Early dementia

 My mother hasn't laughed in over two years. She hasn't smiled in over two years unless she's posing for a photograph, when she manages to fake it for 30 seconds. My mother has depression and anxiety and she is being kept medicated below normal so she doesn't keep peaking and troughing like a yoyo. The peaks and troughs were horrendous but now she just functions. She doesn't have any character. It's like she's been lobotomised somewhat. Able to talk and read and walk and do yoga but void of any personality. Any personality that I recognise as being my mother. I miss her so much. She is not the person that brought me up, full of excitement for life. She is an empty shell. My father is on antidepressants to deal with it. I don't know how he does it. Day after day with my non-mother. He must not recognise his wife in there. The amazing wife who wanted to travel and discover and live life to the full. He must be in so much despair a lot of the time because it's as if 80% of her is dead.
I get angry a lot of the time. Simple things she is incapable of doing. Simple things. I gave her my old iPhone and spent hours teaching her how to use it. Simple things like emailing. Yet she picks it up once a week and refuses to try. I really needed the money from selling it but she begged me to give it to her. She promised she would practise every day. Send emails. Every time I return home I find it covered in dust. She hasn't picked it up for weeks. She therefore forgets what I have shown her. And begs me again to show her. I have no will left. I get impatient then angry then I shout and then I cry. She makes me into a monster. I hate myself. I try to be calm and patient but she pushes and pushes until I explode. Then I cry and hate myself once more.
I hate who I become when I'm with her. I resent her for not wanting to be better. I shout at her because I'm so frustrated. I can't bear to be around her. But I miss her and love her and don't like this person my mother has become. I don't like the stranger. I don't like her. It's as if a hideous stepford alien being has put on my mother's skin. I don't like what's inside. This anxious frail uninterested dull person. Where has my mother gone? Where can I find her? I cannot bear to think of her not being in my life anymore.

Single with Rheumatoid Arthritis

On Friday 11th August 2017, I was diagnosed with Rheumatoid Arthritis. I was getting pain and swelling in my wrists and fingers and couldn't figure out what it was. I thought maybe I had torn ligaments in my wrist after doing a fairly strenuous pilates class. I laughed it off thinking I had once again injured myself by doing something a bit silly but after a few days, when I cried out trying to lift the kettle, I began to get more concerned. I took myself off to A&E where they sent me for an x-ray and told me that I hadn't sprained my wrist or torn anything but there was definite swelling and heat in my wrist and I should probably go back and see my GP.

My GP did blood tests and said the results indicated my rheumatoid factor was very high. I didn't know what that meant. She gave me an immediate referral to a Rheumatoid specialist in Winchester and 2 weeks later, I sat in her office and cried and cried as she told me how this illness was now with me for life. There was no cure. It was something that could be managed but I should be prepared for my life to change and I would have to begin making major adjustments.

People say you go through 5 stages of grief when you are told something that is so significant as to change your life forever: Denial, anger, bargaining, depression and acceptance.

I think I am still in denial. I have only told a handful of people about the diagnosis because I thought I would get better. I thought as soon as I started the drugs, then things would improve and I could carry on as before. But it is becoming very clear that RA is not something that can be fixed. It can take months or years before the RA is controlled. It is so debilitating that my own Doctor has told me that I simply cannot keep going at the same pace and I must stop working. Stop working? I can't stop working. I am a freelance designer and if I don't work I don't get paid so how can I survive without working? Slowing down was not an option I thought. I will be fine. The doctor is just being cautious.

I think they missed out one of the stages of grief... panic. Because 6 weeks in to this illness I am crossing over from denial to panic as the reality sets in. I have only worked one day in over 10 days because I have never in my life felt so dreadful. Utter exhaustion that is so overwhelming I can hardly string a sentence together or stand up for more than 10 minutes. Dizziness and nausea, headaches and earaches, an ache so deep that it feels as if it's in my blood. Pain and swelling in my hands and wrists and fingers, stopping me from holding a pencil or a mouse or anything that I have to use for work. 

I wake up every single morning and hope that today I will feel better, that the drugs are beginning to work, that every single little tweak I have made in my diet and life is improving my health day by day and that today will be the day I can get up and go to work. But every morning I am being beaten by this illness. And now I am beginning to panic. I'm panicking because I am not earning any money and if I don't earn any money, I am in big trouble. I have no back up plan, or secret savings. I have no wealthy parents or husband or friends that can help me out. I have no one and have never felt so alone as I do now. To live with an illness on your own is one of the toughest things I have ever experienced. 

I have told my sister. She simply replied in a text: God, it sucks getting old doesn't it? She has no idea what I am going through and has no intention of finding out. She doesn't care enough to find out. I can't be bothered to educate her and so I don't. It would do no good. She has always been an incredibly selfish person and her way of compensating is by saying she has problems too. I sent her a text saying I had only worked 2 days in 2 weeks and I never heard back. She only lives in the next village and has never once offered to help me or to come and visit. I literally don't understand her. If I found out she was ill I would be there as often as I could. I would be at her side as much as possible to offer comfort and support. Yet she doesn't ring or come by.

I have told my parents but I have not told them how debilitating this illness is or how much time I am taking off work. I can't worry them because my mother suffers from depression and anxiety and it would simply tip them over the edge. I am therefore still in denial aren't I? otherwise I would be telling people. The thing is, the ones I have told just tell me it sucks. They don't really get what this is doing to me. They think I will recover that I will simply get better in a week or two. My doctor is the only one I am honest with, and in return she scares the shit out of me by telling me to stop working, stop driving, stop writing. She tells me to claim insurance but stupidly my insurance policy only pays out if you've been ill for 3 months already. If I took 3 months off work in order to claim insurance then I would be so ill from stress of having no money and not working. 

I've worked out that in order to survive, basic survival, without any money for anything extra, I need to work at least 2 days a week. That sounds crazily minimal but it would just be enough to cover mortgage and bills and petrol and food. I could survive on 2 days, it's wether I can physically manage two days right now. Seems impossible. It's taking me an age to write this because its actually really hard to type with my right hand and also to make sense of words and to actually use my brain power without feeling deflated. I had to cancel 3 days work this week because I just couldn't get out of bed. I don't sleep well, I'm in pain and so I don't wake up feeling in the slightest refreshed. I feel at my worst first thing in the morning. Utterly depressed and useless. I cannot see a light at the end of the tunnel. 

I reach out to anyone to help and advise and support but I get nothing back from my friends or family. This illness is not known about, especially with someone so young, so I don't think they realise how bad it is. The only support I'm getting is from volunteers and charities, from my doctors and nurses who can see how ill I am. No one else. Maybe they think I'm exaggerating or am work shy. I don't know. But this is the toughest thing I have ever had to deal with on my own. Being single. It sucks almost all of the time, but now it sucks more than ever. No one to give me a cuddle when I ache. No one to bring me a cup of tea or go shopping for me. No one to look to for me and say kind things. Someone to believe me. Someone to love me.

Could it be dementia?

My mother has suffered from anxiety and depression for the last few years but now I'm almost positive that we have to add early onset dementia to the list.
She has begun to do and say things which don't seem to be symptoms of her anxiety or depression. Here are some of them:
She struggles to find the correct word for something and will use other words to describe it, for example, a toaster might be a bread cooker.
She has begun sneaking around the house, trying to find fault with things that I do. Last night, for example, I asked her to fill the kettle for me and switch it on so I could fill two hot water bottles. She did and then went upstairs. I am staying in the spare room which happens to be on the ground floor, so I went into the kitchen and realised the kettle wasn't full so topped it up with water and switched it on again. My mother rushes in to the kitchen and in the most passive aggressive way ever, looks at the kettle and says, "Oh that's strange, I'm sure I didn't fill it all the way to the top. Hmm how odd that I don't remember that. Unless you filled it up. Did you fill it up?" I tell her I did fill it up and then return to the spare room and wait for it to boil.mI then hear her in a very loud stage whisper, tell my father that I'm going to break the kettle, that it should never be filled up and that she needs to empty it immediately otherwise it will ruin the kitchen. This is a prime example of her completely overreacting but then talking about me behind my back. She then creeps downstairs (although I hear everything because the house is so old and everything creaks) and she goes into the kitchen and pours out some of the water. I catch her doing it and say, "Oh I'm sorry, was it too full mummy?", and instead of saying, "Yes darling," she stands there and lies. She says she was popping in to the kitchen to get a biscuit out of the cupboard. I asked her where the biscuit is and she says that she doesn't need it now.
I am living in a mad house and I don't mean that weirdly. But every single hour of the day is like the above example. She talks in riddles and lies to my face. She creeps around finding fault with everything I do and totally overreacts if something is not how she wants it. She cannot have a normal conversation because she lies about everything.
Just this second I asked to come to her yoga class and she tells me it's full. She can't possibly know it's full but instead of saying, actually I would rather go and do yoga on my own, which she obviously means, she just lies. It's not as if it's the kind of lie to protect my feelings because most of the lies are so nonsensical. They don't make sense.
So now, as well as the depression and the anxiety I have to deal with this strange behaviour. It is totally forgivable as long as she gets it checked out. But of course my parents are both in complete denial and refuse to believe there is anything wrong. I can't take it.

My critical Mother

Most of my feelings of complete lack of control over my life have come from living at home with mum and dad for the last year. I am 48, I had massive surgery on my knee last November, and had to return home for 4 months. I then had set backs, needed to sell my London flat, and here we are, 12 months later and I'm still having to use their house as base. Imagine being at home for a year with your elderly parents and then add fucking depression and cancer to the mix. Mum's depression, Dad's cancer.

I hate mornings, especially I hate early morning when I wake, yet again, in my parent's house. I used to love waking up early. The quiet and calm. The pottering around my flat hours before anyone else had woken up. I like to wake up gently. I don't like to be questioned, asked how I've slept (especially when I only manage 5 hours a night) or constantly nagged or criticised about something.

Mum, with her depression has become anxious about everything I do. She criticises everything from how I cook toast to what plates I use, to what I put in the bin, to using the washing machine, running the bath, what shelf I put my food in the fridge, where I put my bread in the larder, to having my window open by even a crack, in my bedroom. It doesn't stop. But it is never a straight forward request. It is a passive aggressive criticism, a twisted way of saying things I do really annoy and upset her. This morning, she did the typically passive aggressive thing by saying something mean, hidden behind pretend concern.

I woke up at 5am, freezing, so I crept to the kitchen to get hot water bottles and a cup of tea. I crept silently, in the dark, down the 15 metre hallway (the spare room is on the ground floor) until I got to the kitchen and then put the kitchen light on. I was super quiet. I pushed the door closed. The kitchen light is not bright. At 9am, my mother greets me at breakfast by saying ,"Oh darling, you must have got up early. The light woke me up but it's ok, I managed to  eventually find my eye mask and put that on. I didn't get back to sleep but it's ok."

I was incredulous. "Mummy, you're saying the downstairs kitchen light woke you up. The light travelled through the door, down the long hallway, up the stairs, through the crack in your bedroom door and woke you up." "Yes, but it's fine. I don't mind. It was bright that's all. And I don't need much sleep anyway." I began to explain that it was impossible. The light couldn't possibly have woken her, it must have been something else, but my father glared at me and said, "It was the light. Her eyes are really sensitive."  She then gave me a small smile and came to hug me... as if saying, it's ok, I forgive you. But I shrugged her away. It was a reflex reaction because I was pissed off. I'm sick of being made to look bad for doing completely normal things, and yet again here I was being blamed for her waking up, which was a blatant lie. A bloody stupid ridiculous lie. And the way it comes across is with this passive aggressive fuck fuck fucking attitude. I absolutely detest my mother when she does this.

There I've said it. I hate my mother when she has her depression. I hate my father for enabling her and backing what she says, and I hate myself for reacting the way I do.

My Mother's Depression.

I have just woken up, trying to remember the exact words my therapist said to me before she ended our Facetime call. You can't control it and you can't fix it. Remember that.
Yes, my therapist and I are terribly modern. We don't do actual visits any longer. Now that I am so transient and never know which city I will be in from week to week, it's easier to arrange an evening FaceTime call than try and make it up to Covent Garden. My therapist and I have an interesting client/patient relationship. I began seeing her about 6 years ago when I began having debilitating panic attacks. A friend of mine had studied under her at university and said she was truly inspiring, so I looked her up and voila, my therapy sessions began.

Of course, as anyone that has had therapy knows, you think you are going in to sort out one problem but you actually end up talking about a whole stream of other issues. We never really got to the bottom of the panic attacks but we did start talking about some major things that had happened in my life. Things that may be affecting my behaviour now. And it has helped me beyond my imaginings. Six years on, I now only see or talk to her when I'm on the precipice. This is what I call my moment when I am so stressed or unhappy or out of control that I feel as if I'm on the edge of a cliff, about to fall (or throw myself) off. I have these moments every few months and immediately call her and arrange an appointment. 

We have been talking, recently, about my mother's depression. My mother has clinical depression. It used to be called manic depression but now it is labelled bipolar. I think it's too simple a label for what she has. From memory, I can only recall two moments in her life, up until now, where she has shown signs of depression. The first time was when I was 17, and I remember her suddenly going very quiet, losing lots of weight had sleeping all the time. It lasted about 3 months. She wouldn't leave the house much and couldn't make decisions. She looked terribly sad and couldn't explain it or figure out what had suddenly triggered it. The second time was on her 50th birthday. We were living in America and we had arranged a small surprise party for her. I went upstairs to try and hint what she should wear that evening and she clicked that there was going to be a party. Something snapped inside her. What would usually have been a good surprise and joy at her seeing her old friends suddenly overwhelmed her. She sank to the floor and burst out crying. She refused to get dressed or move and sat there the whole evening. That depression also lasted a few months. 

Fast forward 20 years to a few months after her 70th birthday. She began to go down. It didn't manifest the same way as before though... looking sad and sleeping loads, it carried on going down, deeper and deeper. She refused to eat and would sit there with a haunted look in her eyes, shaking and rocking, unable to speak or voice what she was feeling. She didn't sleep, she wouldn't leave the house. She hid. We got an army of help. Her doctor referred her to a specialist who got a therapist and a psychotherapist and she was looked after. The doctor tried different drugs and we tried to keep her eating and doing small amounts of exercise. But it's not a science and you can't give depression a pill and a hug and make it go away. It takes months and months. of trial, error and the most enormous amount of patience. I honestly thought she would never come back from it. She had lost so much weight that she aged 10 years. She would then pull at her skin and cry out at how wrinkly she was, not understanding that the weight loss had caused it. Even her own vanity wouldn't convince her to eat. My beautiful and beautifuly healthy , vivacious, brilliant, chatty, smiley, extrovert mother, disappeared overnight.

There is no rational with depression. You can't explain what the noises are that she is hearing, or try and make her smile. You can't stop the birds flapping, or the neighbour's dog wagging its tail. You can't stop the postman coming to the door or the telephone ringing. We would find her at 4am with a 100 incontinence pads laid out on the floor because she was convinced she was going to wet herself. She never did. It is exhausting and aging, not just for my mother but for the family, my father especially being primary carer. But Dad is another story... a staunch traditionalist who believes mental illness is weakness and shouldn't be talked about. That certainly hinders things. 

It is now 5 years later and my mother has had 5 bouts of depression (one a year lasting 3-4 months). Each one manifests slightly differently, but each time, the downward spiral is less severe. This is what the doctors hoped for with their cocktail of pills and therapy, that each depression would get milder, that each manic period (her high following the depression) would be shorter too. This last bout, however, has lasted since April. It has been more anxiety and less full blown depression. But she hasn't laughed or smiled since then. 7 months without hearing your mother laugh. 7 months of seeing her shrink (you cannot force someone to eat no matter what anyone tells you). She is only 75 but she looks 90. She is grey in pallor, hunched over and so frail, like a tiny bird who's bones might break if you squeeze them too hard. She refuses to change her clothes and wears the same outfit for a week at a time (thank god she does change her underwear though) she smells slightly stale and her hair is greasy. She has a bath every night but it is so quick I cannot imagine anything really gets washed that well. And the worse thing is that I cannot bear to hug her. It's like hugging a dying child. Spindly arms legs and shoulders. Her head is too big for her body and she shuffles around in her oversized clothes and unwashed dressing gown. If I dare to suggest she changes her clothes or I wash her hair for her, my father tells me to shut up. He won't let me talk to her when he's around. He won't let me talk about her depression or ask her how she is feeling. I am metaphorically gagged. I might as well be in Saudi Arabia because I have never in my life felt so helpless and unheard and terminated. I have only ever been able to express myself with words but when I am no longer allowed to speak then what else can I do? 

My therapist says that I have to concentrate on being there as a support when they need me, offering my help as often as possible, but not trying to fix them. I cannot fix them. I can only fix myself and the way I react to them and the situation. She says I must try and not control their lives. I end up wanting to punish my mother for being ill and I want to punish my father for being so stupid, ignoring the situation. I say mean things because I'm so upset. I see her stand on the scales, see her weight drop by another pound a week and say it's disgusting, that she's like a skeleton, as if shocking her might trigger something! Instead she then sits there looking at her feet like a wounded animal and then I hate myself and feel like shit, feel like a horrible school bully, and lock myself in my room and don't speak to them for the rest of the day because I fear what will come out of my mouth. 

I have to just stop. I know that, given the chance, I would do everything differently - taking mum for therapy everyday, making her change her clothes and wash her hair on a daily basis, make her eat more and try and encourage her to take more care of herself. I've just realised I've used the word 'make' several times. I actually cannot make her do anything because then I would be the control freak and not my father. By ignoring the situation my father is not helping. By refusing to talk about it, does not make my mother's depression go away. Yet I am unable to change it. I cannot control it and I cannot fix it. And the sooner I understand that, the better.

Crying

I can’t remember a day in the last 11 months that I didn’t cry. Crying for a multitude of reasons, not just because I was sad, although that probably makes up about 85% of the tears, but crying because I was angry, frustrated or in pain. No happy tears unfortunately.

I have read that there are different chemical compounds, depending on the type of tears we cry. We have Basic tears, which keep our eyes lubricated and appear as we blink. Reactive tears, which appear as a reflex response, like when we peel onions or get something caught in our eye. And then we have Emotional tears, which can be happy, sad, angry etc. Emotional tears are the interesting ones to scientists, however, because not only do they look different under the microscope but they taste different too. Emotional tears, especially the ones produced when we are grieving or unhappy, are produced when our stress hormones increase, so they are actually denser and contain more sodium. They sting because they contain more salt and the more they sting, the more we rub, hence red swollen eyes. The sweetest tasting tears, of course, are happy or laughing tears where no stress is released so there is not as much salt.

Only humans have Emotional tears. No other mammal has the capacity for this sort of crying, no matter how many photos you’ve seen of elephants or chimps with a slow tear rolling down their faces. I sometimes wish we didn’t cry. I feel so exhausted and dehydrated from crying all the time. I know it’s a stress relief but the after-effects are horrible. My face is almost always puffy, eyes red and sore, I have constant headaches from the stress and tension of pushing out difficult tears of pain. It is not a healthy way to be.

I had extensive survey last November and now have a titanium lower thigh and a high-grade plastic knee. I couldn’t move my leg for 2 months and was out of action for almost 4. I had to leave my flat in London and at the age of 48, move back in to my parent’s house in a tiny village in the middle of Hampshire, so that I could be looked after. The shock to the system of intense pain and complete silence was huge. I had only a few visitors, the ones able to get time off to visit from London, or a smattering of family. People find it difficult to cope with other people’s pain. They either over-comfort or change the subject when I wince or cry out. And the trouble is, 11 months later I am still crying out.

They now say I have chronic pain. Pain that never goes away. My leg, physically, has been mended. The titanium is in the right place and it is all moving correctly. But when you think what has been done inside, the invasiveness of the surgery, I’m not all surprised that my leg doesn’t like it. Naturally your body wants to expel foreign objects and I honestly think that if the metal and plastic weren’t physically bolted and cemented into my bones, then they would force themselves out through my skin, desperate for air. That’s what it feels like. My body just doesn’t like it’s new visitors. And now, almost a year down the line, my good leg, my right leg, is in the same sorry state of disrepair as my left, and also needs the same surgery.

I have named my knees – Lulu for the left one and Ropi for the right – so that I can swear at them and tell them what I think. I can converse with them and ask them to behave. I can’t unfortunately, ask them to leave, like an overdue drunken guest.

I sometimes wake up and find my pillow wet, having cried in the night without realising. I have never screamed or sworn as much in my life, as I do physio every single day and feel no improvement whatsoever. I have had second surgeries and endless MRI’s to see what needs to be done next and yet, when I then see other people suffering, I realise how pathetic I must seem. At least I have my legs, and I have been helped. Others haven’t and can’t. I tell myself to pull myself together and fucking stop crying but then there is so much other shit going on that I sometimes feel justified in my self pity. Self pity is a disgusting selfish emotion. I cry and then hate myself. I then cry for hating myself.

Everyone has an opinion on my crying and most people think I’m depressed. I don’t think I’m depressed, I know it for sure. What I won’t do is go on antidepressants. And the reason I won’t go on antidepressants is because currently my Mother is on them – for her manic depression – and my Father is on them – to cope with my Mother’s depression. And they are the ones I’m sharing a house with. Two depressed parents. As if it couldn’t get any worse....

My arse in an airplane seat.

I’m worried about my arse! I’m not usually worried about it... in fact, when I do think about it, it’s usually when I see it in a dressing room mirror, from behind, at an awkward angle, and I think my God that’s a good chunk of bum, but at the same time I’m annoyed that it doesn’t fit into many jeans or trousers. 

I have a large posterior, always have done, and it does get a lot of attention from a certain type of male. The certain type of male that likes voluptuous round arses funnily enough. But that’s not the problem. The reason I’m worried about it, is that next week I have to squeeze it into a small seat on a small plane, for ten hours on a flight to Cuba. I’m fine in normal airplane seats but I get the feeling that this might be a bit smaller than the normal jumbo jets and that I’ll have to push it down, between the arm rests and hope my neighbours don’t mind an extra bit of bum and top thigh pushing against their own. 

Most people look at me and see a pin head, then they look further down and see ample boobs and a waist. But then my body sort of explodes outwards... I am a very peary pear-shape and it takes people by surprise. I stupidly have changed my seat to a window seat and realise my bottom will have to pass two passengers to reach its destination. My big bum inches from their faces!! I just hope they don’t tut or sigh loudly and don’t roll their eyes or give their other neighbour a knowing look that says.. oh great, we’ve got a fatty next to us! For ten bloody hours!

Or let’s just hope they are one of the people that favour the larger derriere, then I’ll be fine!