Dementia: Musical Reminders

General

I tend to use music in all sorts of ways since dementia has been the elephant in our lives.  YouTube is a great bonus as any ‘Rave From the Grave’ is at my fingertips.  It suddenly struck me this morning that two of Dusty Springfield’s numbers give a musical interpretation of how things are at the moment.

Maureen has been crying this morning because she says she doesn’t know what she is going to do today.  Any self-respecting pop picker will know that one:  I Just Don’t Know What To Do With Myself.  This seems to be a common theme with dementia; not knowing how to fill time.  Simple solution here for the carer – suggest an opening gambit for the day and move on from there.

The other issue where Dusty again comes to my rescue to outline a theme is: I Only Want To Be With You.  I may be playing on words her because the reality is that Maureen only wants me to be with her.  Dementia makes people possessive:  I have seen that with my mum, who also has dementia. The looks she gives me when I give my attention to someone else in the Care Home could kill.

It is fairly easy to accommodate the first issue by creating a ‘To Do List’, so I leave an untidy kitchen for Maureen’s attention on many occasions .  The second is something I just have to live with and guard against.  Come to think of it  Willie Nelson can always help me out on that one.  All I have to do is call up Willie; start a slow dance and all will be well.

Dementia: A Master Class

General,

Yesterday I attended a Master Class in how to respond to someone with dementia.  During the evening we called in to see Clarice to hear how Dennis was following his return from hospital to his Care Home.  I had already sought a progress report from their son, so there would be no real surprises in store.

Clarice never faltered in her support to Maureen during the half an hour or so we were in her company.  If I had been able to video her performance we would have had some excellent training material on our hands.  She maintained a compassionate response to all Maureen’s questions; even when they had been asked several times.  Never once did she show any impatience as Maureen demonstrated that she simply could not grasp developments of the last couple of days.

Just to put matters into context Dennis is now on end of life care.  He has been discharged from hospital with a terminal diagnosis.  A District Nurse will  call at his Care Home to keep him comfortable: at 97 he is worn out and his life is drawing to a close.  Despite Clarice’s gentle performance it was clear that Maureen had little idea where he was or the severity of his condition.

It is not surprising that Clarice was able to deliver a Master Class: she has cared for Dennis for 15 years.  We have popped round to see them on many occasions and seen the progression of Alzheimer’s disease first hand.  I am not sure how Clarice has coped with something akin to a marathon of caring.  I have often looked at what she has dealt with day after day and shuddered.

Clarice has been something of a mentor to me in my approach to caring for Maureen.  Like myself she spotted signs of dementia well before others accepted there were worrying signs on the memory front.  Even in what might be seen as her darkest hour her support to Maureen was first class.  She has always had a soft spot for Maureen and her love for her niece has never been in question.  The other thing she has is experience of living with dementia; being on call 24/7.   That is why she was able to deliver a Master Class in how to interact with someone with dementia – despite her own harrowing experiences of the last couple of days.

Dementia: Time To Sort Out My Sleep Pattern

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This early morning awakening of mine needs sorting out.  I often wake around 3 or 4 in the morning  and find it difficult to get back to sleep.  This means that I feel washed out for most of the day and constantly hungry.  None of this is helpful to my caring role.  If I doze off Maureen might have taken herself off for a walk and I then have an anxious time trying to find her.

I have had periods like this before many times in my life.  Exhaustion can lead to lowering mood and that is the last thing I need at the moment.  I need to be on good form if I am to provide informed support to my wife.  Unfortunately, none of my normal strategies for bringing my sleep pattern under control have helped at the moment.  Some new Ideas have come from Talking Point and I will have a look at these in the next few days.

For the next few days I am going to reduce the time I spend on my computer and all other gadgets.  I am also going to resume Tai Chi and meditation.  So it will be a quieter spell on this Blog for a while:  I have to concentrate on improving  my sleep pattern.

Dementia: Looking Ahead

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Lots of people advocate ‘Going With the Flow’ when dementia is resident in your home.  I’m not particularly fond of his phrase as it is jargon that stems from political correctness.  I much prefer: ‘Fail to Plan: Plan to Fail’ and often resort to GIGO as a tool as analysis when things go wrong.  In short if my input is Garbage the response from Maureen will reflect the quality of my intervention and I will get Garbage in return.

We didn’t make it to give Clarice any support yesterday and have no idea of developments during the night.  Maureen has woken this morning wanting to ‘get away from here’.  Not an unusual theme for her on waking up: perhaps intensified by her ‘flight’ mentality.  Maureen has tended to ‘flight’ rather than ‘fight’ throughout her life.  She has often ran away or hidden bad news from the press (family members).  There is no need for the sake of this blog to give such personal detail but running away has left haunting memories that continue to surface with dementia.  There is lots of stuff that she has never dealt with and never will.

Maureen is unsure of the best way to support a woman who is close enough emotionally, and in age, to be a sister.  She is a little confused about her uncle’s condition.  On occasions she forgets that his Alzheimer’s has progressed to the stage where Clarice could no longer meet his care needs.  My understanding of his current condition is that he will need to remain in hospital or return to his Care Home to be kept comfortable.  His life is drawing to a close.

None of this is going to be easy for Maureen.  She is still grieving for the untimely passing of her daughter.  Her dementia means that she is not really sure of what is happening to Dennis and how she can help.  Her predisposition is to run away and that is driving her approach to dementia.  There is nowhere for Maureen to run any more and that is really hard for her to deal with.

Dementia: Sharing Bad News

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I am not sure if I have just broken one of my golden rules: not to share any bad news with Maureen.  It is something I tell all and sundry; to avoid her dwelling on negatives.  I have just taken a risk as this is something she can do something about.  Her Aunty is alone and stressed a few streets away while her husband lies very ill in a hospital bed.

I had thought of not putting Maureen in the picture following a phone call half an hour ago.  Then I reconsidered that as her Aunty is like a sister to her, that she would want to know.  Perhaps sharing bad news that she can do something about is different to just having angst dumped in her lap.  Only time will tell if I have got this one right.  I certainly hope so.

Dementia: Managing Energy Levels

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I expected Maureen to be tired today after our visit from my eldest daughter and her family yesterday .  Having four additional people in the house is bound to have a latent impact on any couple whose combined ages exceed 145 years.  If you add the stroke, and dementia, into the equation it is perfectly understandable that Maureen has ‘rested her eyes’ several times today.  She is currently on the bed for her third siesta of the day.

We were warned that there would be ‘duvet days’ following stroke.   Any injured brain takes longer to process and tiredness is an inevitable consequence.  Therefore, I supported her declining an invitation to spend time with a relative today.  Particularly as the person concerned always has tales to tell.    Her stories would have been many today; with her husband recently in a Care Home.  I will phone her shortly and explain our need to have had a quiet day.

It is possible that it will take Maureen a couple of days to recover from Lisa’s visit.  Watching two delightful young children enjoy their day at the sea side was a joy.  Observing two young girls, full of fun, is a laugh a minute but it makes you feel your age.  As we often say it is a joy to see family but sometimes a relief when we are waving them off on their homeward journey.  At our age  it is always a relief to know that  we can ‘rest our eyes’, for a while, shortly after bidding them farewell.

Dementia: The Happy Wanderer

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It has taken me a while to let go and not keep Maureen under constant surveillance.  I suppose it has been natural to err on the side of caution when someone has had stroke leaving them with dementia and 50% peripheral vision loss.  At first i panicked when Maureen went missing the first a couple of times and heeded to call to almost ‘lock her in’.  In the last couple of weeks or so I have taken a more liberal approach to going out by herself.

I need to praise the wisdom of Yvonna my chemist confidant in helping me to adopt a revised approach to Maureen’s presentation..  Her advice to see Maureen as someone recovering from stroke; rather than focus on her shortcomings has been really helpful.  So when I find Maureen has gone on walkabouts I no longer panic and reach for the phone to report her missing.  This morning has been a classic example of my revised approach.

I returned downstairs after checking up on the latest exchanges on Talking Point to find Maureen gone. After making the house secure I fired up the car to begin my search around the local streets.  My first trawl around her usual routes was uneventful.  I eventually spotted her, within a few minutes, on her way in the direction of home.  She soon jumped in beside me and we returned home together.

Maureen waved at a passing car on our return journey to our house.  She is convinced that she is under surveillance when she is out for a stroll, with police monitoring her safety.  On this occasion she was walking in her slippers as she said they were to hand when she decide to go out.  The rest of her attire would not have been out of place for anyone walking the local streets.

Maureen loves walking and follows advice to take regular exercise.  We have a laugh about my ability to track her down. Such arrangements may not be risk averse but they appear to fit the bill at this point in time.  Like all things with this condition there is no room for complacency and the daily challenges with dementia mean that things always need to be kept under review.

DAI Tribute to Dr Richard Taylor

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Tribute to Dr Richard Taylor a real loss to us all.

Kate Swaffer (she/her) Kaurna Country's avatar

Sharing the Dementia Alliance International EULOGY AND TRIBUTES TO RICHARD TAYLOR PHD with you today. Follow the link to view the recording, and read the personal messages in full, many of which were read out during the service.

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Dementia: Frightened of Being Alone

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There are lots of aspects of dementia that would be fascinating if the subject matter was not your own wife.  One recurring pattern of behaviour that needs exploration is fears of being left alone; even being abandoned.  At this stage on my learning curve I am interested in speculating on the root of these fears.  I am hoping that a clearer understanding of the condition will help me to make more informed responses to Maureen’s presentation.

It is not unusual for Maureen to wake up in the morning, or after a nap, very agitated because she fears she has been left alone.  As I have mentioned before my early morning wakening means that I have often left the marital bed when the dawn chorus is still underway.   This is nothing new and should be something that Maureen has got used to by now.  So being alone in bed in the morning is normal for her in this household.   It would also not be unusual for me to be pottering about, as she has one of her many naps on the sofa throughout the day.  What is fairly typical is her response when she wakes up.

Generally, Maureen is almost in panic when she wakes after a period of sleep.  Her anxieties take on a number of perspectives.  Primarily, there are fears that she is alone: that we have all gone out and left her to her own devices.  This is typified by something like this: ‘ I wondered where everybody had gone?’  It is rare that she grasps there are just the two of us here.

On other occasions she will wake and be concerned that she is late for something; typically school.  At first I thought this was the school she worked in, then it dawned on me it was her own secondary school.  I only twigged this when she mentioned that her uniform might not be dry.  So I add two and two together and link this with ‘wanting her mum in the morning’: the one person who could help her find the things she needs.

I could speculate forever and never be sure of what is behind any aspect of Maureen’s presentation.  Many have written that ‘time travelling’ take place and those with dementia are unsure of where they are in their life cycle.  Sometimes I wonder if this fear of being alone is an understandable response to how people with dementia are treated following diagnosis.  Being abandoned sums it up as well as anything I can come up with.  Preparing for decline and a slow death are a much harder interpretation of  the normal treatment plan.

So I am left with a 100 Million Dollar Question is this fear of being alone nature, nurture or dementia?  Perhaps we will never know so best try to stay in bed longer and continue to try to come up with lots of ways to minimise distress.

Dementia: The Importance of Compassionate Care Calls

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It’s very easy to become overwhelmed when dementia is an unwelcome guest in your life.  In my haste to post on other matters yesterday I almost forgot the contribution of our ‘adopted daughter’, Chloe.  I am pretty good at moaning about the difficulties in life and taking the positives for granted.  However, if I am to run with my New Year’s Resolution this post has to be about Girl Monday and Friday.

Her performance yesterday gives an idea of the benefit of our adoption.  She arrived at 10 ‘o’ clock with Maureen still in bed.  As always she asked me how things had been going since her last call on Monday.  When I told her what has been going on she helped me to understand Maureen’c current presentation.  She has a wealth of experience, caring for clients who have dementia, and is always willing to share her insight into the condition.  Her understanding of  Maureen is exceptional  and she knows when to cajole and when to back off.

Yesterday when I returned from shopping Maureen had showered and washed her hair.  A major accomplishment with someone who can insist that she showers and washes her own hair regularly.  The reality being that since stroke it is not simple for Maureen to feel safe in the shower cubicle; particularly on her own.  Chloe had also got Maureen to try on new underwear and they had agreed that the purchases of your truly were not satisfactory.

Caring for someone with dementia requires a steep learning curve.  To have an ‘in house tutor’ on hand who knows her the condition, and Maureen, is worth its weight in gold.  The thought that Chloe will be here on Monday’s and Friday’s is one of my saving graces when the going gets tough.  I would recommend any family with dementia the unwanted guest in their lives to go for the three C’s of Compassionate Care Calls.  We are very fortunate that we have four here with Chloe.