It’s a small world – The limitations of a Life-Limiting Condition

 

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Life-limiting conditions are so called because they tend to reduce the length of a lifetime, in other words, bringing about a relatively premature death.  However, in mum’s case and with many other chronic illnesses, additional limitations become evident as the disease progresses and ‘Life-limiting’ can mean something altogether different.  Mum’s world is definitely getting smaller over time and although this shrinkage is slow and sometimes barely perceptible, it is marked by different stages.  Some of these milestones are related to mobility and some to do with diminished engagement and interest.  Since the diagnosis the key stages of reduction and loss are as follows:

  • Stopping Driving (see Driving us mental)
  • Stopping Childcare and Babysitting (see Talking to the kids about dementia.)
  • No longer going to as many social events (although God knows my dad does his level best, when often it would be a far more enjoyable event if he went alone)
  • Stopping attending WI meetings (this is recent, but it is fair to say that her contribution to the great bastion of society that is the Women’s Institute had been limited from the start. I would have been very surprised to see her in a Calendar Girls scenario with Helen Mirren for example)
  • The loss of shopping – once the great love of her life and the focus for our Christmas girls’ weekends (see Dementia – the festive gift that keeps on giving.) this has now completely fallen by the wayside.  Even her best friend in the world, the lovely Marge Beverage (as my husband calls her because he can’t ever remember her proper name – he doesn’t have dementia by the way) who accompanied mum to the shops come rain or shine, through hell and high water, has conceded defeat.  She realises that mum no longer gets anything out of being dragged round the shopping centre – the ineffable beauty of consumerism is dead to her now.
  • Limited attendance at family events – of particular note, my Aunt’s funeral last month and my cousin’s wedding planned for later this year.

Alongside the specific stages there is a gradual withdrawal into oneself that is also evident.  Mum went through a phase of loving her ‘Singing for the brain’ music sessions on a Monday but now she no longer sings along and dad is increasingly unsure as to the benefit or purpose of continuing.  Even the television, the stalwart entertainer of old people everywhere, is of limited value.  When it is turned on, she doesn’t look at it (even Coronation Street – that tells you all you need to know).  If someone turns it off she no longer notices. The same goes for books, magazines, radio and photographs.  It often seems impossible to engage her interest in anything.  Her mobility is reducing week by week and it seems likely that she will soon be unable to get up and down stairs safely so will be limited to single storey living and essentially housebound.  We then are presumably a few months away from being bed-bound.

This is the happy nature of her condition and we need to be realistic and to plan.  But (and there is always a but, as you know) is there anything to be gained from this smaller scale of living?  Should we be continually pushing the boundaries of our existence and expanding our horizons or is there enjoyment to be found in the everyday mundanity of a narrower life (you can see where I’m going with this – my usual rhetorical questions that lead to an affirmative)… Yes.  I think there is .

I have talked before about how dad continued to push mum into activities, sometimes  against all better judgement (see How much fun is someone with dementia allowed to have?).  His reasoning was that we wouldn’t know whether mum was going to enjoy something unless she tried it and this reasoning was sound, even if it was acted on in a slightly kamikaze fashion (I am reminded of him teaching us to ride our bikes by just pushing us down a hill and letting go or teaching us to swim by throwing us in the pool – we were children who learnt quickly it’s fair to say).  A bit of gumption and a gung-ho attitude is all well and good but with dementia there is a need to constantly adapt the approach and dad has done this.  He has pulled back a little and I no longer worry that I might see mum strapped to a glider going over our house or sat on a motorbike hurtling at top speed towards a ring of fire.

But he hasn’t given up entirely.  Whereas three years ago I was questioning the health and safety aspects of mum on a waterslide, a more recent decision has involved whether mum would be able to get into a hot-tub whilst staying in Cheshire with THE BEST HOLIDAY COMPANY IN THE WORLD (as previously featured in this blog When will there be good news? Wait… there is some!).*  Mind for You Holidays (it’s not the catchiest but you can see what they’ve done there) had contacted dad after the booking to say that this particular holiday destination had a hot tub with a hoist and would mum like to try it?  Now, a hot tub with a hoist initially sounded like something one might find in an S+M club but I assumed, given the clientele, that a gimp mask and crotchless trousers would not be required in order to partake in the hoist action.  We guessed that mum was below the weight restriction and, after some consideration as to whether it was really worth the bother, dad said ‘Yes!  Hoist away!’ (I expect he didn’t actually say those words).  A few weeks later we were sent a photo from Cheshire of a beaming mother, in her swimsuit, holding a glass of fizz in a hot tub full of bubbles – clearly a triumph and an example of a little thing making a big difference.

Other small things that have had increasing significance in our lives:

  • Babies: The look on mum’s face when she sees a baby is a joy to behold – at a recent Village Hall event my neighbour’s new baby was quite the starring attraction – the highlight of a morning that had, up until that point, been marked by silence and glazed expressions.  Mum’s carer Alison has started taking her to the mother and baby singalong at the local library where she will happily stare at babies for hours.
  • Food:  The appreciation of certain meals is effusive and vocal – my recent smoked salmon tagliatelle was wolfed down with appreciative noises and facial expressions that proved far more gratifying than my children’s usual response to such fare.
  • Flowers:  A conversation about the primroses on her front lawn (I say conversation but I mean me talking about them) was held in the memory for the duration of the journey into the house (only a few minutes but this sort of information retention is now rare) and I was taken to the back garden to look at the new borders with some urgency.  I can’t remember the last time mum really wanted to show me something – it was like one of those scenes in a film where someone is learning a new language and they have a break-through making the other person understand them.  It was nice.

From a mathematical point of view this list of positives compared to the first list of losses gives a bleak total (X + Y = losing the will to live) but the day of the primroses and the baby in the village hall and the tagliatelle was a happy day for both mum and I.  Maybe I’m easier to please now.  That can’t be a bad thing.

 

 

 

* I would like to point out that I am not on the payroll for ‘Mind For You Holidays’ and receive nothing for my endorsements other than the hope that someone reading this might contact them and find out how fab they are.

 

 

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5 thoughts on “It’s a small world – The limitations of a Life-Limiting Condition

  1. An excellent article in an excellent series that should be read by everyone associated with dementia – time to get your definition of “life-limiting” out there. All strength to people who say you can live well with dementia and point out the things they are doing but I am always tempted to be a killjoy and say “just wait”.

    Keep up the good work and articles. Please pay special consideration to your Dad. Us Dads aren’t good at expressing our feelings to our little children (of all ages).

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    1. David – thank you so much for such a positive response to the blog and your lovely comments. Don’t worry – we are on it with Dad – relentlessly bullying him to look after himself (but in a nice way, I like to think)

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  2. Lovely article. My husband has Young Onset and I can relate to many of your stages. We are 6 years post diagnosis but my husband is still quite active although needing more physical guidance, help with dressing etc. He has been having swimming lessons since January having jumped in a pool in November and discovered he had forgotten how to swim. There is progress, it is very slow progress but he loves that there is progress. He may never manage a full length but who cares, the smile when he strings four or five correct strokes together is worth the hassle.

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    1. Thanks Christine – Mum went through a phase of really loving swimming (and getting her head under the water which had been unheard of when she was younger). The kids were a bit baffled that Granny suddenly was the first one leaping into the swimming pool on holiday but they made the most of it! Now the logistics of going swimming are trickier which is why the hot tub was such a treat.

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  3. Yes, life limiting it surely is. However, I am struck by your mum’s enjoyment of the primroses, the tagliatelle and the baby. Your mother may well be further down the road than mine, but there are similarities. Sometimes in the care home it seems she doesn’t want to join in with anything, but if you engage with my mum while she watches TV especially Doc Martin, she is interested and finds it funny. She obviously can’t follow it, but it always brings a smile to her face when I suggest watching Doc Martin. It rarely actually works unless we watch it together, and I repeatedly use the pause button to answer questions or repeat things. Today at the park she loved seeing the trees, hearing the birds, watching the fast moving river, enjoying the flowers and naming some of them… She is actually quite happy on car journeys too. She recognises the street names, but everything seems so different from when she last saw them, although in fact we drive on the same roads all the time. I think all these activities have in common one thing. You can do them in the moment. Dementia not only robs you of your past, it makes you more worried about the future, so anything you can do in the present helps to stop the worry. It is notable that the three examples you just mention are all very much things you can enjoy in the present moment. Enjoying being with and seeing a baby, eating tagliatelle, and seeing primroses, whilst being outside. So maybe its the simple things now. Thanks for the holiday company recommendation. I will look into that. Very best, Julia

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