Tag Archives: Being Flexible

Dementia: ‘What’s The Plan Action Man?’

General,

Maureen has often posed the above question to me in the timewe have been together.  It’s her catch phrase for checking what fancy doing on any particular day.  She is one of the most  amenable people I have ever met, and generally goes along with my suggestions about how we should spend our day.

Action Man now has to consider how Action Woman is on the day.   She has never been one for getting up in the morning and jetting off on a late availability holiday.  Maureen likes to plan ahead, and work to lists so, nothing is forgotten when you arrive in the sun.  So if a holiday is booked planning and packing are done well in advance.

It’s a lovely sunny day here in Cleethorpes, so it looks unlikely that the weather will restrict our options.  It is more likely that energy levels will have to be taken into account, after our early morning start to the day. Staying local may be the best option; with a walk on the prom and the beach.  As Autumn arrives we need to make the best of what might be an Indian Summer, because it may not last long.

As always I will fly a couple of kites: two stand at the ready in the garage if the wind gets up. Metaphorically speaking; I will also continue to put another couple of ideas into the sea breeze. Swimming, and ballroom dancing, seem worth trying to get off the ground – so best float them up there.  I’ll keep you posted on progress…….

Dementia: What Are We Going To Do Today?

General, ,

I recall some sound advice I received from a Mental Health Nurse during one of my many periods of depression: ‘Never go to bed without some idea of how you are going to spend the next day.’    Whenever I bump into him I always thank him for this simple piece of advice; because it works.  His advice is crucial to follow as we travel on our journey with dementia.  In my detective role ( as advised by Teepa Snow) I think Maureen’s regular query each night about ; ‘what are you doing tomorrow?’ is possibly more about: ‘what are we going to do tomorrow?’   So I always try to plant some ideas on how we might spend the following day.

As it is Saturday today there are a number of options on the horizon. There is likely to be a Car Boot Sale just across the road, and sometimes we pop across to search for bargains.  With luck I will get that fig plant that I want for my son in law.  I have also mentioned that we could visit the fruit and vegetable market in Grimsby.  We always enjoy wandering around the stalls, as there is a feeling of going back in time in such surrounding: an escape from the impersonal nature of Supermarkets.

At this time of the morning I really have no idea how we will spend our day.  The important thing is I have planted a few ideas that may just come to fruition.  It is bad enough when you are depressed and you can’t think how you are going to spend your day.  Such thoughts even surface when you are retired and have the whole day before you.  I would guess that none of these situations are comparable to having dementia, and not being able to remember how you used to spend you days. However you have to remember all of this is speculative: I am only a budding detective with limited experience of being a Care Partner to someone with dementia.  On the other hand perhaps I am gradually becoming the back up brain (BUB) that my pen friend Kate (Swaffer) has patented in Australia.

Dementia: Two Important Ladies

General,

Today is our 17th Wedding Anniversary – an important event in itself.  We don’t normally do anything exceptional to celebrate, so we willFeatured image probably have a quiet night in.  As the ‘in house chef’ it is my responsibility to create dishes suitable for the occasion.  It is also the day when I am meeting our social worker to progress my Carers Assessment.  That is where the other woman in the photograph: my mum comes in.  I need to go to visit her as soon as possible.

Mum is 94 now and lives in a Care Home in Coventry.  She is rather forgetful and has vascualr dementia.  If I don’t get to see her soon she may forget who I am.  It is likely that she will deny I have been to see her within half an hour of my departure.  However, just to be able to take her out for a short ride around local country lanes is all she asks. She remains so grateful for such small pleasures.  If she behaves, I might even take her to her favourite Country Park and treat her to an ice cream.

The meeting with the social worker is opportune after the events of this week.  It is now time to draw a line on Maureen wandering or being left to her own devices.  We have had more than our share of good fortrune on that front: chancing our luck any further is not an option. This raises the thorny issues of independence and deprivation of liberty.  These mattres have to be dealt with sensitively, as it is vital for us all to recognise the sterling efforts Maureen makes day after day in the face of adversity.

I chose well 17 years ago and it is until ‘death do us part’ as we continue on our journey with dementia.

Dementia: Sailing Lifts Mood

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Yesterday evening Maureen woke up from dozing, on the sofa, in a very distressed state.  Finding no-one else in sight she thought she was alone and didn’t know where she was.  I heard her crying; called her and she eventaully joined me sitting at my computer, in our box room.  There is nothing new in this event; since stroke, and the onset of dementia, it takes Maureen a while to come round in the ‘morning’.  Faced with her presentation I decided on a simple route to help her out of her distessed state: ‘Sailing’.

Once we went downstairs I immediately put ‘Rod the Mod’ on the Cd Player.  We have always been fans of the ‘Lad’ and Maureen often sings along to his music.  I think I also recalled that the next two tracks were: ‘I Don’t Want To Talk About It’ and ‘Have I Told You Lately That I Love You’.  I thought such meaningful music would help to ground my dear wife.  Then I thought of an addition to my ‘cunning plan’.

I knew that Maureen would probably venture outside.  One of the first things she does every ‘morning’ is to open the back door and walk around the garden.  True to form; she put on her shoes and ventured outside.  Just by chance I found her something useful to do – fill up the bird bath with water.  We then both made it a more pleasant experience for our feathered friends by removing some of the sludge, before Maureen topped up with clean water.

Music is a key tool for lifting mood in this ‘Care Home’.  It isn’t very often that it doesn’t do the trick.  Later in the evening with YouTube on the ‘girl’ was singing her heart out to Christie Hennessy.  So plain Sailing yesterday evening for us; then it got even better.

Marie our daughter in law received our phone call and confirmed that it is our Wedding Anniversary today!  I don’t know why but both of us always struggle to remember the exact date.  I think it is possible that it is because Maureen made me serve a seven year apprenticeship before she agreed to become my wife!

Three pieces of music to help lift your mood:

Sailing by Rod Stewart

Remember Me by Christie Hennessy

Wedding Day by the Bee Gees

I know this is an early morning post but it is our Wedding Anniversary you know!

Dementia: What A Difference A Day Makes

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It’s 6 am on Sunday morning and we are both up with a spring in our step.  I have been up for a while tidying up one or two loose ends.  Maureen has just come down to seek her first cuppa of the day.  I know beauty is in the eye of the beholder but she looks ‘something else’ today.  The reason for both of us feeling good today is largely because Chloe was here yesterday for a couple of hours.

Our social worker managed to squeeze us another two hours of carer sits.  To get our ‘adopted daughter’ at such short notice was down to Michelle at the Care Agency.  When you consider that both parties are under considerable pressure I feel refreshed that they recognised the need for a compassionate response to my cry for help.  Such responses are really appreciated when the relentless pressure of being  Care Partner is grinding you down.  They both spotted a man on his knees and managed to pull out all the stops to help him stand a little easier.

Chloe breezed in with her normal matter of fact manner telling Maureen she had: ‘popped in because she was in the area’.  Within a short time she skilfully eased Maureen into the shower and things were underway.  This allowed me to pop out into the garden and sort out our vegetable patch.  Once the beans were down and in the compost bin, I put my head around the door to see the ‘hairdresser’  in action.  As Maureen says: ‘they are not allowed to cut as they are not trained to do hairdressing but they can wash and blow dry’.  Chloe is also an ace with the iron, the vacuum cleaner and all the other gadgets we use to make life a little easier.

When we ‘ran away’ to Cleethorpes all those years ago we never thought that we would get old one day.  Our respective children are scattered around the country; busy with their own lives.  Adopting Chloe has made such a difference to our lives and now we have further plans to add to our family.  Rosie is here on Wednesday again and she seems a likley candidate to help us fill a gap in our lives.  More like a granddaughter, as she is about to go off to University, but we can still see her at weekends if we play our cards right.  Extending our family in this way will make our house seem even more like a home.

With dementia you never know what any day will bring, yet there is room for optimism in this household today.  If we continue to turn our house into a home then there is no need to feel down that Autumn is on the horizon.  It is September the start of Term and another Academic Year.   It is up to us to make of it what we can.  Our subject matter that is absolutely clear: to live every day as if it is our last.  Thanks Kate for that one:

Dementia: ‘I don’t believe it’.

General,

I have chosen  YouTube footage of Victor Meldrew’s  to open this post: ‘I don’t believe it’.  Quite simply because there appears to be progress on the underwear crisis that has bugged Maureen since stroke.  Yesterday morning: no tears and an announcement that decent support and coverage was in place.  Quite unbelievable after the tears and upset that have been part of Maureen’s early morning routine for months.  I think it is worth explaining the team effort that has gone into solving this problem.

My efforts at solving the shortage of suitable underwear have been fun but unproductive.  I have been pleasantly surprised at the help I have received from female shop assistants as I have trespassed amongst the ladies undies.  My knowledge of the intimate detail of ‘unmentionables’ (as my mum used to call them) has blossomed as I have perused the hangers of most superstores.  I think it is possible that my white thatch has eased my way around those silky areas that are not normally familiar to men.  On the brink of giving up I asked Chloe, Maureen’s main carer, to intervene.  With just one mission she appears to have hit the jackpot; with just a little help from your truly.

Chloe has obviously sized Maureen well; as my efforts had never felt comfortable.  However, It is possible that I have played a key card to ease things along.  I not only washed the latest purchases before secluding them in Maureen’s undies drawer, I also used fabric conditioner to make them softer to her sensitive skin.   Another example of helpful advice from friends on Talking Point.   So teamwork may well have brought to an end the distress that became part of Maureen’s daily routine.  Only time will tell and I certainly hope I will be able to continue with my Victor Meldrew impressions.

NB: This is an early morning post as Maureen ‘camped out’ on the sofa last night.  I will explain all tomorrow.  Things are changing rapidly here and this is more than a little dip in her presentation.

Dementia: Resenting Being A Care Partner

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I am beginning to resent the restrictions placed on my life by being a Care Partner to Maureen.  As Chloe, our regular carer, said to me the other day: ‘there is a danger that you begin to feel like a prisoner in your own home’.  I can still pop out for the odd hour but it is something of a calculated gamble.  I escaped for a couple of hours yesterday and managed to see the Sky Blues beat Burton Albion.  There were some concerns on my return and Maureen was decidedly quiet.

Things were not quite as they should have been when I got home from watching the football match:  the fridge door was wide open and keys missing.  I did not probe the latter immediately and they surfaced during the evening; even two additional keys that had been missing for days.

I think it is likely that Maureen is not happy with me going because she doesn’t like being left on her own.   It is difficult to know if she resents me going out or is frightened about being left alone.  The coming week gives me an opportunity to deal with my resentment and to take account of her concerns about being left alone..

My initial steps to freedom need to be to make sure I go out when there is a carer sit.  I need to return to a routine of activities that have fallen by the wayside in recent months. Tai Chi, swimming and meditation need to be regular pursuits; both for company and well being. There is nothing stopping me returning to both Tai Chi and a visit to the Leisure Centre this week.  This morning will be taken up with physiotherapy treatment on my troublesome left shoulder.

I am hoping to visit folks in Coventry in a couple of weeks and will clarify my plans with those who have to arrange care in the morning.  Just to be on the safe side I will pop into the Care Agency shortly to chat over our requirements when I am planning to be away from home in the coming months.    This may alleviate the problems of the past, where the social worker and the Care Agency have been passing the buck and I have ended up not going to see mum.

So my simple plan for dealing with resentment is two fold.  Firstly, accept that Maureen has every right to feel ‘miffed’ about being left on her own when I go out to pursue my own interests: her resentment could well be about having dementia.  Secondly, I can escape from my chains and reduce my feelings of resentment by incrementally developing a life of my own.  I simply have to keep taking one small step at a time.  As Maureen often tells me: ‘Slowly, slowly catchee monkey’.

Dementia: Carer’s Assessment Needed

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I am failing, at the moment, to make any inroads into improving my sleep pattern.  This has to be a high priority because if I continue with my current lack of sleep I will not be able to function adequately and risk becoming ill.  It seems fairly obvious that the amount of outstanding business that whirls around in my head when I wake does not help at all.

I am hopeful that this morning’s early shift clearing of my in tray had dealt with some of the most important matters. There are still some things that need clearing up but nothing pressing – I hope!

Our Care Plan needs reviewing and contact from our Social worker yesterday is reassuring.  I am optimistic that a Carer’s Assessment will help my aspirations to be ‘a man rather than a martyr’.  An earlier blog made reference to my struggle to develop ‘me time’.  There are lots of things I want to do, to have a life outside of dementia.  I recognise there is a balance to be struck in all of this but the scales need to be tipped in my direction a little more.

I anticipate there are interesting times ahead and I hope this statement becomes more than a Chinese curse.

Dementia: Building in Me Time

General

This morning is illustrative of the progress we have made in the last few weeks.  My purchases earlier in the week to resolve Maureen’s clothing shortage had only been a partial success.  It’s not easy for a man to choose ladies underwear and it is hard for any capable woman to feel she needs help on this front.  We now seem to have overcome this matter; through perseverance and maturity.  In fact we had great fun with the early morning Fashion Show, where I assisted with ‘fitting my wife up’: being able to laugh our way through this exercise is a sure sign of our closeness.   Not a bad start to the morning for any alpha male, who is coming to the end of his seventh decade!

The need to return gear provided me with an opportunity for both a bit of ‘me time’ and fun.  Maureen wanted to do her housework as I skipped into Grimsby, once again, to search for suitable undies.  Fortunately, Dawn my friendly assistant from a couple of days ago was on hand and once again and help me understand the complexities of band and cup sizes.  My female friends on Talking Point have also given me Distance Learning on that front. Once again i came away with prospective purchases, that have good potential to provide support and coverage – only time will tell.

This ongoing search for additional clothing has several bonuses.  It has given us both the confidence that Maureen does not need ‘baby sitting’.  It is obvious that her reluctance to accompany me into town is not being lazy or avoiding social contact.  This was clear when I returned home after an hour or so.  Music was being played and Maureen was singing while she worked: all normal stuff replicating her earlier life as a housewife.  What a move on from fear of being left by herself and not knowing how to fill her time.

Another bonus is that Maureen recognises I am trying to help her.  She is extremely grateful that I am attempting to solve the underwear shortage and  have some understanding of her difficulties.

Finally, I had some fun on my mission.  The women in the Superstore could not have been more helpful as they coached me through the complexities of firm support.  We joked as they tried to help me to to understand the struggle that lots of women have finding suitable attire.

Some have argued that it is no longer safe to leave Maureen to her own devices.  I consider that my present approach has been risk assessed and tested.  It enables me to have bits of ‘me time’ where my care giving role gives me access to all sorts of areas that men often fear to trespass.   My advice to all those who have to tread this path is not to be nervous as there is always lots of support at hand.

Dementia: The Importance of Cunning Plans

General

I am slowly learning that you have to plan in a cunning way when dementia is around.  Things need to happen on the hoof almost stumble into place.  Last night when I picked my wife up following her wander things went really well.

After I cajoled M into the car I suggested visiting a relative.  M’s Aunty is not much older than her and you could take them for sisters.  A lovely woman who ‘can’t half yarn’, as they say round here.  So a visit usually brings you up to date with the latest trials and tribulations in her life.  It would be unfair not to mention that she has looked after her husband for 15 years until the last few weeks until it became too much.  His Alzheimer’s disease had reached the stage where a Nursing Home was the safest option for all concerned.  So there had been some reluctance to visit, from both of us, as we faced the prospect of leaving with our ears burning once again.

We stayed and chatted for a while to learn of the latest traumas.  C is having a hard time at the moment and some of her tales are haunting as she tries to adjust to her new life.  As we were leaving I suggested going out for a snack together and we all decided to go for it.

I made for a local pub which we had not visited for some time.  We had a lovely time: once the girls got going I couldn’t get a word in edge ways.  They share so many happy memories it is a pleasure to hear them chat over the good old days.  The food was incidental and nothing to write home about.  There are lessons to learn from the lovely evening that we had together.

Sometimes, I almost forget that my wife has dementia and the constant burden that represents to her.  I forget that any planned situation can bring up anxieties about all sorts of things.  It now seems worth springing things on her as if they just dropped out of the sky, rather than talking about what we might do in the future.  It is possible that this is the way to visit family close by.  We might just be out in the car one day and suddenly arrive in Nottingham on the doorstep of her brother and sister.  Time will tell if this Cunning Plan might just do the trick.