The benefits of having a mother with dementia come to stay (not as miniscule a list as you may suppose)

IMG_0222_2 So this is one of those rare and wonderous things: a blog post about mum’s dementia that is not unremittingly bleak and does not make you feel suicidal to read it (hopefully; unless there are other reasons that my writing makes you suicidal in which case I suggest you unsubscribe immediately).  Mum came to stay this weekend – and it wasn’t that bad!  I realise that this is faint praise for a house guest and if anyone ever wrote that about me visiting them I’d be deeply offended, but previous extended visits from mum have been OK at best and at worst, catastrophically miserable.  To have a positive experience is worth shouting from the rooftops.  I realised during this visit that there are a few tiny compensations for having a relative with dementia come to share your home, however briefly:

  1. One is forced to keep social and work commitments to an absolute minimum – There is no point in ‘having to be’ anywhere when you aren’t sure how long it is going to take you to get mum breakfasted, in and out of the shower in one piece and dressed to an adequate standard (i.e. majority of skin covered in semi-appropriate attire, ideally with underwear on first).  On Saturday this process was complete by 11am, on Sunday, as I got into my stride, we were showered, dressed and downstairs drinking tea by 10.30am.  I suspect that the line of progress is not exponential though – I don’t think we’d improve our timings simply with duration of stay but that is the beauty of having reduced a usually frantic timetable down to a few key elements – it really didn’t matter if we were still in our dressing-gowns by mid-afternoon.  As a result of a reduced social calendar I was able to get four loads of washing done and out on the line, prune the hedges, finish a book, let the kids run feral in the garden late into the evening without needing to get them in to bed in time for the arrival of a babysitter, and to get two decent nights of sleep without a hangover in the morning.  Bonus!
  2. Having a house guest who doesn’t need to be entertained is very relaxing – Even with one’s very closest friends there is always an element of needing to be seen as the hostess in your own home.  Nobody wants their friends or family to think that they make no effort to attend to their needs if they come to visit, but mum’s needs are so wonderfully simple that I can be the perfect host by just sitting in the garden reading.  As long as she is clean, fed and watered she is happy (and I mean that genuinely – I’m not just saying it to excuse my general laziness).  Simply being in our house with the children and the dog careering around is ample stimulation so no dazzlingly witty repartee is required (because obviously, if it were I’d be up there with the best of them – conversational openers such as “I saw this lady at work with a funny wart…. or “last week one of the children said something mildly amusing” are my forte.)
  3. Having mum to stay provides little glimpses of the person she used to be before the dementia –  Normally when mum comes to visit she sits on the sofa in the kitchen, occasionally gets up and moves towards the kitchen counter to see if she can help with food preparation, sits back down again, drinks her tea, eats her lunch and then leaves.  We can have entire afternoons with her uttering fewer than five words and barely moving.  But given a 48 hour window she seemed to open up – just a little.  She wasn’t quoting great Shakespearian monologues to me but we managed a few properly constructed sentences, something that passed for a conversation and even a joke!  I had brought her a cup of tea during the morning and apologised that it was a bit stewed, later when I asked if she wanted another she said “Yes.  A nice one this time?” with a little mischievous look in her eye.  Again, not the most outrageously hilarious thing I have heard in my lifetime but an attempt at comedy nonetheless and I didn’t even mind her flogging the joke to death by repeating it every subsequent time I offered her tea.   I also made the discovery that she can still read and understand what she has read – she just cannot verbalise it.  Listening to her trying to read ‘Peppa Pig’s Birthday Party to my youngest daughter was agonising but when my husband mentioned something about a local news issue she piped up with “That was in the paper!”  Which it was, and the paper had only arrived that morning.

This was also the first time that we had tried the ‘intermittent home care option’.  Having investigated how much it would cost to have the lovely Alison to stay for 24 hours (an eye-watering £448 – I’m not complaining, it’s good that such an important job is well remunerated) we decided that mum could probably be left to fend for herself for a couple of hours and certainly overnight.  I dropped her back at her house on Sunday evening, got her supper and a cup of tea, put the telly on and left (with a degree of trepidation) knowing that Alison was coming at 8pm to stay for two hours and get her ready for bed, then returning mid-morning to get her up and dressed.  Dad was due to be back late the following evening.  I left my mobile number in case there were any issues but Alison did not call and when dad returned all was well.  This is excellent news for the future because it allows a degree of flexibility in terms of dad being able to take the occasional respite break without it falling solely on the shoulders of me and my sister to take up the full weight of care until he returns.  Although, as it turns out, the full weight of care was nowhere near an onerous as I had anticipated this time round and in fact, when I returned home on Sunday, the house felt a little emptier.  I realised that I missed mum being there and it’s a long time since I felt that way.

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3 thoughts on “The benefits of having a mother with dementia come to stay (not as miniscule a list as you may suppose)

  1. I find that involving Mum (whose dementia has, I suspect, progressed less far) in simple tasks is good too. For example, we can fold sheets together, hang up the washing, do light gardening, prepare vegetables, propagate or re-pot easy indoor plants, plant bulbs, arrange flowers, set the table and sort and throw things away (as long as they are mine, not hers). Her involvement may be limited and/or she may well get distracted mid-task, but it doesn’t matter – I can carry on on my own or bring her back into it after a short while and we can also chat about the task.

    Her conversational technique is to maintain a running commentary on the birds in the garden or other things going on around her or to talk about some of the many photographs and photograph albums she likes to keep around her and she continues to ask questions (usually several times as the answers don’t stick). She can also answer questions, although the answers may well be disconcerting and bear little relation to the facts as I understand them.

    Liked by 1 person

    1. Thanks Annabel – What is interesting with this disease is it takes different things from different people. With mum the loss of language and conversation has been the hardest to bear and she seems relatively unique in how dramatic and isolated that loss is. But to be honest, I get a running commentary and repeated questions from the kids so the long comfortable silences with mum are now more welcome than alarming. In terms of daily tasks I used to try and involve mum but seeing her wielding a knife whilst chopping carrots last year was frankly terrifying so we stick to hanging out washing now (which often needs to be rehung but it does give us a sense of shared purpose for a while).

      Like

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