Ghosts from the Past

This weekend I took my lovely boyfriend home to meet my Mum. Before the event I was worried about how she would behave and whether I would end up in my standard ball of stress like I do every time I spend time with her.

For the most part I had nothing to worry about. My mum is absolutely smitten with him and keeps asking me why I kept him hidden for so long. For the record I didn't hide it, she just happens to be hundreds of miles away and forgetful. I can never escape the stress completely, there were a couple of melt down moments and a few times she started crying and shouting at me, but never in front of him. I think because he didn't see that side of her he found some of my treatment of her a bit cold.

Maybe I am cold and callous towards her and the situation at times, but emotionally detaching myself from it all is the way I've learned to cope. This is a throwback from my teenage years where I kept everything inside and that didn't end well at all. He made the point that I need to think about whether, if I was in her situation, I would be happy to be treated the way I speak to her. I think I would be, but I'm not sure. That comment left me crying at brunch and left him feeling a little bit awkward, understandably.

Whilst I was up in Scotland my flatmate went out with my work friends and ended up meeting the guy I was seeing last summer and now they are talking. Talk about a small world! I think I'm ok with it all, but I don't want her to get hurt in the way I did. Nearly 10 months on and I've still not had an apology but he has suggested meeting up because he wants to clear the air.

I'm not sure I want to go through with it, but I think I should probably be an adult about it all. I mean thanks to the way things turned out I now have an amazing man and what some may even call a proper grown up relationship. He knows all about this, but I'm still worried that in some way meeting up to maybe get an apology will hurt him. Who can tell.

Things Change - Nothing Changes

It's been a long time since I felt the need to write down my thoughts, and a lot has changed in that time. 
I'm living in the same place, but with a new person. I'm working for the same firm but I have a new role. I'm keeping fit but in a new way. And I'm in a happy relationship with someone who loves me for who I am.

In a couple of weeks I'm going to be taking my new boyfriend home to meet my mum. I met his family a couple of months back so I'm not afraid of the 'oooo commitment' kinda thing. But I do worry about how he'll see me after my mother brings out the best and worst in me. 

The frustration I feel when trying to deal with her can't be hidden, and in the past it's led me to make some pretty shitty life choices if I'm honest. But those choices got me to where I am today and have made me who I am, so in a weird way I'm thankful. I'm still scared though - what if he sees me getting wound up by her and wonders why I don't show more compassion? What if she winds me up so much I start taking it out on him? He doesn't deserve that - but I shouldn't have to internalise it and deal with it alone. 

Today I sent her an email to confirm the dates we would be coming up (written communication works best with her disease, things get lost between telling her and being written down + the ability to write has become a frustrating and sometimes fruitless task). Within minutes I had a phone-call and voicemail, but I was making muffins so hadn't picked it up. The phone rang again and she's agitated and telling me her iphone has rearranged itself and that I didn't tell her which dates I was coming. I put on my soothing voice and try to figure out what's wrong with the phone. I get nowhere. I recommend she goes to the apple store to get it looked at. I mean, if I thought my phone was going to overheat/blow up I'd want it seen to as soon as possible, that suggestion leads to hysterics. We finally get back on topic and I tell her firmly but kindly that the dates are in the email, she just needs to read it again. Cue the tears. I tell her the dates. She forgets. I repeat them, and then repeat them again. Eventually I shout them down the phone to her (I'm not proud of it) and then hang up.

When she's having a crisis and I'm 350+ miles away I feel so helpless and agitated at her resistance to doing anything that could help her. Even the things I could do to help, like organising an online shop to be delivered so she doesn't have to trawl round the shops get turned down. The disease has made her stubborn and given her the ability talk herself out of anything which could make life easier.

It's the fear in her voice and the uncertainty that scares me the most. I don't want to turn into her as she is now. I don't know this person, but I need to look after her the best I can from hundreds of miles away. I feel guilty for not doing more and the guilt brings up all the old feelings stemming from lack of control. When things with her are going badly my mind is telling me to slip back into old habits which is where the real battle begins.

How do you cope when your parents need help with day to day tasks, hundreds of miles away? How do you deal with the stress?

Trapped

Living at home these past couple of months has been incredibly challenging, for different reasons than I anticipated. As well as Alzheimer's my mum has a macular hole, meaning that sometimes she can't see what's right in front of her face. 

Take someone with short term memory issues and add an inability to process visual information and you're left with an incredibly frustrating situation. Sometimes it's like watching a baby trying to put the shape in the wrong hole in one of those toys. The end result is that she is getting frustrated at not being able to complete simple tasks (fastening a seatbelt, plugging in phones, replying to messages) which leads to crying, and me being the bad guy for trying to help out.

At first getting yelled at daily really got to me. Now I understand that it isn't me being yelled at, she's just frustrated that she can't express herself fully and I'm there. Sometimes I leave her to struggle on with a task, other times I help. Neither is the correct answer and so then I'm left frustrated that I can't help out without it being perceived as insulting.

In a couple of weeks she's supposed to be having the macular hole fixed, which could be transformative. It could help give her some confidence back and might stop her from feeling so helpless most of the time. One of the things she is excited about it being able to drive again, although this is not guaranteed. I can't say this to her but I don't think she should be getting back on the roads, when she can't navigate from fridge to cooker without a detour to the dishwasher, cupboard and hallway. I'm worried about her safety. 

On top of this her stomach is causing her near constant discomfort and pain, yet most of the time she refuses anti-acids. She is absolutely terrified that if she tells the doctor he will take her off the medication (which she doesn't think is working anyway) and then she will decline. I wish I could go with her to the doctor's to discuss what she is feeling but work gets in the way. 

Is it possible to do it all? How do parents with small children cope? Do they feel trapped all the time, constantly inadequate, guilty and frustrated? Does feeling like this make me a bad person?

Self perception

Since I was about 16 I've struggled to accept how I looked, and have had a very negative body image.

Over the years I abused my body trying to gain some control and make myself happy with what I saw in the mirror. It took seeing the effects of not eating on one of my friends to snap me out of that stage, but I can still remember the thrill of control and always being on the edge.

These days I weigh about the same as I did when I wasn't eating properly, I train almost daily after discovering rowing at university and building up some fitness and I eat well. I'm running a half marathon to fundraiser for an Alzheimer's charity in a couple of weeks and overall I'd objectively say I'm in pretty good shape.

So why do I still feel like I'm this girl? 

If you asked most people who know me now they wouldn't recognise me. I wish I didn't recognise me. 

What strikes me from looking at the old photos of myself before the obsessing began is how happy I look in all of them. I look comfortable in myself and in my questionable fashion sense. 

In a few days I will have to start taking care of my mum whilst working full time. The stress of juggling those makes me want to bury my head in the sand and deny myself food to gain some control. But I'm an adult now. I can't just use hunger to hide from my problems. I need to be the responsible adult and plan both of our lives over the next few months, and gets longer term.

How do you begin to advertise for someone to help with the complex needs of an early onset Alzheimer's patient, especially one as intelligent as my mother. How much help is actually required? How do you ensure you don't get woken up in the morning after a nightshift? How do you juggle it all without going insane?

Travelling with someone with Alzheimer's

The worst thing about travelling with someone with Alzheimer's is not the disease, it's the fact you have to be with them at all times. No more, if you want to do this and I don't, we'll split up and meet at a certain point at a given time. No, you have to watch them, even in a shop not letting them out of your site. It's exhausting. 

As are the constant questions of what are we doing now, where are we going, and the running commentary of impossible memories.

Meal times become a battle, much like with a 2 year old, what do they want to eat and how much? You find yourself monitoring intake and gently encouraging them to have a couple of forks more. This is no longer a mother daughter relationship. The roles are reversed and now it's the parent that needs monitored and not let out of sight. It's exhausting.

Then there's the medication. Never go anywhere with someone on new medication, especially if a possible side effect is stomach upsets. That, combined with unfamiliar food leads to days of burping, complaining, asking for one specific thing and being generally pathetic. Until you want to scream and shout. Of course you understand, but it's still maddening. It does stop the constant monologue about how they've been here and done all the same things before right down to getting indigestion and going to the same pharmacist. I don't know which is better in all honesty.

So instead of relishing a little bit of quiet time alone at breakfast you sit worrying about them and preparing for the stream of abuse about how selfish, cruel, uncaring you are for not meeting their demands. And worrying that they'll get stressed, leave the room to try and find you and get lost in the process. No rest for the wicked.

The key to minimising tears and tantrums is to lower your voice. Like successful politicians and people in power, a deeper voice conveys authority, doesn't give the impression of being irritated and keeps them calm. A blessing when you normally can't go 5 minutes without tears, or getting called a horrible, selfish person.  You have to let those words wash over you and not take them to heart. Not reacting to the insults or tears is key, otherwise the episodes last longer. Listen to every impossible story, but don't agree or disagree, just let them know you're listening, and be prepared to hear the same story again with different people and set in a different time. 

Falling Apart

Nobody prepares you for what it's like when your parents get sick. I don't consider myself to be particularly reliant on my mum, but the thought that in the near future I won't just be able to ring her up and ask for advice is hard. Or that she won't be there at big life events.

Of course we never know how things are going to progress and you have to make the most of every minute, but just because they're ill doesn't mean they don't still wind you up. And that's hard, because how can you get mad at someone who might not be the same for much longer? It's incredibly frustrating, because there has to be a shift in your relationship with them. No longer do I phone just for a chat, no, it's a catch up, checking for progress with doctors, listening for signs of deterioration, a struggle not to say "Yes you told me this already and the last time we spoke" when you hear the same story for the 10th time and a battle to stay patient when you have to repeat information over and over.

What's harder to manage are the expectations of others. My boyfriend asks me regularly if I've spoken to my mum that day. Usually the answer is no. Over the past few years it's maybe a once a week occurrence  and that was good for us. Now it's maybe 2 or 3 times a week, but I'm made to feel guilty that it isn't every day when he asks. But you know what, it's too damn hard. Maybe I'm not a nice person, but I like to think I'm pretty caring and not a worse daughter for not calling daily. I think my mum would feel guilty if I did, like she was monopolising my time, or being a burden, something that she never wants to be. So I'm going to stick to my routine and anyone who tries to make me feel guilty about it can just keep their mouth shut and leave me alone. It's hard enough managing my own guilt for not visiting more, not chatting longer, not really wanting to go home but feeling obliged to, without having additional guilt piled on by others.

In the next couple of months my mum's old boss is throwing her a party, basically a retirement/thank you party. I can't imagine how stressed she's going to be on that day. Yes the people will be familiar, but revisiting the problem over and over will be exhausting, the expectation of people for her to still be 'ok' because they know there's a problem but don't realise the extent of it. And then there's the little things: what to wear, remembering which day it is, the need for reassurance that the jacket matches the outfit and that her hair isn't too 'witchy'. Only someone close to her can help to navigate these small problems which could turn what should be a lovely day into a potential day of panic. Obviously I've offered to go up to escort her, but even still it's going to be tough for both of us.

I think the message today is that other people need to stop piling their expectations on us and just let us muddle through in our own weird and wonderful way. Life's hard enough and too short as it is without feeling bad for only doing your best.

Perceptions

When you think of someone with Alzheimer's you think of someone older, white haired and a little bit frail. The disease doesn't show itself physically, so when you are faced with a 50 year old who is struggling, panicing in shops and is afraid to go somewhere new it can be difficult to deal with and explain.

In this society if we see someone who is old struggling to remember and having difficulties with simple tasks we tend to give them time and offer to help. Is it the same with someone showing the same symptoms but much younger? I'm not so sure. I find it hard to leave my mum to just do things at her own pace, I feel like if I help then it'll be appreciated. But it isn't. She finds it frustrating not being able to do things on her own, or having things done for her, in the same way those around her find it tough to watch her struggle or get frustrated when meal prep lasts over 2 hours instead of 2 minutes.

Patience is a virtue I'm having to learn. On the phone I let her talk and take the conversation where she wants, I don't press for details on the progress of the disease or ask for details if things are unclear. If I've heard the story before I don't mention it. In person patience for me has meant sitting back and doing nothing. Disrupting her routines and processes upsets her, so lazy and uncaring as it appears, sometimes the best thing I can do to help is to do nothing at all. Anything that stops the onset of crying is good.

As time passes I'm sure the kind of help required will change. And we'll have to deal with that when it comes. Will I be able to cope with watching her wither in front of me? I don't know, but I'll sure as hell do my best to be there in a way that works for us.