A few of you may have noticed my reach out tweets around the Christmas period. It was a difficult time; gone are the days when going to my parents' house for a few days over the festive period was one of the most relaxing times of the year. The period 22-27 December this year was very hard, because of my mum's worsening health.
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I could answer the question posed in the title of this blog simply by saying 'it's a horrible, despicable disease that can savage and ruin lives.' It wouldn't be far off the mark. But then that isn't particularly insightful and everyone already knows that.
I will explain the situation as it stands with us at the moment, which is underpinned by the following timeline:
- Spring 2016 - noticed things with my mum weren't quite right
- December 2016 - first time it was clear Alzheimer's was likely
- January 2017 - had first appointment with GP and various referrals
- May 2017 - Alzheimer's disease diagnosed, prescribed medication
- May-Sept 2017 - significant improvement in her condition
- Sept 2017-present - significant decline in her condition
So this is a particular problem when my mum has quite a lot of hostility towards my dad. She doesn't really know him as her husband or my father and often speaks about him as 'this bloke' or 'they' in many cases - it's often as though the person she went for a walk with on day one is different to the person she ate dinner with on day two - even though they are both my dad. She is also now feeling somewhat stifled - she told me last weekend that she isn't happy that everything is decided for her and sometimes she needs her own space. The problem is, she can't do general tasks that easily now and things have to be done for her. It's so hard listening to this, especially when she feels no love for her husband because she doesn't recognise him as him.
When I stayed there for four nights around Christmas, sometimes - but not all the time - my mum looked at me in what, for me, was a frightening way when my dad walked into the room. A look that was like 'who is this person that's coming in as if he owns the place.'
She also had - and has been having several of, according to my dad - a particularly bad spell on Christmas night. Basically she didn't know where she was and kept saying she'd be fine 'when she got home.' Of course, she was already home. Apparently this has happened a few times and she gets totally and utterly confused with pretty much everything. It first happened about a year ago, but then went away until recently. Usually what happens when she feels like this is my dad takes her to bed; he has to show her where her room is.
It must be horrible for both of them to have to deal with episodes like this day in, day out and clearly the situation is not sustainable.
I have been (trying to be) the voice of reason since my mum's diagnosis. I made the suggestion a couple of months ago when it was clear she was declining that my dad should make another appointment with her support worker. I thought I'd have to push him to do this, but he did it after my suggesting it only once, which I was pleased about. Said appointment is on 16th of this month and it cannot come soon enough.
At this appointment, I expect at least an insinuation that the unsustainable situation I mention above is going to be seriously looked at, with reasonably immediate effect, probably in the form of a care plan. I am probably being very naive - we all know what pressure the NHS is under - but we should file for the equivalent of extenuating circumstances. If my mum was lucid about my dad, yes my dad would still have to do a lot of work but it would be a lot easier when the person he's doing it for is open and comfortable with you. If my mum was uncomfortable and unsure about my dad but I had, for example, three siblings who could provide extra support, again that may be manageable. But both of these situations combined is already not working and it may not be long before it reaches boiling point - one of two possibilities really scare me:
1) My dad breaks down unable to cope
2) My mum doesn't want to be around him and starts wandering off or getting aggressive etc.
Historically, my parents have been 99% reactive and 1% proactive in life generally and in this case would only take action when one or both of these things happened. My role, again, is to provide that proactivity, firstly by encouraging my dad to make the appointment and secondly to make it explicit at the appointment about our situation. We should be prioritised for professional, external support whatever that looks like, given our circumstances. And I don't think that is being naive.
I bear the brunt of my mum's confusion and frustration - she still knows exactly who I am which is great obviously but it makes for a very hard few hours when I'm with her. I also feel I should do more, but ultimately I think the impact of that would be on my working hours which I think I would have to reduce if this was to happen. Being a single homeowner is harder work than I ever imagined and I frankly don't believe I should be reducing my social hours, given that I spent most of life prior to the past few years unable to live a proper social life due to the grip of anxiety.
And this is, of course, the other consideration. This blog website and everything contained within it tells you my story of anxiety from age 11, and I noticed on the days I stayed with my parents over Christmas the good old familiar feelings of anxiety creep back in. This was mainly in the form of struggling to eat properly which is often the first thing to be affected, and breathing awkwardly. Luckily, I managed to control it thanks to my CBT experience, but nevertheless it showed that much longer at my parents may have been more difficult to deal with. Being immersed in the difficulty of the whole situation, combined with constant attempt to keep my mum occupied and happy over these few days resulted in anxiety breaking free. And that is why it is probably best that I don't increase my hours of support that I do each week, because the affect it could have on my life could a) set my personal development back years (which my parents wouldn't want either of course) and b) make it so I couldn't support my parents at all, because I was too anxious.
There is not an hour that goes by where I don't feel guilty about not doing more to support my parents, trust me.
Overall, I'm not exactly sure what the next steps will be for us, but whatever they are they have to be taken soon, because this situation is like a pressure cooker at the moment.
In part one of this blog, I listed nine things that I learnt about dementia and supporting someone with the condition. I have listed these again below and given you additional commentary on my perspective five months on.
1) It takes no prisoners - yes, this is still more than true!
2) Photos are incredibly powerful - hmm, I'd reduce the tone of this down slightly. The effect of my dad showing my mum photos wore off quite quickly. I've encouraged my dad to try again and to put a few photos in frames as permanent reminders round the house. Time will tell, but I think I over-egged the impact of this one somewhat.
3) Read the literature - yes, definitely. I have recently lifted a fair whack from the Alzheimer's Society's 'Carers - looking after yourself' publication for my dad which has helped a lot, especially with what we need to press for at this forthcoming appointment in terms of support we need. Again - charities to the rescue!
4) Medication helps - Short-term, yes, a lot - long-term, less so. Her improvement over the summer must at least in part be attributed to medication, but the effects of it seems to already be wearing off and I don't think there is any more or stronger medication that can be used. My mum has also been experiencing 'sundowning' too, which in short means that her symptoms are generally worse in the evening. This is, in part, due to the effects of the medication (which she takes just before bedtime) wearing off.
5) Music matters - yes it does. She still remembers, very vividly in many cases, songs especially from the 70s and 80s and I often fill in gaps by putting music on that I know she likes. Luckily my parents have Sky and so have various dedicated music channels, and I bought loads of compilations albums last year. It's a good gap filler and can stir useful memories.
6) Physical activity is fundamental - Still very true. The main activity I do when I'm with my mum is go for a walk. She enjoys it and it is very good for her too. She usually goes for at least one good walk a day. She's not into other types of physical activity but that doesn't matter too much.
7) Don't do everything for her - I think this is where my dad has not been quite so good. He is doing a brilliant job in difficult circumstances, but I believe he took too many tasks off her too early. And he also makes a point of it if she hasn't done something quite right - he's a perfectionist, and changing this will take a cognitive behavioural therapist many sessions of work. The point is still an important one and I try and leave her to do things when I'm with her that she can still do, like wash up and my ironing (see previous blog!)
8) Be the same person - I am still doing this. I don't know if this will be possible, or whether it is the best thing in the long-term now though. How I am with my mum and how I should react and what I should say when she's struggling are things I need to get some expert insight on I feel, because I am increasingly feeling out of my depth. Should I tell her that by 'they' she means my dad, for example? Or do I just carry on 'going with it' and being her son exactly as I was before the disease took hold? I'm doing the latter at the moment.
9) Look after yourself - see rest of blog before this list. I believe, especially for my dad, that this will only be able to happen if we get the right support we need. My dad still goes and plays his golf about three times a week which is hugely important and we need to be in a position where this can continue.
I'd add three new ones:
10) Hobbies are important. I mean this twofold: 1) linking with point 7 above, whilst someone with dementia can still participate in their hobbies, keep doing them. The problem we also have is that my mum never really had what you might call hobbies, walking aside. When she retired in 1987 (when she gave birth to me), her sole role was to look after me. Then when I grew up and especially when I moved out of home, I'd have hoped she'd have picked up more hobbies or charity work, but never did. She spent most of her days walking, going to town and watching TV to be honest. This makes it harder to keep her occupied when I'm with her, especially now she's becoming more restless.
11) Your life will change. Of that there is no question. Don't expect to be able to do the same things you've always done, especially if you're the primary carer.
12) You learn a lot about yourself as a family member. And for me, I mean this also in terms of how I will apply the management of anxiety so that I can be useful support for my mum. I have much more to learn yet, me thinks.
Overall, my biggest concern is that my mum's support worker 'signed her off' in the summer for a year, which I rightly or wrongly read as that she was unlikely to decline much within that period of time. Sadly that has not happened and here we are barely six months later in a much worse position.
This is a huge challenge. One that I did not expect or sign up for. But one that is so much worse for my mum and my dad than it is for me. So I need to strand strong. I need to show that I will not wither and wilt under the pressure that this situation brings about. I have no choice but to tell anxiety to go and do one, but for this to be easier, we need to implement external support as I've been talking about.
It is, yet again and unfortunately, another example of not making the most of things when they are good. Neither of my parents have really been ill in the past and you assume that it won't happen to you. Like everything, this situation reinforced what I guess we all know yet don't act upon - do not take the good health of those closest to you for granted.
Best wishes,
Al
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