Dementia: Dealing With Special Days

Today is Mothers’ Day and my brother John’s birthday.  As readers of this Blog will know mum has mixed dementia; John has Alzheimer’s.  This post argues that with dementia in the room it may be sensible to let such days pass without special celebrations.  Maureen’s reaction to a Mothers’ Day Card yesterday supports this assertion.

Maureen and I have never placed great stock on celebrating Special Days.  For some years we have recycled cards and bought each other token presents.  When we used to go to Portugal for Christmas we always said that we had paid for each other’s holidays.  I have often said to Maureen that her ongoing presence is my present.  However, we respect that everyone has a right to celebrate events in their own special way.

When dementia is a feature in lives then a different perspective needs to be taken on matters.  I have sent cards to my mum and brother.  Neither of them would know it was a Special Day unless they were reminded: John doesn’t know his own wife any longer, mum knows us if we prompt her.  I would suggest that every day is a special day for someone with dementia: reminding them that they have forgotten a Special Day may be unwise.

The arrival of a Mothers’ Day card here yesterday caused Maureen distress, rather than pleasure.  She couldn’t read it, and was unsure who it was from.  She then said ‘I can’t remember what he looks like any longer’. The card has now been stuffed in her handbag inside a calendar from last year.

In my view it is better to let such days pass without any form of acknowledgement or celebration.  I will visit my mum and brother (pictured above) next weekend.  It will be unkind to spend more than half an hour with my mum.  With luck she will manage to stay awake.  Hopefully she will let me hold her hand.  It doesn’t matter if she doesn’t know who I am as long as she feels safe and loved.

My visit to see John may be even shorter.  He will look at me and smile.  I have no idea if he knows who I am.  Again I will hold his hand and show my appreciation of the kindness he has shown me throughout my life.  If some of his ‘lovely ladies’ that look after him are around his interest in me is likely to be minimal.

Every day is Special whenever I’m able to visit Coventry and see my family.  I realise how lucky I am that they have been such great support to me in the last 70 years.  If National Express are on time, and local buses are on schedule, I might even get to see my sisters, daughter and her family: that would make it a really Special Day.  

Dementia: Saturday’s Sprinkle of Gratitude (Week 4)

We are extremely grateful for the support we receive from the National Health Service.  I posted praise for the good service we receive from our Medical Centre yesterday.

Yesterday morning, Maureen’s examination went well.  She was so relieved that things are fine.

I had my scan on my left shoulder in the afternoon.  I have a tear in my rotator cuff that may need surgery.  We are both very grateful that we are to be able to call on the NHS whenever we have concerns about our health.

Maureen was a revelation in her preparation to see her G P.  She showered and was ready in good time for her appointment.  We have all been concerned with her reluctance to shower and wash her hair in the last few weeks.  I’ve heard carers try to cajole her in that direction on many occasions without success.  Yesterday she did it of her own volition with minimal assistance.

She was a different woman yesterday morning: up and on the go at a time when she would normally be reluctant to get out of bed.  Having a purpose for the morning clearly made a difference and provides real food for thought.

Dementia: Superb Service From Our Medical Centre

Once again I’m posting to praise the superb service we always get from Clee Medical Centre. Maureen asked me to get her an appointment this morning.  I phoned shortly after 8 am and fathomed my way through a new automated service.  Dr Ravinder Munjal her G P phoned me back within half an hour to arrange a consultation at 11 am.

I don’t know how they do it but Clee Medical Centre are able to offer exceptional availability of Medical Practitioners at a time when it is difficult to recruit staff in North East Lincolnshire.  We continually count our blessings for the support we receive from all staff at our Medical Centre. 

Dementia: Stick To Plain English

I have been concerned lately about how much Maureen has been sleeping: last night her short doze on the sofa came to my rescue.  Around 9 ‘o’clock ‘I Iost it’, and a rather heated exchange took place. I had been dozing myself whilst watching T V, and awoke as Maureen came into the room.  Several misunderstandings took place in our interaction, and I ended up telling Maureen to go away in my best Anglo Saxon.  A short while afterwards I tried to dig myself out of a big hole, and Maureen suggested I might like to sleep in the car.

It is possible that I had waited my moment to tell Maureen to ‘go away’, as she had used the same parting shot as I left for London a couple of weeks ago.  If revenge is sweet I was certainly not experiencing a warm feeling at all:  in fact quite the opposite for needlessly upsetting the apple cart. If Tim, one of my nephews had been with us last night I know what he would have said: ‘language Uncle Paul’.  He wouldn’t have liked me talking like that to one of his ‘Favourite Ladies’.

I let Maureen doze for half an hour after my expletive and then played Prince Charming.  Sleeping Beauty woke up with no apparent memory of my misdemeanour.  It’s one of the few occasions when I’ve been grateful for the consequences of dementia on Maureen’s memory.

I’ll try to stick to plain English from now on!

Dementia: Finding Her Husband

This post is an update from last night’s –Whatever Next? – when Maureen told me she was waiting for her husband to come and take her home:

It didn’t take me long to settle her and to be seen as her husband again.  Just by chance I came downstairs singing a Bing Crosby song that her dad used to sing to her, and that did the trick.  Suddenly Maureen remembered who I was and was happy to go to bed.  She told me she was glad I was back as she had been wondering where I’d go to. Subconsciously I was working to the mantra of Paul Martin, my Counsellor, who has schooled me on how to ‘minimise distress’.  His tapping on the shoulder technique has worked wonders on many occasions.

I was referred to Paul by my G P.  He works at Clee Medical Centre on Wednesday’s.  He has his own Practice for the rest of the week.  Paul has helped me to ‘think my way out of depression’.   Without his help I may well have been on medication for life – the prescription of a Psychiatrist.

When I happened to mention to Paul that Maureen had dementia I didn’t believe my luck. His initial experience had been as a Mental Health Nurse working with patients who had dementia.

Last year during one of our sessions Paul asked me if I’d ever considered blogging.  I looked into his suggestion, and with the support of various people put my toe into the water.  His suggestion has been transformative, as blogging has become a cathartic pursuit. I’m amazed at the number of people from all around the world who continue to support us on this journey.  How fortunate I am that Paul Martin is on the staff of Clee Medical Centre.

I was also in touch with the Alzheimer’s Care Resource Centre in my hour of need.  They provided prompt advice to; stay calm and accept her reality.  Blogging and the Internet are such helpful resources as we travel on this journey.

Dementia: ‘Being A Care Partner: I’ve Got It Now!’

I’ve got it now the solution to all my struggles of being a Care Partner for Maureen.  All I have to do is go next door sit on the stairs, pour out all my troubles to Kate and ‘Hey Presto’ things change.  A couple of hours after I unburdened myself to my neighbour Mrs Dementia had scarpered and Maureen was back home.

Towards the end of the afternoon I mentioned that I needed to go to the Post Office.  Before I could say ‘Jack Robinson’ Maureen had her boots and fleece jacket on.  Just for once we both had gloves on and braved the cool air without too much discomfort.  On our return we added further distance to our walk to see the Holiday Camp coming to life as the season is about to begin.

As we prepared our tea I fired up the record player and we sang along to Johnny Nash. We continued singing along with the odd move on the kitchen floor as we tidied up after our meal.  Just before kick-off Maureen decided that it was time for bed.  She returned downstairs at half time and I mentioned that we were already 1-0 down.  I accompanied her upstairs and helped her into bed in time to hear the second-half .

Things didn’t get any better in the second half as are keeper spilled the ball and we ended up losing 2-0.  I’m wondering if ‘Mogga’ needs time on the stairs to sort the Sky Blues out.

One other result of sitting on the stairs’ that is quite amazing.  When I returned to bed after a loo visit Maureen calmly said ‘who’s that’?  No loud scream or upset at all.  So it appears my time in the naughty corner paid off perhaps I’ll have a chat about football on Saturday morning.  If I don’t do something soon it will be another season in Division One for Coventry City.

Dementia: ‘Know Thee Place Lad’

The words of the ‘Beast of Bolsover’ came to mind this morning when my neighbour said I could sit on the stairs and talk to her.  I needed some wise counsel and as as Kate used to be a head teacher I duly took my place.  I’d better set the record straight here: she was standing in the hall blow drying her hair at the time, prior to a lunch date.

Kate has a sharp mind on many issues and understands dementia from supporting her mum.  I needed to talk to someone about ‘Sleeping Beauty’s’ reluctance to move herself from the sofa.  We chatted as Kate put the finishing touches to her appearance.  She is always prepared to share her experiences after years of supporting her mother.

We concluded that this cold and damp spell was the problem, rather than Maureen.  As I said to Kate as I was leaving; only those who have a lunch date or a doctor’s appointment would venture out in this weather.

I can’t recall being put in the naughty corner when I was in Primary School.  Despite being retired for a while now Kate still knows where to put pupils when they are attention seeking: Dennis Skinner would have approved I’m sure!

 

Dementia: A Rude Awakening

Maureen was up early yesterday morning and decided to make a sandwich for herself. Seeing her struggle to find what she needed, and satisfy her need for a snack, brought tears to my eyes. It made me realise that I have probably deskilled her by becoming the in-house chef as she has now forgotten how to make a sandwich.  This experience has reminded me of Clarice’s haunting words that ‘once someone with dementia stops doing something, they will never be able to do it again’.

For a while I became very distressed about what appeared to be Maureen’s dwindling functional capacity. At first the scene in the kitchen raised major concerns about the speed that Maureen’s dementia was progressing.  Then I realised that I had unwittingly added to her struggle.  The kitchen could not have been littered with options on every work surface unless there was choice over what to put in her sandwich.  Her problem was in choosing which cheese and margarine to use.

Making sure we are well stocked in provisions is not a priority when dementia is an unwanted intruder in your lives.  The most important thing is to have the basics clearly on display so it is easy to help yourself to a snack.  I need to keep focusing on the basics of KISSS if Maureen is going to have any chance of retaining a semblance of independence.

During the afternoon I sat in our lounge for some time watching Maureen trying to remove a tissue from a pocket in her cardigan.  It took her ages to sort out how to find the tissue as she sat with her cardigan on her lap.  She has a similar problem with zips as she can no longer fathom how to find the fastener and pull the thing up.  Unfortunately, I don’t think tiredness is the issue here it seems likely that fasteners are now a problem.

Maureen had several periods when she was ‘resting her eyes’ yesterday.  I have a feeling that sleep is her response to boredom.  If she has something to do she stays awake but housework seems to be her only time filler at the moment.  This is something of major concern as she often says she is fed up with cleaning up or doing the dishes. 

As the evening drew to a close Maureen went to our bedroom for quite some time.  She appeared to be hunting for clothes, so I left her too it.   Frustration appeared to follow and as she looked tired I encouraged her to go to bed.  Once again I had to remind her where she slept, and she made it clear she didn’t want me in bed beside her.

I slept fairly well in the spare room until Maureen yelled out our around 2 am.  She came out of her bedroom in a hurry, apparently afraid of something.  Once she saw me she seemed to calm down but promptly declined my offer of joining her in the marital bed.  She shut the door firmly and I have not heard her since.

I have already been up a couple of hours this morning.  While I have been decluttering a little more, I have also been having a few thoughts on our situation.  I have some ideas that may help Maureen to retain, or even regain, her functional capacity.  It also strikes me that having someone to talk to about her feelings might help.  As problematic as the former is, the latter is even more difficult.  I can try things, and ditch them if they are not working. Suggesting to Maureen to open up to someone about her feelings is something of a different order: old habits die hard!  

Dementia: Looking Back: Looking Ahead (Week 8)

It took a while for Maureen to settle down last week after my day trip to London.  Things began to return to normal by the middle of the week, as she began to regain her energy after her ordeal.  In retrospect I think Maureen’s reaction to me leaving her for the day was quite understandable. She objected top being left with carers for 12 hours while I went to visit someone who could have come to see us. Her thoughts about accompanying me to London were way off the mark: the trip would have exhausted her.  However, her questions about me going ton see someone who is able to come to see us was spot on. From now on I will only visit my mum and brother who are no longer able to travel to Cleethorpes.

One issue that needs to be addressed in the coming week is sleep.  Maureen is sleeping a lot of the time.   I’m not sure if this is genuine tiredness or boredom when she doessn’t know how to fill her day.  My problem is the exact opposite as I’m unable to stay asleep for any length of time.  I will raise the sleep issue in various circles in the coming week.

Next week presents  an interesting challenge with Mothers’ Day on the horizon.   I can get off lightly with my own mum. It’s easy for me to argue that she doesn’t want a crowd and leave it to folk in Coventry.

I can take the same position on her 95th birthday, early in March.  I know that my sisters, and daughter, will do her proud on both of these days.  My plan is to visit a few days after her birthday as too many visitors will add to her confusion. Maureen is keen to accompany me on my next visit – it would be lovely for them both if she could make it.

I’m not sure that reminding someone with dementia that it is a special day is always helpful or necessary.  I think letting my 70th birthday pass was a pragmatic decision as far as Maureen was concerned. Reminding her it was my birthday would have been unkind.

As Maureen has not seen her family for a while they will need to be very careful if they are able to make it on Mothers’ Day.  It’s possible she may no longer recognise some of them; remembering their appearance from when they were much younger.  The very same issue that I may well face when I eventually make it to see my mum in a couple of weeks time.

Dementia: Elvis Spoiled My Day

I suppose it had to happen ‘Elvis’ came back to the Ricoh almost a year after he was sacked and claimed all three points.  Someone needs to tell him that he spoiled my day.

I made up my mind yesterday to put into practice something I’d read in the week.  Several research projects have suggested that gardening has a positive effect for those who have dementia.  My only problem yesterday was that I knew it would be too cold for Maureen to join me outside, or for me to stay  in the garden for very long.  So throughout the morning I popped outside for ten minutes at a time.  Maureen stayed in the warm, supervising my efforts from the patio doors in the dining room.

As I pottered she watched my efforts as I improved the prospect from our dining room. After several bursts of activity I introduced some colour, and order into what had become a tired scene.

We took our mid-morning break and I sat back with some satisfaction looking at how four additional polyanthus, along with some tidying up, had added a splash of colour to what had become a very tired scene.

After a warming lunch I sat back to my usual Saturday afternoon.  The Sky Blues were unchanged from their last match a 6-0 victory over Bury, and I anticipated another high scoring win against Fleetwood.  Elvis spoiled all that as his team ran out 2-1 winners.  I know it is rather silly but my mood always dips when we lose.  It could have been worse as my bet would have already been down had the bookies accepted my wager that not only would we win the league but we would be unbeaten for the rest of the season.  Thankfully my quid at 20-1 is still on.  I think the odds would have been even better after the way they played yesterday!

By the way for the uninitiated ‘Elvis’ is Steven Pressley the dastardly manager of Fleetwood Town. Just as Coventry City missed an opportunity to stay in touch with the leaders of the division I also failed to make the best of things.  Rather than slipping into despair about the fortunes of my team I could have turned it into an opportunity.   Elvis could have been artist of the night and Maureen would have waxed lyrical.  My disappointment with the footie meant that I failed to carry out my duties as the resident  D J.  Instead ‘we took an early bath’, as they say in the game, and were in bed by 9 pm.

I wonder if Maureen would have sang along to this one with some gusto?