Keeping a journal

An article cropped up on my fb page today about the usefulness of keeping a journal when caring for someone with dementia.  It suggested keeping note of symptoms & care needs; challenging behaviours; eating & nutrition; toileting & incontinence; health & safety issues; medication effectiveness & side effects and information for medical appointments.  The idea is that by keeping this journal you will be able to spot what triggers problems and therefore help you avoid those problems in the future which in turn will make life better for everyone.  Making life better is obviously a good thing but what seems to be missing is the suggestion that there are things to record which will make life richer for all concerned.  There was no mention of 'joy'.  So, what to record?  I suggest one or all of the following but you may have others with which to create your own list:

What makes your loved one laugh?  A comedian we both like is on at our local theatre in a couple of months and I had asked Ash if he fancied going but he said he didn't think so.  Last night the comedian was on the tv and neither of us could stop laughing.  At the end I said 'he's on in ........ soon.  Shall we go and see him?'.  The answer this time was yes.  A night out and an evening of laughter.  Life enrichment I think.

What makes your loved one join in a conversation?  When we first got married Ash and I agreed that we would never have the tv on during a meal and we stuck to that for over 35 years.  However once dementia came on the scene we would sit in silence through a meal (always eaten in the kitchen) and then retreat to opposite ends of the house still in silence.  Meal times had become a way of refueling and we seemed to have nothing left to say to each other.  I thought about this and installed a small tv in the dining room.  We now eat our evening meals in there while watching a quiz show.  Ash can answer questions I can't, we can both feel superior over some of the contestants and, most importantly, it stimulates conversation.  You may not have thought of watching Pointless/The Chase/Who Wants to be a Millionare  as life enriching but in certain situations they can't be beaten.

What topics of conversation does your loved one like talking about?  As dementia takes hold someone within its grasp begins to lose their ability to process new information and that can make holding a conversation difficult, especially in a group.  It doesn't mean that they have lost all the information they once had in their heads but they don't always know how to get at it.  Ash has always been interested in music especially from the 1960s and 70s so it's not difficult to get him to talk about it.  I on the other hand have difficulty remembering details about something I heard this morning.  This makes it easy to begin a conversation and once I have said 'Who's singing this song and what on earth is it called?' we can keep things going for ages.  Anything that engages your loved one in conversation I think can be considered life enriching don't you?

What type of outings does your loved one like?  Given the choice Ash would always choose his favourite walk (from our doorstep) over venturing into the outside world but I hold the view that we should do as much as we can while we can.  He has always disliked sightseeing and with dementia lurking his concentration span is most definitely not what it was so it's not much good using our National Trust membership for going round grand houses with crowds of other people, however we can use it for parking in beautiful countryside at the beginning of walks with the dog which bring a huge smile to his face and gets us out and about.  Again life enriching for both of us.

Which photos does your loved one like looking at?  People with dementia find it increasingly difficult to put names to faces in photos but it is worth watching to see which subjects hold the most interest.  When you've figured it out those are the ones to produce.  Ash has always taken photos and has rarely started a project without having his camera nearby so we have albums and boxes of photos everywhere around the house.  There is our wedding; Jake as a baby, a toddler, at primary school, as a teenager and then, increasingly, as a grown-up; every holiday we've ever been on; building projects; garden projects; every car we've ever owned; walks we've been on etc. etc.  Over the past few months I have gone through these and produced the odd one here and there all of which Ash has looked at, commented on and admired.  None however have had the impact of the ones he's discovered recently of life throughout his time in the police.  It's been quite a while since I've seen him so interested in something for so long and he actually spent a whole day going through photos on a facebook group and calling me through again and again to look at yet another one he'd found.  That was certainly a life enriching day and has prompted me to look in the loft to see what others I can find.  (Luckily Jake and I are both confident people and can cope with ranking lower than the local police force on Ash's interest scale).

What makes your loved on laugh?  I have put this last but just so that it's uppermost in your mind as, in my opinion, this is the most important thing of all.  Being able to laugh at something, at each other, at the dog, at anything at all will make life seem brighter however dark the clouds gathering around you.  Try little comments, programmes on the tv, slapstick films etc and watch for the reaction then duplicate it wherever possible.  My mum doesn't have dementia but she does have real problems with her memory and concentration.  She's 89 and trying to follow a film is impossible for her but if I put 'Home Alone' on or '101 Dalmations' (the Glen Close version) she will be glued to the television and laugh almost all the way through.

So these are my suggestions for a journal.  Don't dismiss the original list.  The things on it will all come in useful but don't forget either to notice the things which will enrich all your lives.  None of us knows how long this journey is going to take so we need to get the most (and the best) out of it while we can.