Category Archives: General

Dementia: In House Cognitive Stimulation

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Any reader of this blog might think this guy has a lot to say for himself but what does he really know about dementia?  So I will spell it out:  I have read a bit and been fortunate to have made contact people who have some ‘know how’ in this field. I have extolled the virtues of Talking Point many times on this blog; those who post on that Site are the real experts.  They have lived dementia 24/7 and their expertise is ground in experience.  Somewhat different from popping to help for the odd hour or two or attending a training course.  Yes you might say ‘smart guy’ that you but are what are you actually doing that  is worth writing about?

I think my approach to ‘in house cognitive stimulation’ is worth writing about.  Just a bit of detail gives a flavour of what I am about.  Maureen is in good form this morning up early and lucid.  She has been helping me in the garden before breakfast.  Our small vegetable patch is been transformed in preparation for Autumn.  Her planning skills have been paramount in the adjustments we have made in an attempt to maximise crops.

Boyzone have been on in the background as we have been ‘farming’ as we call it.  Mike my neighbour popped his head over the fence and we chatted to him about Circuit Training in the garden.   We told him of our wild ideas to open up our facilities to paying guests.  As we ate breakfast Rhonan and the Boys sang Love Me For A Reason and I mimed the words and danced around as the music rang out.

All of the above, and more, are on offer in some form or another on a daily basis.  Maureen does not need to join Groups or go to Day Centres.  Individual Cognitive Stimulation Therapy needs to take place in the home day after day.  Maureen will have a nap very soon and I expect she may forget the antics of the morning but ‘such fun’ as Miranda’s mother used to say!

Worrying about people with dementia

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Kate always says it as it is. Her Blog today sums up so many of the feelings I have about my role as a primary care giver. Although I have to say I like Kate’s term of ‘care partner’ better and will use it from now on.

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

Image source: www.seashell.com.au via googleimages.com Image source: http://www.seashell.com.au via googleimages.com

Worrying is normal for the person living alongside a person with dementia, and as a family care partner or support person for a few people who have died from dementia I understand too well how difficult it is not to worry. When you love someone, and they are sick or troubled, not only do you want to support and help them, you worry about them. All very normal.

What happens too often though, in the carer role of the person with dementia – paid service provider or a family/friend support person – is that the their worry can become the catalyst for taking away our life and our rights.

It is an important statement to make, and the catalyst for this blog. Too often in the caring role, paid and unpaid, we do things in the ‘persons best interests’, or to remove the danger of litigation…

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Dementia: Time For Straight Talking

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The time for beating about the bush with Maureen’s dementia has long gone.  It is now time for some straight talking in all quarters.  First of all the mix up of diagnosis needs to be straightened out: there needs to be a consensus on mixed or vascular dementia.  Then there needs top be clarity over the deal on the table from social services.  No care partner should be expected to soldier on in the current vacuum.

I need to bite the bullet  and end the prevarication and mystique that is totally frustrating.   Social services may need to conduct their own assessment of Maureen’s capacity to satisfy their own masters.  That is there business.   If they need to go forward on a ‘best interest’ basis so be it.  However, I wonder how I figure in their plans?  What about my best interests?

My feeling is that primary care givers are left to get on with it until they call time on their deal.  That is what I am about to do.  I hope I do not have to repeat my tactic of a few weeks ago when I threatened to abandon Maureen unless social services ‘pulled there socks up’.  I won’t go into detail here to protect the guilty but my goodness me their incompetence drove me to taking extreme action.  Then they failed to impress when under just a little pressure.

So the time for straight talking, and honesty, all round has arrived.  I am quite happy to honour my marriage vows: ‘until death do us part’.  That does not mean I have to ‘forget about me’ as: a son, father, brother, grandparent  and a person in my own right.

Dementia: Improvised Circuit Training

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Featured imageMaureen has taken her doctors advice very seriously.  He advised her that walking would be an excellent way of addressing the discomfort she feels in her left leg following stroke.  The photograph on the right shows you a familiar route that she follows several times a day.

She has developed a little circuit around our rear garden that she often pops out to several times a day to walk around.  I noticed the other day that she uses the washing line to hold onto as she walks on her circuit.

Today she introduced a further exercise into her routine.   She is toning up her quads by doing step ups on the elevated slab outside our rear door.   I am amazed how she is using different parts of the garden to vary her routine.  Really positive examples of her ability to plan and improvise.  She is trying so hard to do everything she can to help her recovery from stroke.  I think the bench  may  come into play at some stage, although she is fond of sunbathing  on that.

Maureen has never been a prospective member of a gym.   Working out in her own back garden suits her fine and gives her the opportunity to improvise.   This afternoon she introduced another refinement to her workout.  She opened the patio doors and put music on the CD Player.  As she said marching around the garden is great fun and the neighbours are used to us around here.

I am just wondering if I can persuade her to join me on the beach early one of these mornings, to see the sun rising over the Humber.  A bit of Tai Chi as the sun rises might stimulate her brain cells even further.

Just one look at the photo below should be all I need to get her down there one of these mornings.

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Dementia: Preparing for A Carer’s Assessment

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It is still unclear to me what any carer is entitled to In North East Lincolnshire.  We had a generous Care Plan when Maureen came out of hospital following stroke.  I believe the usual arrangements in this are are to offer a 6 week package. Within a couple of weeks we said we didn’t need the early morning, and evening calls, as Maureen has never needed personal care.  Later on we reduced things even further to the current arrangements of 3 hours on Monday, Wednesday and Friday mornings.

In the early days I heeded advice to ‘skid addle’ as soon as a carer arrived.  With take your ‘me time’ as my mantra I followed all sorts of pursuits.  Lately I have let some of my regular hobbies fall by the wayside, in response to the dynamic nature of things here.  As Maureen’s presentation has changed I have played it by ear to provide support to my wife and carers.  Things got particularly difficult a month or so ago when Chloe, one of our regulars carers, went off for a three week period on honeymoon.  Now that our ‘adopted daughter’ is back it is time to review the best way forward.

It is clear that Maureen has responded well to me being around more.  It must have been awful for her to think i couldn’t wait to get away as soon as a knock came on the door and a carer clocked in.  In retrospect I played that one badly. Panicking when Maureen has taken herself off for a stroll has also not helped.  The scars from these tactical errors remain and are evident from Maureen’s ongoing dialogue about: ‘feeling like a prisoner here’.

I would contend that after a dodgy performance in the last few months there is room for optimism on a number of fronts. Maureen’s mood at the moment is fine and we are having lots of fun together.  She enjoys, and jokingly moans about, her household duties: ‘I am not going to run a Guest house again’; is how she might put it.  Perhaps, a reference to helping her grandmother here over 60 years ago.  However, as she puts it: ‘if I don’t continue to do stuff around the house i will have nothing to do and forget how to keep the house clean and tidy’.

I am a little nervous about what lies ahead.  It must be really difficult for any social worker to assess Maureen’s presentation.  They are likely to see the ‘hostess mode’: Maureen at her best to prevent them ‘locking her away because she is mad’.   The other factor that has to be overcome is the implications of the new Care Act.  It is also possible that dwindling Local Authority resources will mean that finances are a significant factor in the support on offer.  It is not easy to establish what we are entitled to under new arrangements for supporting Care Plans.

So there is some hard thinking, and talking, to take place over the next couple of weeks.  Maureen does not need ‘baby sitting’ as she puts it: she continues to make remarkable progress following stroke.  We are hindered in all of this by dementia being placed under Mental Health rather than Brain Injury.  Therefore suggestions about Day Centres, Clubs and the like are unhelpful.  We are a married couple who remain close: we do most things together.  All that needs sorting out is the best way for me to be a little more than a caregiver.  This requires some clear thinking about best way to support Maureen; when she wants to stay at home, rather than join me on my travels or in various pursuits.

Dementia: Musical Reminders

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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

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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.