Top tips

Our son bought my husband an OS map jigsaw (centred on the house where he grew up) for his birthday recently.  the idea was that he would remember all of the streets etc as it was from his childhood.  Ash was thrilled originally and even excited by it but it has sat, ignored, ever since.  Today I suggested we get it out and start it which was met by a look of sheer panic so I left it on the table and walked away.  About 15 minutes later Ash got up saying 'I think I'll start that jigsaw'.  He's now been putting pieces together for nearly an hour and is thoroughly lost in it.  What have I learnt?  Make the suggestion but don't push.  Also don't underestimate his abilities just because he's been diagnosed with dementia.

Have now decided to list strategies as I try them (although only successful ones - this is an upbeat blog remember).  Watch this space and don't forget to let everyone know your successful strategies as you come across them.  I'm not much in favour of giving advice as this disease affects every single person differently but if we list strategies we've found useful then people can choose to use them if they want to or ignore them if they don't.

  1. Don't ask questions - if you ask the person with dementia (and I really don't like that phrase so if anyone can suggest an alternative I will be very grateful) a question you are immediately putting them under pressure to think something through and make a decision so instead try turning each question into a comment.  For example if you're out for a meal don't ask 'how's your gammon?' but say instead 'that gammon looks good'.
  2. Build up their self esteem -  The person with dementia (we really need a new term here) will have spent months thinking they are going mad while dementia has been creeping up on both of you and their self esteem will be at rock bottom. Asking them to do things you know they can do easily will help them feel good about themselves and might even bring out hidden talents.  My husband has always been the decorator in our family but was a little slap dash to put it mildly.  As long as he got paint on the walls he didn't mind where else it went.  Because of this we have had cream on every wall in every room.  Recently I was looking around for something to occupy him and suggested we started decorating the sitting room.  He suddenly decided it would be a good idea to do the chimney breast in a different colour.  I went with it with fingers crossed but he did it and was very proud of how good it looked.  Subsequently he has painted every room, each one with a striking colour on one wall, each painted very carefully and he also chose the colours.  This would have been unheard of in the past and has made me realise that not everything about this disease is bad!
  3. Don't argue.  There is no point in disagreeing with something that has been said, it will only lead to an argument and, although your parent/other half/friend may not remember the argument afterwards they will remember how it made them feel and that will not be a good feeling to carry with them.  Does it really matter who was right and who was wrong?
  4. Don't rush.  I have never been a morning person however we no longer lie in bed in a morning as that gives Ash time to start panicking about the day ahead.  Getting up early also means there is no rush to start anything which in its turn leads to a calm environment.  If we are going anywhere I start to get ready at least an hour before it's time to leave the house.  
  5. Keep it simple.  The question this morning was 'what am I doing today'?  In the past my reply would have been 'You were going to strim the churchyard but the forecast is for rain so you might want to have an alternative in mind just in case' (and yes I know that would have been a long answer but I've never been known for being the quiet type).  Instead I said 'you were going to strim the churchyard'.  If it starts to rain he will know to stop so why go in to a long explanation that will only confuse him and he won't remember anyway.
  6. No new skills.  As this disease progresses it will become impossible for Ash to retain any new information and this is already happening on a small scale.  Once I understood this lots of other things fell into place and I realised that there is no point asking him to do anything new.  Not only will he not be able to do it but it will add to his stress levels and will destroy all of the self esteem I have been trying so painstakingly to rebuild.
  7. Conversations.  Accept that these won't be what they were but instead work out what subjects he/she really likes talking about and then, if you don't know much about them, research so that you can start different discussions until you find the interest of the moment.  Ash has quite an extensive music knowledge which in the past I haven't shared.  I still don't really but I am learning and retaining enough information to at least spark a conversation which sometimes leads onto something else.  It also helps in that he still knows far more than I do which helps with that self esteem thing.  
  8. The value of quiz shows.  These have never been my cup of tea but they really are invaluable for starting conversations.  The questions are aimed at your loved one so there is no pressure on them to know the answer but one or other of you will probably know what that answer should be and you can shout it out.  If you don't know it there are still the contestants to discuss and usually you don't have to concentrate hard to follow what's going on.
  9. Back to keep it simple.  When we first got the diagnosis I researched what foods might help and if supplements were any use then we headed for Holland and Barratt (other health food stores are available) and bought them out.  For a couple of months Ash was taking 11 tablets in a  morning and 3 at night.  Then it was time to pack for our holiday and I realised that, as we were only taking rucksacks,  I really didn't want to fill what little space we had with bottles of tablets and that for two weeks it really didn't matter if he went short of magnesium, turmeric etc.  This meant that for two whole weeks he was down to one tablet at each end of the day (for anxiety in the morning and dementia in the evening).  Now I know we were on holiday and that we were relaxing and that we had nothing to think about but what also seemed to help was not being face with a confusing array of tablets in a variety of shapes, colours and sizes so when we got home I simply left those tablet bottles in the cupboard and concentrated on the two prescribed by the doctor and it really seems to have helped.  I mentioned this to Jake at the weekend and he suggested that taking lots of tablets can subconsciously give the impression that you are ill even if those tablets are mostly health supplements.  Anyway on consideration I have decided that the benefits of keeping life simple currently outweigh the benefits of the health supplements and so have stopped them for now.  This has given Ash some control over what's happening as he knows which tablets to take and when so no longer feels quite so dependent on me.
  10. Keep calm.  Remember that wherever discussions lead, whatever comments are made and however stressed your person with dementia gets none of it is meant or planned.  There is no hidden agenda.  We had a very middle class moment a couple of nights ago (what Jake calls 'a first world problem').  I'd asked Ash to peel a butternut squash ready for sprializing and he got confused about whether or not it needed chopping up as well.  I tried to explain what I needed but the more I did this the more anxious he became and, apparently, it was all my fault.  As Jake will tell you, I am not the most patient of people and I really had to bite my tongue before trying to get us back on the right track but I took a deep breath, kept quiet for a while and then started a conversation as though nothing had happened.  It worked and all was right with the world again.
  11. You don't need to give details.  Yesterday we needed to set off early to go shopping to avoid the arrival of the holiday makers in our nearby seaside town.  I set the alarm which was fine but then told Ash all about the need to get up early and be ready for off.  This sent him into a tailspin which lasted into the afternoon and almost wrecked the whole day.  What I realise now was that I should have just set the alarm, made sure we were up earlier than usual and then gradually got us to a point where we were ready to leave the house.  There was no need to tell him the detail of the morning as, once we get up, he gets going anyway and much quicker than I do.  In future I will try very hard not to share unnecessary information.
  12. Strip away potential layers of stress.   This is interesting.  I first wrote this piece of advice 6 months ago and I recommended not setting an alarm but keeping it simple and wake up naturally.  Things have obviously moved on for us because I now set the alarm for 7am very morning now.  I began doing ti because sometimes I would oversleep and then Ash would wake before me and panic.  Setting the alarm for the same time every day regardless of when we need to get up means Ash never wakes before me and never has to lie there worrying about what day it is or what he's sup[posed to be doing.  We also have a clock in the bedroom which tells the day, date and time so he doesn't have to ask and run the risk of feeling stupid for not knowing.
  13. Remove the pressure.  Last week I stayed 2 nights at my mum's following her bounce from the pavement.  Ash phoned me in a slightly confused state to ask where his old mobile phone was.  We'd bought a new one when his old one went to the phone scrapyard in the sky and whenever he's under any form of stress he decides he can't use the new one and needs his old one back.  Until now I've just told him that his old one no longer works and tried to explain how to operate the new one.  This doesn't help at all and the stress continues.  This time I suggested that maybe he could do without a mobile phone as he's rarely anywhere where he needs on.  He went quiet then agreed.  To begin with he then managed to use the new phone but recently got to the point once again where he couldn't work out what to do with it.  Jake found him one on ebay identical to his old one and he's now a happy bunny all over again.  What's more Jake has a plan to buy two or three more so that when this one gives up the ghost we have others at our fingertips as it were.
  14. Be prepared to repeat yourself.  I've learnt that if I've asked Ash to do something and he hasn't done it then to mention it again as though it's the first time of asking.  This may seem obvious but it took me ages to work out.  If he's forgotten then it doesn't matter, if he's remembered he can point out with glee that I've already mentioned it and I can pretend to have forgotten all about it.  Win-win I think.
  15. Conversations.  I now start all conversations from scratch.  As in point 14. if he remembers the conversation from before I can develop it.  If he doesn't we have it all over again and that's ok. 
  16. Changing into clean clothes:  If your loved one refuses to changed into clean clothes it might be because he/she doesn't feel able to make a decision about what to wear or know where the clothes are kept.  I had this problem and have bought Ash five sets of the same outfit.  When he's in the bath at night I collect the dirty ones from the bedroom floor and drop a clean set in their place.
  17. Refusal to shower:  One of the difficulties you may come across as the dementia advances is that your loved one refuses to get showered.  If you aren't at that stage yet it might be a good idea to get into a routine of bathing/showering at the same time each day that way it will be come a habit and should avoid any difficulties.  If however it is too late for that I give you one example.  The wife of a friend of mine got to the point of refusing to shower or bath.  This went on for some weeks and he was at his wits end.  Eventually he persuaded her that they were having a spa day, poured her a glass of prosecco and danced her into the shower.  After that she was more than willing to get clean.  This particular scenario may not work for you (Ash has never been on a spa day and would have no idea what I was talking about) but there will be some way to get around the situation if you only think hard enough.
  18. Wanderings:  I was recently told the story of a lady who frequently got out of the house, through the gate and out into the town before anyone noticed.  The lady's husband had been watching her other actions and noted that she always walked around dark patches on the ground and turned to walk away if she couldn't find an alternative route.  He put the two things together in his head and placed black bin liners around the edge of the garden and in front of the gate.  His wife's perception of these black bags was the a ditch had been dug all around the house and one which she had no way over avoiding.  She no longer wandered.

Comments

Cornwall Girl said…
Reading this I felt resistance to the words coming up inside as it felt like I was reading a surrendered (sic)wife blog. Then I realised that by doing most of these things our lives become eaiser both of us that is and I guess thats the point. Life is not what it was but with effort it can still have meaning ...
Jane said…
I know exactly what you mean and have to admit to being selfish in doing these things. If I can work out how to make him feel better then, in turn, my life is easier. It all used to be one long battle but the minute I started down this route everything became so much more manageable and I could begin to relax.
Anonymous said…
nice