attention) guided to bath, to dress, to have her dinner and to go to sleep.

Being in a hurry to quickly train me for the job in half a day the bath was given quite quickly. Complaints such as:  “how little water!”, “I don’t remember the last time I had a bath for longer than 5 minutes” were certainly not measured or scarce.   Between complaints and bickering a complicated loving relationship seems to show through.

I looked forward to the day that I would be left to become her carer. I also feared it immensely. The very next day would be it and I would be left free to use all the useful tips I recorded in my notebook in my head. I would also be able to do things my way and possibly apply as much of my knowledge and skills recently gained as a Psychology graduate. What I didn’t know is that it would take several weeks of cohabitation and work  to tailor a care style that would cater for both of our needs.

—-

While I though: “how much work can such a tiny, flimsy lady be?” reality soon struck that I was not prepared for what such a tiny, flimsy lady with the necessary neuro-degenerative condition can put me through in only five minutes!