Dear Readers, last week I reported that my Dad had been in hospital for over a fortnight while I was on holiday. This week I rushed down to Milborne St Andrew, and Dad was at home.
The good news is that his ‘chest infection’ (actually pneumonia) is much better.
The bad news is that Dad isn’t really clear who anyone is, can’t find his way around the house, and thinks that his home is a new place that closely resembles where he used to live.
Sample conversation:
Dad: ‘That tree looks exactly the same as the one that was outside the old house’.
Mum: ‘What old house?’
Dad: silence
Mum: ‘This is the house we’ve lived in for 16 years, love. It’s the same tree’.
Dad: ‘If you say so’.
We call out the GP, who does a memory test on Dad. Dad does much better than we expect, but still badly enough to be referred to the Memory Clinic for a diagnosis. The doctor thinks that it’s not ‘classic’ dementia but a form of confusion brought on by the effect of not getting enough oxygen to the brain over a long period of time (because of the COPD) exacerbated by his recent pneumonia. COPD is the gift that just keeps on giving, and one lesser known effect is brain damage.
The doctor doesn’t think it’s going to get any better. The unstated conclusion that I’ve come to is that it will probably get worse. There might be peaks and troughs, and Dad might gradually come to feel more confident and relaxed in his own surroundings, so I’m not catastrophising, but it’s clear that things will need to change.
The doctor thinks that the options are residential care or a live-in carer. Mum doesn’t want either, but isn’t physically strong enough to cope with Dad if he needs help getting dressed or going to the toilet. Mum and Dad have always said that they want to be together in their own home if at all possible. So we’re going to investigate the live-in carer option. We are lucky that, as a family, we can scrape together the resources to even start to consider this.
I spend ten minutes in the garden, watching the bees riding the lavender as if each sprig was a bucking bronco.
We are lucky that Dad is such a stoical man – he takes each explanation of what’s going on with a surprised and suspicious scepticism, but is happy to sit in his recliner and take things as they come. He is eating next to nothing, but can be tempted with creme caramel or anything with custard. There are long periods in the day when Mum and Dad are both snoozing peacefully away and I can get on with cooking and organising, or sitting in the garden with my camera. So often nature comes to the rescue. I am watching the bees and butterflies on the buddleia when it occurs to me that one of these things is not like the others.
Hoverfly, possibly Eristalis pertinax
I think that this might be a drone fly, a type of hoverfly that looks superficially like a honeybee and probably gets some protection as a result. The eyes give it away, though – that line between them is indicative of a fly, not a bee. And for just a few minutes I’m immersed in something that isn’t care rotas or sorting out medication.
And then there’s a call from the living room and it’s back to that other real world, the one where people I love get sick and confused and cantankerous and infuriating.
I am stressed beyond anything I’ve known previously – I feel myself floating above some situations as if it’s not me at all. The first time I actually spoke the ‘Dementia’ word out loud I ended up crying all over the shop assistant in my local greengrocer. And yet, I also feel my heart opening. As I left on Friday I looked at Dad, with his hair all over the place like Sid Vicious, and felt such an overwhelming tenderness for him that all I could do was kiss him on the top of his head and tell him how much I loved him.
‘Love you n’all’ he said.
And I know that, whatever happens, he always will.
You are very brave sharing all this, but they say a problem shared is a problem halved. I went through a similar phase with my dad, who was usually and thankfully only confused while he had an infection. (At one point he was convinced the whole ward had been to France and asked the nurse to explain to my sister that it was definitely true). On coming home, (he eventually had 2 carers coming 4 times per day) he was prescribed oxygen and he used that for most of the day. I’m not suggesting that this may be the answer, but I hope he does improve so that you can share some more happy moments to remember.
I think so many of us have been through something similar, and there is a wealth of knowledge and experience in this community that warms my heart….yes, both dad and mum become very confused when they have an infection, but it usually clears once the antibiotics have kicked in. Not this time, unfortunately (so far) but Dad is very resilient, so who knows what the next weeks will bring? My dad is not on oxygen yet, but I suspect that will be the next step. Thanks for sharing your dad’s story with us, Mike. My dad was convinced that the ward was overrun with nuns, and that there was a cat under the bed opposite. He was most annoyed when we couldn’t see it.
Oh, it’s so very hard, this coming to terms with frailty in our loved ones. Ultimately, it is your love for each other that will live on and you clearly share an infinite amount. xx
Yep. All I can really do is love them. Wise words…
I’m glad to hear your Dad is out of hospital but sorry that his challenges aren’t over. It’s good to be able to find solace in nature at these stressful times. I understand this isn’t dementia per se, but I recently did a short training course on dementia and one of the points that really stuck with me was that although it may affect memories, it doesn’t affect emotions, so that if something good happens, although the person may not remember what it was, they still have the benefit of that good emotion. This struck me in the way you left him with that emotion of love.
Yes, that’s really interesting Andrea – Dad still really enjoys his food, and sitting out in the garden, and other things too. I think it’s all about keeping him as happy as possible now. I got the book ‘Contented Dementia’ by Oliver James for a bit of light reading – do you know it?
I don’t, but I work as a librarian and one thing that has recently been launched nationally is a Reading Well dementia collection for libraries in the UK – they’re collections of books chosen by experts as the best on those particular subjects (there are also collections for mental health, long term conditions and ‘mood boosting’ reads) and in theory they should be available in all library authorities (not necessarily every branch), there are also ‘picture books’ that can be used with people with dementia to help trigger memories – you will be able to find the booklist on line by looking up ‘Reading Well’ and dementia.
So sorry to hear this Viv…it’s so hard when parents get old and frail and you are not close by to just pop in. My father lived down in Cornwall and we live in Worcestershire we ended up going down every couple of weeks to sort out some crisis or another, such a difficult time for you. Nature does provide much needed therapy…I used to go and look at the sea in Cornwall a lot!! Take care….
Thanks Anne….yes, I am getting very familiar with the train from Waterloo to Moreton! Fortunately, it’s a beautiful journey, through the New Forest and then down along the coast, so there is nearly always something to distract me…
We know that everyone that reads your blog is wishing you well and our hearts go out to you. Our father, before he passed was diagnosed with early onset Alzheimer’s, and you had to develop a very thick skin and sometimes walk away and take a deep breath, but the only times we remember are the good ones and where we used to have a good laugh. Once he sat with a rolling pin in front of him and said ‘do you know i’ve thought of an idea with this and it’s going to make us millions’, he never did tell us what it was, but it still makes us smile 😁 Hope dad settles with a carer and it takes a bit of pressure from you, keep enjoying nature it’s by far the best thing, take care x
Oh that story about the rolling pin did make me laugh, it sounds like my Dad telling the nurses that ‘my son has a lovely new car and it runs on soup’. You’re right, there will be deep breaths involved in the next few weeks/months/years, but lots of laughter and love too.
So sorry to hear about your Dad. My mum had COPD and the diagnosis was made after she told my brother one day that she could see the wallpaper was moving!
After a long spell in hospital she was fine but needed constant oxygen and died 15 months later. I miss her everyday.
So sorry, Veronica – I don’t think we ever really ‘get over’ the death of someone we love, we just carry on living, and gradually we get used to ‘the new normal’, although a scent or a piece of music or something we see in a shop window can catch us unawares. I shall try to treasure my remaining time with my parents and not spoil it by worrying myself sick. Thank youxxx
I am sorry that I can not say something to make it easier. When I had to deal with this sort of thing, I did not want to hear what anyone else had to say about it. It had a way of being trivializing, even though I knew that was not the intention.
Ah Tony, I know exactly what you mean, and nothing anyone can say can really make it easier. For me, it’s interesting to hear other people’s experiences, and this is a very supportive community which is lovely. But no one can really know what you’re going through, and for some people it’s easier to keep things to themselves and deal with the problem in their own way, and I completely understand that – in fact, before the blog that was probably my preferred way to deal with things.
I’m so sorry to read this. My heart goes out to you. My dad too spent the last year or so of his life convinced he had just been moved. Every time I visited he asked, ‘But how did you know where to find me?’ It is hard to see our loved ones decline. Your parents are lucky to have such a loving and attentive daughter as you. And we are all lucky to have bees, birds and the rest of nature to console and ground us. Life is wonderful, even if it sucks at times.
So true Sarah- and there are wonderful moments even in the darkest of times. Dad is still quite capable of enjoying many things, so it’s about making sure there are as many good experiences in his life as I can manage, for Mum’s sake too.
You made it home and your parents are fortunate to have such a loving daughter. It is hard to know there is little you can do. I am sure your presence is a comfort to them both. I am sending prayers with hugs as you all journey together through this!
Thinking of you. I hope you will have some peaceful time in your garden. x
Pingback: Bugwoman on Location – A Dilemma | Bug Woman – Adventures in London
Pingback: Wednesday Weed – Verbena Bonariensis | Bug Woman – Adventures in London