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Dementia: Avoiding Carer Burnout

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When I saw my G P yesterday he assured me that he didn’t suspect anything sinister in my symptoms.  He also advised me to: ‘take one day at a time’.   I have a great deal of repect for Dr Sibtain for his support to me; as a patient, and in my role as Facilitator of the Practice’s Anxiety and Depression Group.  So I take his advice very seriously, and wonder if it is similar to: ‘going with the flow’.  However, I am not comforable with what appears to be behind either of these approaches: an unhelpful medical model.

I believe that there is room for a psycho-social approach to dementia.  One that offers hope: rather than watching decline. Sitting back and going with the flow, by taking one day at a time, has never been a way I have approached life.  Any perusal of my C V would indicate involvement in initiatives to bring about change.  I see no reason to adopt any other approach to my role as Care Partner to Maureen. The challenge I now face is to modify my psycho-social model, so that the potential for burn-out is reduced.

Some form of respite has to be an immediate priority.  Again my approach may be unconventional but our Nottingham experience  supports my assertion that a progressive approach to respite has untold benefits.  That doesn’t mean that Maureen and I have to be joined at the hip.  But leaving her in the company of strangers while I ‘hop off’ for a couple of days is not an option.  My plans for the coming weekend may have  to be revised based on the information I received from our social worker yesterday.   It seems that there are no familar faces available for the weekend.  So urgent discussions will need to  take place today, to try to fathom a supportive way forward.

Some have argued that I am a victim of my driven approach to being a Care Partner.  It is possible that I need to review my approach to supporting Maureen.  I am hoping the 7 tricks reproduced from an article in Alz Live will help to modify my approach and improve our journey from now on :

‘How one smart cookie demonstrates 7 tricks to smoothe communication, when offering tea.

10:30 sharp. Green cup with the cracked glaze. Half teaspoon sugar, half teaspoon Equal. That’s how Miss Johnson takes her tea every morning.

When someone suffers from Alzheimer’s disease, there are a million potential obstacles that can turn simple daily rituals like this one into a real challenge for caregivers.

I thought it would be helpful to look at the ins and outs of caregiving through the lens of a daily ritual, to keep something as harmless as morning tea from growing into a monumental exercise in frustration.

Gale Storm, a nurse and manager of education for home health aides at Partners in Care, where I work, offers this compassionate rendition of how a caregiver might smoothly and successfully begin the daily tea ritual:

The Scene

Miss Johnson [name changed], I’ve been with you for two weeks as your home health aide.

I’m Sandy. You remember.

I notice you like your tea at 10:30, in this green cup. I think I can get the sugar-and-Equal amounts right. Is that how you’d like it this morning?

The Takeaway

Tucked into this simple exchange (which very few of us in the crossfire of caregiving will ever get perfect) are seven tricks of the trade.

Sometimes the other person needs time to think … You don’t have to fill all the silences.

1. Emphasize familiarity.

I’m Sandy, I visit you every day… Take every opportunity to reorient the client or loved one to person, place and time. This breeds familiarity and a sense of safety, paramount to a person with dementia. Even with a family member, a dementia patient benefits from simple reminders.

2. Be observant.

In the conversation about Miss Johnson’s tea, the aide introduced the morning ritual by saying, “I notice.” Because familiarity can soften the agitation of dementia, successful caregiving depends on careful observation. Observe favorite foods so you can maintain a successful menu. By the same token, observe whether the person you’re caring for prefers variety in day-to-day meals.

3. Practice good communication.

Active listening and touching on different points can be helpful as a conversation loops around again and again. Clarification and rewording the question go a long way, too. It helps to remember that you can pause in the course of conversation as well. “Sometimes the other person needs time to think,” says Gale Storm. “So give them that chance. You don’t have to fill all the silences.”

4. Seek input.

Asking for your loved one’s input helps foster engagement and dignity. Give suggestions — It’s 84 degrees and humid, so let’s wear short sleeves — but let the elder have a say in which shirt, which light skirt.

5. Let go of expectations.

Gale points out that just because Miss Johnson has had her tea this way every morning for two weeks does not mean she will want it that way today. Alzheimer’s is a disease that keeps confounding expectations. Levels of memory loss and lucidity can fluctuate greatly.

6. Be aware of your tone and facial expressions.

He or she will always respond to tone of voice or facial expression — the very things a well-meaning but stressed caregiver might overlook. Even if you have to fake it till you make it, try to keep an encouraging tone to your voice and smile.

7. Know when to walk away.

If a situation has become combative or overwhelming, take a deep breath and step away (making sure the situation is safe to leave, of course). As Gale notes, “Taking three minutes to go into the rest room is a perfectly reasonable thing to do.”

Marki Flannery, who wrote this piece, is president of Partners in Care, the largest licensed home care services agency in the greater New York City area. This feature was originally posted on Huffington Post.’ 

 If I keep these 7 points in mind they may help to reduce the chances of Burnout.  There also needs to be a progressive approach to respite at the weekend, to avoid Maureen being left with strangers.

Dementia: Musical Magic

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It is clear that music is a good way of providing cognitive stimulation for Maureen.  On Monday it made a good start to her day:  taking some of the sting out of the search for comfortable clothing.  In the evening she sang like a lark to some of her old records.  So I repeated the early morning routine today, and plan to have a musical evening tonight after tea.

I can hear Maureen singing away as I type this entry to my blog.  As I have said before she is a ‘home bird’ and attending events like ‘Singing For the Brain’ are not her cup of tea.  My approach to integrating individual cognitive stimulation, has to have advantages over sitting down with others for an hour or two once a week.   As I have blogged before Maureen prefers IICST to ICST.  I do not understand why the typical approach to dementia is pulling people together in all sorts of groups.  Cognitive stimulation begins at home: it should be integrated into daily living.

Tomorrow I hope to develop our musical interludes even further.  I think it is possible to build all sorts of other stimulating activities around music.   More detail tomorrow as I’m in a bit of a rush, as I have to see my G P at noon.

Dementia: ‘Our Own Peculiar Way’

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We all have our own ways of coping when dementia is impacting upon our lives.  Maureen’s approach to the condition is her choice: it is her life.  If she wants to continue with her belief that she: ‘used to have some problems with her memory’; that is her right.  What would I gain by trying to ram home that she has dementia, and she should listen to the ‘experts’ on how to conduct her life?  Kate Swaffer has some harsh words on that approach and labels it ‘prescribed disengagement’.

I also have my own approach to being a Care Partner.  It has been fashioned by reading and listening to what others have to say about the condition.  I am greatly indebted to the many contributors to Talking Point who share their experiences so openly: they are the experts.

So Maureen and I both have our own approach to our journey with dementia.  That is where Willie Nelson and EmmLou Harris come in because their rendition of ‘My Own Peculiar Way’ opens the door on a good focus for the weekend, and these dark nights.

If my ballroom dancing memory serves me right Willie and EmmyLou are singing to the tempo of a Rumba.  Maureen and I fashioned a good version of Rumba in our ballroom dancing days.  As I have mentioned before we have several ‘dance floors’ in the house.  We also have DVD’s to remind us of our little routines.  Guess what I will be suggesting to shorten these dark nights?

What have we to lose by continuing in our own peculiar way?

Dementia: We Need A Holiday

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We would both benefit from a Winter Sun holiday.   This would be another step towards normality, as we continue our journey with dementia.

Christmas is always a tricky time when divorcees get together.  It is difficult for the extended families to know who to invite, or visit, over the festive period.  We have often solved such difficulties by flying off to Portugal, to spend a couple of weeks lapping up the warmth, and being waited upon.  I am just wondering if we could make it again this year?

We haven’t had a holiday together since Maureen’s stroke.  It was not safe for Maureen to make the trip we had booked in 2014, because it was so close to her stroke.  So Maureen’s family were kind enough to come to my rescue, so I could accompany two of my daughter’s to our favourite haunt – Albufeira.  I am wondering if the two of us could make it this time round?

Maureen has given mixed responses to any suggestions of flying off abroad.  She often talks of not liking flying, and delays at airports.  Then she will talk positively about the benefits of a hotel in the sun.  I think it is time to try to ‘push the boat out’ on this one.

Passport renewal is a sensible staring point.  This will open the debate and deal with one of the practicalities.  I need to accept her anxieties about flying off, and the tensions associated with preparation for a holiday.  However, on these dark mornings with the nights drawing in; we need to focus on something positive to mitigate the impending doom and gloom.  I’m sure you will be hearing more on this ………

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: Time To Become A Whistleblower

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The time has arrived to become a whistleblower on the approach to dementia that we have experienced.  It is bad enough for diagnosis to be so long winded.  Then Maureen has been discharged from the Memory Service as her condition is untreatable.  Little point in dwelling over the disagreement over diagnosis: I have already referred to that in earlier blogs.  Where the Image result for Blowing the whistle graphicwhistle has to be blown is on what has followed; particularly from social services.

This is far from a personal attack on an individual: I have already blogged on Mission Impossible.  This is me being open about the Exocet I now need to fire to attempt to bring some sanity into the situation here.

It appears that there might well be both cultural, and systemic, problems within social services.  There may also be questions about capacity and resources. Nevertheless, from what we have seen there is little sense in what is going on at the moment.  You just wonder with economic austerity being predominant in this country why we continue to spend public money on the type of charade that I am about to outline.

I had alerted social services to the fact that my mission is now becoming impossible.  Maureen’s presentation has changed and is putting  her welfare, and my health, at risk.  More support is needed from paid carers.  The response from social services is bewildering.

Our social worker called last week: she stayed for a couple of hours chatting to Maureen.   Why two hours you might ask?  After all the client has dementia and a very limited concentration span.  The outcome of her vist: zilch; absolutely nothing in terms of additional support.

So a social worker spends a couple of hours on the sofa and we are left to get on with it.  Questions about the purpose of her visit have to be raised.  Maureen’s presentation remains the same.  In fact, the immediate impact of the visit was to increase her distress and fears.

I have appointments arranged to meet Senior Officers from the Clinical Commissioning Group and social services in the coming weeks.   I intend to question whether their services are be fit for purpose.  I now hope to bring those meetings forward.  I just wonder where a ‘duty of care’ under the new Care Act figures in all of this?

Dementia: Becoming A Better Care Partner

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As a Care Partner it is easy to look around and point the finger at what others could be doing a little better.  That is simple and anyone can do that all day long.   What is a little more challenging is to look at your performance as a Care Partner and see if you can sharpen up your act.  This is not a Sunday confession session, it is an attempt to list a few things that might just make our journey with dementia a little easier for us both.

The point of departure is an acceptance that Maureen’s dementia is progressing .  Confusion, distress and fear are now predominamt in her presentation.  What follows is a list of things I can do to help us as we travel this road:

  • To attempt to understand Maureen’s reality
  • To attempt to help others to understand Maureen’s reality
  • To listen rather than talk
  • To use simple language and short sentences
  • To stick to one subject at a time
  • To be visible as much as possible
  • To keep the house tidy
  • To have set places for things
  • To pare down Maureen’s clothes even further
  • To attempt to keep Maureen in a positive state of mind
  • To find meaningful activities
  • To socialise in appropriate circles
  • To accept that Maureen’s world is shrinking
  • To try to secure an appropriate Care Package
  • To continue to utilise skills and knowledge within relevant reference groups

I am hoping to blog later in the day on Maureen’s reality.  It depends on how the day progresses.

Dementia: Taking Control

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One area in which I can take control is the home environment.  Maureen often thinks she is either in her Aunties house or  a Care Home as she doesn’t think she lives here.  That doesn’t really matter.  What I have to do is to make our home more dementia friendly to make life easier for both of us.  Sorting out Maureen’s clothes so she is not overwhelmed by choice can only help.

Yesterday afternoon was a very distressing experience for me.  Maureen has loads of clothes and turns out every day in her blue joggers and a choice of a few of T Shirts.  There are also couple of cardigans she wears and that is about it.   So while she had a late afternoon doze yesterday I pared down her wardrobe a little further.  There are now two further bags of clothes for the charity shop.  The whole process was upsetting, as most of the items brought back happy memories of times and places.

I just had to do something practical yesterday to try to move things forward.  Even more inertia from social services yesterday suggesting a visit but not able to confirm.  I just wonder what it will take for them to move on the need for more support here and a Carers’ Assessment .  I wonder if they wait until Care Partners collapse in a heap before they move themselves?

One real positive from yesterday.  Our new kid on the block, Rosie, shone once gain.  Her and Maureen have really hit it off and my task is clear: to nab her for some weekend sits when she starts University in a couple of weeks.  All of this would be easier if social services would let go of the reigns and let me take control.  I do not understand what their procrastination is all about.  I am beginning to wonder if there are systemic problems that mean they simply lack the capacity to give a worn out old Care Partner the support he desperately needs.

Dementia is not cancer

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I find George’s blog very thought provoking. He articulates my own thoughts on how dementia is treated in this country. The challenge for me is how to help Maureen and I to have a life with dementia in this climate. I will address that issue in Monday’s blog. My method will be quite simple; to develop an Action Plan as a Care Partner.

georgerook51's avatargeorge rook

People with an early, timely diagnosis of dementia have time to make the best of their lives. They can plan finances, power of attorney, a care and living plan…

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Then what?

There is still precious little support provided across the country post diagnosis, until crisis.

Many providers and councils say they provide care co-ordinators for all people with a diagnosis of dementia. But we know they usually don’t. (Initial findings of a survey by ADASS in the West Midlands). There are a few proud exemplars, far between.

There are excellent peer groups scattered across most areas but few people with dementia get to them.

People with dementia, and remember it can happen young, are generally left to their own devices. They lose jobs. They meditate on their forthcoming decline. They become depressed. They lose social contact and community interaction. They may descend into living with misery.

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Yes, we talk about…

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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: