My mum has got early onset Alzheimers.
The first me and my dad noticed that something unusual was happening was about a year ago; little things were not right, mainly around her becoming easily confused about things that someone without a condition would not confuse, like not being able to process what time a bus departs a stop. There was then a further decline during November and December, a fairly sudden one, where further confusion occurred along with incidents which really started causing concern. I think the one incident that particularly affected me was when she sent me a text saying that she didn't know where she was and that she wished she was in her own home. Of course, she was at home at the time.
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| Another charity leading the way |
We haven't yet got to the stage where she is forgetting people close to her, but I fear that it is only a matter of time. The latter symptoms of Alzheimers are frightening, frankly, and I hope it takes as long as time allows before we have to see my mum deteriorate to these levels. At present, she's still the warm and friendly person she always has been, but with added haze and confusion. This horrible condition almost strips out all personality as it gets worse and so I want it to take as long as possible before this happens.
People always talk about Alzheimers and other dementias are a condition that 'progresses.' I'm sorry, this is too upbeat a term for me to get on board with.
My dad, of course, has to live with her all of the time. He sees it day in and day out and has had to suddenly learn how to live with a person who is changing and who cannot undertake many of the tasks she used to do. I admire how he is handling it so far. My dad is not without flaws (we agree to disagree sort of knowingly on a lot of issues) and one of the biggest challenges is getting him to plan in advance. I've been doing a lot of research on Alzheimers since it started to look likely that my mum had that, by reading literature, talking to people who have had experience of family members with the condition and looking at the various charity websites and NHS support pages. My dad, on the other hand, has not and I'm concerned he is not helping the situation in some ways by, for example, taking every single job out of my mum's hands, even things that she can get wrong and it wouldn't matter, like feeding the garden birds. I've read that ensuring that people with Alzheimers are made to feel useful is very important.
That said, my dad is having to watch the woman he has loved for 32 years gradually change into someone unrecognisable and, moreover, watch it everyday. I can't imagine the emotional impact it is likely to be having.
My parents went to the doctors on 19 January and sadly it took until 10 March - last Friday - to get the first appointment with a specialist. People with experience of this will probably tell me that's normal, but it is frustrating. I am also acutely aware of the situation of our NHS but naturally you feel that your case (or your family's) is the most important of all. But at least progress (I use this term more accurately here) is being made it terms of obtaining support. The appointment on Friday was a memory test followed by a general discussion; the next stages involve a scan and another appointment with a more senior person. Then one can look to developing a 'care plan' which involves both the carers and the professionals, which sets out exactly what support my mum will get and in what form. This is where we need to get to.
One of my many concerns in terms of being the best carer I can be is that there are only two people who can look after my mum during this time. Me and my dad. You might ask, what about wider family? Well, I'm an only child for a start and there are four - yes, count them, four - people on my mum's side of the family. Two are disabled (one has William's Syndrome and the other was starved of oxygen at birth and needs full time care), one is the full time carer for the latter and hasn't spoken to my mum for ten years (my Aunt) and one is my nan who is 83 and is not in a physical condition to contribute. Plus, they all live 65 miles away. Yes, there are also friends, but I believe that they should only be there for some emotional support in terms of the carer chatting things through with them from time to time. Fortunately both me and my dad have some good friends to lean on, which will still be invaluable.
But aside from that, it's just us. How on earth am I supposed to transform myself into a carer? How do I need to behave? How can I help my mum the most? What should I say? Do? What should I do with my mum when I see her? All questions racing around my head like a F1 circuit. Frequent blog viewers will know that I am not even 30 yet, so I am quite young in experiencing a parent become a victim of this condition. Most people are in their 40s and 50s from what I understand, which makes sense. But my mum is only 67, so she's quite early getting the condition and she had me when she was quite late, i.e. 37, hence why we are where we are. How can I be qualified to do this job?
At the moment, I am spending a few hours every weekend at my parents' house with my mum, so my dad can leave her and know she'll be okay. I usually go for a walk with her, but just me being around seems to help. I haven't had to dramatically change the way I am with her, although I have been involving her in more things where possible and trying to keep her occupied. But this is doable; I am scared of what will happen when the mid-later stage symptoms start to kick in. Scared of seeing my mum go through her horrible changes. Scared of whether I am going to support her in the right way. Scared of how I might deal with it.
For of course, as is the purpose of maintaining this blog for the past nearly five years, you may have noticed that I grew up with anxiety. I am in so much better a place now, but I know that huge emotional changes could trigger something. Anxiety doesn't leave, it just lurks hidden in a box in a dark corner, waiting for a moment to materialise again. Fortunately, my box has been locked for the past couple of years or so, but it's still there and the key remains in tact and I don't necessarily have full control over when it's reopened. The problem I have is this - the emotional and logistical impact of my mum changing because of Alzheimers is going to change my life. This heightens the risk of anxiety, minimising the likelihood of me being a good carer. Knowing this is a possibility puts more pressure on me in the first place, further maximising the likelihood of this scenario playing out. If I become an anxious mess again, I will not be able to adequately support my mum. The thoughts of both becoming an anxious mess again and not being able to support my mum frightens me. So the question is, how do I keep it together?
Then, don't forget, there is being strong for my dad, who will still have to bear the brunt of all this and who will need me to help him emotionally and logistically. So it's not just my mum who is at stake here.
This brings me back to the point I made earlier about planning. Knowing all of the above is, in some ways, helpful. I am aware of what may happen. Without having had anxiety, I perhaps wouldn't be aware and, therefore, able to prepare. So I have to use this knowledge to my advantage and do whatever I need to do so that I don't become an anxious mess again and, most importantly, so that I can be the best person I can be for my parents.
One example is ensuring that I still have some time in my life to myself. I am likely to be required to support my mum more and more and if it gets to the point where all I'm doing in my life is working full-time and supporting my mum, this will just increase the likelihood of me becoming anxious. So I am fully prepared that in however many months/years time, I will probably have to drop my working hours.
Ultimately, as selfish as this may sound, I also want to live some of my life in my 30s; I spent most of my teens and 20s suffering from anxiety and being unable to do the things that people in my social bracket generally do during those years (the so-called "best years of your life") so I was hoping that my 30s at least make me able to do more of these things, like my recent trip to Edinburgh and forthcoming trip to Ireland. The implications of forming relationships with all this is obviously a negative one, but this is not important anymore. Fitting my life around what is needed to support my mum is all that matters.
But I still have to look after myself. Otherwise I'm useless and, probably overall, a hindrance. So this next however-many months/years will be a constant battle of learning, adapting and handling stuff. Something that, actually, I have gained many years' experience of thanks to anxiety - so my anxious past may just help me, if I get it right.
Ultimately, though, it is one of those situations where adapting is the only way. I love my mum and I want to do the best for her, whatever it takes. So analysing the 'what ifs' is just getting in the way.
This is a new challenge in my life and one that I am just grateful I can even consider being able to handle.
Best wishes,
Al
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