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?
Saturday, 2 November 2013
Wednesday, 11 September 2013
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?
Monday, 2 September 2013
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.
Saturday, 11 May 2013
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.
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.
Saturday, 6 April 2013
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.
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.
Saturday, 30 March 2013
An Introduction
About 7 months ago I found out that my Mum potentially had Alzheimer's And that for the previous month she'd been off work and in and out of doctors appointments, but had decided not to tell me. Getting bad news is always devastating, but getting it when you've moved to a new place and have no friends there to support you it can make you feel quite isolated.
Over the next 7 months she went through more tests, referrals and various other appointments until it was officially diagnosed by a specialist at UCL in the middle of March. My Mum is 53.
You always think your parents will be there for the crucial moments in your life - the celebrations, the hard times. You think they will be there to offer support, advice and wisdom, of course you might not take it or agree with it, but its nice to know it's there. But now it looks like that isn't going to be the case, and that's hard to hear. Especially as with Alzheimer's you can touch and see the person you know and love, but they won't be there. They'll have faded in front of you and lost themselves. Or be upset and angry and frustrated and unable to function.
Today I read a piece in the Times about a girl whose father had been diagnosed and within 2 years he had faded terribly. And that scared me. Her stories about how he couldn't look after himself and was in a home upset me, as I know one day it might well get to that. Maybe. Mum has always been clear and had a living will about how she wants to live her life. At some predetermined point, she wants to be able to just stop, not be put through the indignity of needing someone else to "wipe her bum". This doesn't come as a surprise, she's seen her mother and grandmother live with this disease, she knows the gruesome truth. Growing up she always joked about cyanide pills in her back teeth, saying that when the time came she'd probably be too gaga to be able to bite down. Knowing that it's what she wants doesn't make it easier to think about though, even if I do agree with the idea.
When that time comes I hope that this country has come to its senses so that we don't have to be afraid.
Right now I'm afraid that this is my future. And here is where I'm going to try and process some of the stuff that is going through my head as my family goes along this journey because it's not always easy to talk about.
Over the next 7 months she went through more tests, referrals and various other appointments until it was officially diagnosed by a specialist at UCL in the middle of March. My Mum is 53.
You always think your parents will be there for the crucial moments in your life - the celebrations, the hard times. You think they will be there to offer support, advice and wisdom, of course you might not take it or agree with it, but its nice to know it's there. But now it looks like that isn't going to be the case, and that's hard to hear. Especially as with Alzheimer's you can touch and see the person you know and love, but they won't be there. They'll have faded in front of you and lost themselves. Or be upset and angry and frustrated and unable to function.
Today I read a piece in the Times about a girl whose father had been diagnosed and within 2 years he had faded terribly. And that scared me. Her stories about how he couldn't look after himself and was in a home upset me, as I know one day it might well get to that. Maybe. Mum has always been clear and had a living will about how she wants to live her life. At some predetermined point, she wants to be able to just stop, not be put through the indignity of needing someone else to "wipe her bum". This doesn't come as a surprise, she's seen her mother and grandmother live with this disease, she knows the gruesome truth. Growing up she always joked about cyanide pills in her back teeth, saying that when the time came she'd probably be too gaga to be able to bite down. Knowing that it's what she wants doesn't make it easier to think about though, even if I do agree with the idea.
When that time comes I hope that this country has come to its senses so that we don't have to be afraid.
Right now I'm afraid that this is my future. And here is where I'm going to try and process some of the stuff that is going through my head as my family goes along this journey because it's not always easy to talk about.
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