It wasn't all that long ago that my mum was diagnosed with Alzheimer's disease at the age of 67. I blogged about this when it first came to light that something was clearly wrong and the official diagnosis was provided in May. Since then, it has been a case of learning to adapt and react, with opportunities to be proactive rather infrequent.
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| You'll be delighted to know that there are equivalent images for dementia like the 'head in hands' images used to depict depression |
What I have learnt so far has been very, very important. I have not been with my parents when they have had appointments with specialists (despite me wanting to be) so I have never been given any advice directly about what I should do with regards to this individual case. Everything I have learnt I've had to learn for myself and, often, then translate this across to my dad. It's more important he gets the benefit of what I've learnt than me, given he is with my mum seven days a week.
All of this, of course, should be considered with the backdrop of anxiety - the whole purpose of this website. Despite my anxiety now generally being under control, its legacy lives on and it also remains under the surface, lingering, waiting for something to bring it to the top. Something like coping with the pressure of helping a family member with Alzheimer's. I have kept it under control for now albeit with a few hairy moments; my concern will be later on down the line when things deteriorate further.
So what have I learnt so far?
1) It takes no prisoners
The main problem that we have faced so far is that my mum has gone through phases where she doesn't really know who my dad is. When she talks to me about events that have happened during the week, she uses the term 'they' when describing who she was with; when they have disagreed about something, my mum has said things like 'I'm not sure who he is, but we obviously don't like one another.' She also gets confused about things like how she will get somewhere, even though my dad has driven her there for years and years. The most striking example was when she asked me who helped me with something, and I said 'my dad' and she asked 'by 'your dad,' who do you mean?' And yet, she seems to be able to tolerate his presence in the house all the time - she's not frightened by him and doesn't directly question who he is. It is utterly bizarre - but then, that's Alzheimer's for you. Unfortunately, it is unforgiving. It is often the closest person(s) to the person with the condition that suffer the most, not just because they are looking after them and dealing with their needs, but also because they are the people that get muddled up in the person with dementia's mind before anyone else. My mum has seemed to understand that my dad is there for a reason, but doesn't seem to realise that he's my dad. My concern is that this is going to get worse and worse, to a point where she won't want to be in his presence at all. However, some chinks of light have recently appeared (see concluding paragraphs).
2) Photos are incredibly powerful
I'd read that showing a person with dementia photographs of the past can be very powerful in stirring up important memories. I told my dad this and pleasingly he took my advice and went through some of the myriad of old photo albums that my parents have. Voila, the following weekend my mum actually called my dad 'Dave' (his name, thankfully) on several occasions and referred to him as my father a couple of times too. This, I can only assume, was all due to the fact that he showed her photos of both of them together years ago, and with me as a baby. I have coined these our secret weapon for future use. It may seem obvious to show photos, but I probably wouldn't have considered it had it not been for...
3) Read the literature
There is a lorry load of literature available for carers on dementia and techniques to use to help them and yourself. The photos idea was one of the scores of ideas that I suggested. Most of this literature comes from the incredibly helpful guidance from the Alzheimer's Society who do a wonderful job at providing support. They have written guidance on just about everything and these, along with guidance from other websites such as NHS Choices, has given me so much information to help. Almost too much, actually, and as such I produced a two-side document summary of all of the information that is most relevant to our situation which I intend on using as my go-to guide when I need help with anything.
4) Medication helps
About 3-4 weeks ago, the specialist increased the strength of medication my mum was on (don't ask me what it was called because I can't remember!). Now, any regular readers of my blog will know that I am largely against medication, especially long-term, for many mental health conditions and medication should only be taken when in conjunction with therapy and/or for a short time. But Alzheimer's and wider dementia related illnesses, to me, are different 'sorts' of mental health conditions to say anxiety or depression, so my opinion on medication to help alleviate the symptoms was totally open before all of this started. My opinion now is that it can certainly help, if nothing else to make the person less anxious and more rational. The recent (I presume) short-term improvement in my mum was certainly in part due to the photos (see above) but also coincided with the increase of the medication strength. She seems a lot brighter and generally a bit less confused that she had been for several weeks if not months prior. So I hope this continues for a while yet! The literature indeed states that medication generally 'temporarily alleviates symptoms' which is what it has done - the burning question is, how long for?
5) Music matters
One of my main challenges when I see my mum on a weekend is how to keep her occupied. Walking is a no-brainer (see below) and when it's footy season that's another good one - my mum, fortunately enough for me, likes watching football. But what else? What do I fill the gaps up with? One answer is music. She can remember lyrics to songs almost verbatim in some cases and knows a lot of tracks from the 60s, 70s and 80s (and even 00s dance tracks after my brainwashing during this era...). So on a few occasions now we have basically sat together and I have either put on one of the many music channels provided by Sky, or put on a playlist of tracks that I have put together from those eras. I bought a load of compilation albums from Amazon and i-Tunes and put them onto a memory stick which I now keep with me when I see her in case music seems to be a good option. The result is she enjoys it, can sing along and we can have a laugh about it. Simple but effective.
6) Physical activity is fundamental
Much of the literature I have read states clearly that exercising can help people with dementia (and an also help to prevent it in the first place). Luckily, my mum has always enjoyed walking and I always ensure when I see her that we go for a walk. We're also lucky in that my parents live close to some great rural walks through fields, onto Cannock Chase and along canal towpaths, so I always make sure we do one of these when I see her. She enjoys it, it gets her fresh air and exercise and gives me exercise too. It's also a good opportunity for her to chat about things to someone she hasn't seen for a week, i.e. me.
7) Don't do everything for her
I hate ironing. The good news is that my mum doesn't and she is much faster than me too. So when I visit, I take shirts that I need ironing with me. No, this is not because I'm lazy*, but because it is important that a person with dementia feels useful and needed. Her doing the ironing for me gives her a purpose and, moreover, it saves me doing a task that I hate! This is one example of many. Another example is that my old room needs clearing out at my parents house and when I do this I will get my mum to help me. Not because I have to, but because she'll find herself useful. I've been trying to tell my dad about this and I think he's finally getting the idea!
*I am also lazy when it comes to ironing...
8) Be the same person
Talking to my mum like I always have has, at times, been difficult. Trying not to finish sentences or remember things for her or put words in her mouth. Trying not to do things for her because it's easier (see 7). But I have learnt that it is hugely important to be the same person around her. React in the same way. Do the same things and laugh at the same things. Talk about the same things. Don't treat her with kid gloves. I thoroughly appreciate that there will come a time where this will become increasingly difficult as the condition 'progresses' (hate using such a positive term to describe it), but whilst she can still do things and talk about things, I need to make sure I am the same person I always have been - otherwise she'll know something isn't quite right.
9) Look after yourself
The realities of taking care of someone with Alzheimer's has started, but both me and my dad have only just scratched the surface so far. It WILL get far harder both emotionally and physically as she deteriorates, whenever that happens significantly. The later stages of Alzheimer's are horrible to read about and I can only imagine what they are like to see them in reality - but that will happen, eventually. So it's important that me and especially my dad look after ourselves as much as possible and don't neglect our own needs. We can do some of this now, even if it doesn't really need to be done yet, in advance and prepare to what may happen a few months or years down the line. For me, this may be reducing my working hours to free up more time to help my parents but also more time to live my own life; the latter is vital, of course, not least for me so that I don't become an anxious mess and become useless to everyone.
To finish on some good news. After going through a difficult couple of months where my mum was really confused and where the biggest problem was her not knowing who my dad was, we have come out of the other side of this (thanks to many of the interventions above, especially medication) and her case worker (if that's adequate terminology) has said she shouldn't need to see her now for a year, so that's great news. She obviously has difficult days and goes through challenging spells, but if she can remain at this level for as long as possible that would be ideal - she still has a reasonable quality of life at the moment, as indeed does my dad. They can still enjoy things and appreciate things.
But I suppose the main thing I've learnt is that it is unforgiving. It can happen to anyone and is increasingly affecting more people as our population gets older. As always, our services aren't prepared to cope with this change. Moreover, there are so many suggestions for things that one can do to try and minimise the dementia risk - what do you believe? Do any of them help? My mum didn't smoke, she always gets plenty of exercise and did a crossword everyday, so what gives her being diagnosed at 67?
The good news is that thanks yet again to our wonderful charities, we can get support for every step of our journey. A journey which, for us, will inevitably get harder both emotionally and practically - but one that I am ready to tackle. As, after all, I would do anything to support my mum.
Best wishes,
Al
PS - Four weeks until I go to Canada... what the hell? Blogs to come (you'll be delighted to know...)
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