Tag Archives: Better Practise

Dementia: Getting To Know You

There are two reasons why Charlotte and Maureen hit it off so well over the weekend.  Firstly, Charlotte understands dementia, and gave Maureen the time and space to settle in her company. Secondly, I stayed around to help ease Charlotte into working with us.

In retropsect I think we came up with an excellent approach to a carer’s first visit. I deliberately stayed in the background early doors.  Looking out of the kitchen window, I saw that the two of them hit it off from the moment they met.  Within minutes smiles, and laughter, rang out around the garden, as the remaining washing was placed on the line.

As the morning progressed I left Maureen to tell Charlotte her story.  I also opportunistically used events to help Charlotte see Maureens functional capacity first hand.  Maureen approach to trying to find my missing antbiotics gave Charlotte direct evidence of Maureen’s cognitive function.

I don’t think Charlotte had time to read Maureen’s outdated Care Plan.  I deliberately threw her in at the deep end, and helped her to stay afloat.  On many occasions over the weekend, I saw her take opprotunities to encourage Maureen to open up.  I overheard her using the photographs, on the wall in the dining room, to encourage Maureen to talk about her family.

I would suggest that my ad hoc induction process, and I have only shared part of it, hit the spot.  It was far more effective than any written document created by me, or whoever.   Charlotte knows far more about Maureen than professionals who have been coming here for quite some time.  In the short time she was with us she cajoled Maureen to tell ‘her side of the story’.  It is rather sad that her senior role within the Agency may mean that we may not always enjoy her company.  However, I have feeling that her brand of care will be replicated throughout the Agency.

Dementia: We’ve Scooped the Jackpot

Our luck came in yesterday and we’ve scooped the jackpot.  They say luck runs in threes so I decided to buy a ticket for the Lottery.  Yes and our lucky streak continued as soon as Charlotte walked through our door. Immediately, I realised that we had a winning ticket, to go along with the two very small wins Maureen had received in the past week or so.

I am very optimistic that we have a winning team in place now.  With Chloe,Gale and Charlotte here on a regular basis there is so much potential to move forward on our journey.  Once Charlotte is inducted into our approach to dementia, we are in a great position to make further progress.  Lo and behold Maureen has fed some great ideas into the melting pot this morning regarding my 70th birthday.

We are undecided on the best way to celebrate  the start of my 8th decade.  That uncertainty is a real positive, as it brings into play a little project that will be a means of providing cognitive stimulation.  Our tentative plans are for a scrap book approach on where to celebrate this milestone.  What better on these cold and dark nights than planning a holiday?

That lottery ticket remains in my wallet – unchecked.  We have already won with Charlotte on board, and Maureen progressing so well in the last few days.  Maureen is such a happy and positive woman at the moment, we must be doing something right: continuing in our own peculiar way.

Dementia: Continuing In Our Own Peculiar Way

I posted the  blog below – Our Own Perculair Way – two weeks ago.  A lot has happened in the last 14 days as Maureen continues to make amazing progress.  Early this morning she has been a revelation:  telling me how she is trying to improve her memory by recollecting events from the past.  It is amazing how lucid and funny she can be: her sense of humour is still wicked as you will see from my earlier post.  If you met Maureen in the street you would never believe what she has been through in the last few years.

Today will be an interesting test of her ability to recall.  If she remembers that we have been chatting about contacting our Songbird that will be really positive.  The experts might well question this, as I am dealing with her emotional memory.  Hey who cares as long as she enjoys speaking or writing to Maeve.

Our Own Peculiar Way

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: Cometh Hour; Cometh The Woman

It would not be possible to ask for any more support than I have been given this morning.  Social services have delivered quality support, at very short notice.  Their response to me being ill and unable to keep Maureen safe has been exceptional.

Tracey our social has to be singled out for real praise for her achievements this morning.  How on earth she persuaded Maureen to go to a Day Centre, I will never know.  We are hoping that Maureen will go along with the same arrangements tomorrow.

I have to hold my hand up here.  Tracey has been trying for persuade me  to let her take Maureen to a Day Centre for ages.  If only I’d been braver things could have been very different a long time ago.  There’s none so blind as those who cannot see.

Woops: spoke too soon Maureen is demanding to be brought home and I need to fetch her.  She has been very angry, and distressed, during the phone call I have just taken.  Better get off now!

Dementia: Musical Orientation

I think it is possible to use music to help Maureen sort out the time of day.  This should help to ground her when she  wakes up in the morning, and after a siesta.

When she wanted me to put Star on the other morning it helped ease her through getting dressed.  She seemed to find it easier to find comforable clothing after singing along to Christie Hennessy, and others on her list of requests.  It is simple to accommodate any music she fancies in the morning as YouTube is so close by.

My cunning plan in the evening is to use our record player.  It worked very well last night with lovely singing along to Barbra Streisand  I am hoping that our after tea ‘jammimg session’ will  bringing her back to earth in terms of time.  It also offers lot of other possibilites.

Our vinyl is all over the place and requires sorting.  So although I am going to be the D J it will be a ‘Request Show’: Maureen selects, and I will put on the  records.  That means she will have to trawl through L P’s that are in no particular order.  If I know my woman well she will eventually put the records into some sort of order.  Goodness knows what system she will use but I am fairly confident she will come up with something to simplify her searches in the future.

Most of this sounds ambitious but there is nothing to lose.  As a minimum if we run with music in the evening it will be a fun way of spending time.  Anything else that I can conjour up with  ‘Raves from the Grave’ has to be a bonus.  Just to take a ‘rain check’: Maureen mentoined that all her records are still at her parents house in Nottingham.  She has even forgotten that the place she is talking off fell a victim to redevelopment years ago.  Never mind let the music play!

Dementia: Avoiding Carer Burnout

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: Two Mothers Remembered

My sister, Barbara, kindly forwarded this beautiful poem to me today.  She has sent it at such a good time: as I will be with my mum on Saturday.  I am sure that sons could be substituted for daughters to convey the same sentiments.

I hope my mum still recognises me after all this time.  It is doubtful that my brother will but he did say my name the last time I visited hin in his Nursing Home.

It will be interesting to see how they respond to music: Frank Sinatra for mum; Bill Hayley for John.   Mum will tap her feet I’m sure but I don’t expect John will be able to show how good he was jiving.  I wonder if he would take his wife by the hand if I take her along?  There’s only one way to find out.

I’m really looking forward to seeing them both.

Poem: Two Mothers Remembered

Musicophilia and Dementia

Sometimes I manage to seize the moment and really good things happen here.  This morning Maureen was struggling, once again, to find clothes that she was comfortable in.  So I asked how I could help? and She said play Star by Kristie Hennessy for me.  Not a difficult task with YouTube available in the next room.  What followed was simply amazing.

Maureen sang along to what has become one of her favourite songs.  She then bet me I couldn’t find a Bing Crosby, then a Joan Baez number, and on it went.  The change in her mood was immediate and the problems of finding clothes became a distant memory.  I am now wondering how much more I can use music as a vehicle for positive change.

I have seen, with my own eyes, how music can lift mood.  I just have a sneaky feeling it can also provide cognitive stimulation and open new pathways in the brain.  I’d better get  that book out of the library: Musicophilia, that one of my friends recommended, and I never got round to reading.

Note: 

I had intened to Blog on this front in the morning.  I have posted it now because I must improve my sleep pattern.  This means staying in bed much later in the morning.  One thing I am going to do is keep my computer switched off from 8 pm at night until 10 am in the morning.  If I don’t get more sleep soon I will collapse.  This is just one of the measures I am going to take to try to improve my sleep pattern.

Dementia: Anosognosia and hiraeth

Anosognia and hiraeth  two extremely important words in any attempt to understand Maureen’s presentation.  They are recent acqusitions to my vocabulary, and would certainly warrant a challenge in any game of scrabble.

Anosognosia defines a reluctance to accept a medical diagnosis.

Hiraeth  explains ‘wanting to go home syndrome’.      

I see little point in encouraging Maureen to accept that she has dementia.  I can fully understand how she wants to go with: ‘I lost my memory once and it was frightening’.

Following our trip back to Nottingham, Maureen’s home town, one destination has been ruled out as a better place to live. It is possible that the same job will need to be done on Coventry.

What is going to happen next on our journey with dementia?  I have to confess I have no idea where we will be going.  It doesn’t worry me in the slightest when you have a Champions League Winner in your midst it doesn’t really matter.  All I need to concentrate on  to adulterate a Strictly Come Dancing  phrase is to: Keep Listening

Dementia: Champions League Winner!

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Maureen’s achievenment in making it to Nottingham, is equivalent to her beloved Reds winning the Champions League. What better way to celebrate her winning performance than a picture of her alongside a replica of the trophy taken during our visit to the City Ground yesterday . I had already awarded her a Platinum Medal for her performance in the early rounds of our trip south.  Now there is further adulation for her outstanding performance during our vist to the East Midlands.

Her achievement is remarkable when you consider she had so little preparation for the trip south.  Following stroke, eighteen months, ago she has not felt able to venture much further than Immingham, and that was for a visit to the Memory Clinic.  She has found travelling in the car very tiring; possibly on account of her 50% loss of peripheral vision.  Also her energy levels have fluctuated so much that on ‘duvet days’  she is hardly able to make it out of the bedroom.

Maureen opened the door to a trip to Nottingham by her comments on Wednesday morning.  She told me that she felt so much better that she wondered if she could go to see some members of her family in Nottingham.  I suggested that we could perhaps make it a day out or even an overnight stay.  Shortly after noon we were on our way.  The journey was far from straightforward, as I missed a turning and extended our journey time by half an hour.

As soon as we arrived at her brother’s I knew we were onto a winner.  When Barrie and Maureen get together their closeness is lovely to see.  I couldn’t recognise my wife from the tired, and listless woman, that often bases herself on the sofa.  In fact,I had to cajole her to go to bed well beyond our normal time for retiring.  The next day she was much the same enjoying visiting her old haunts.

I am not ‘spinning’ here to avoid the complications of the trip south.  On occasions it was painful to watch Maureen in new surroundings: she struggled all the time we were at her brother’s to find her way around his bungalow  What I am dwelling on is Maureen’s herculean effort to ‘hang on in there’ and make the best of our visit to Nottingham.  That is why she has her award: she deserves it.

When she phoned her brother to thank him for his hospitality, the emotion in her voice was palpable.  I suspect this is because she may have thought she would never see Notingham again.  It is possible that she may well prefer to stay local from now on.   As I have said before I do not consider my role is to encourage her out of her comfort zone.  She certainly doesn’t need to go chasing around the country to please others.   We are quite capable of  developing all the cognitive stimulation she needs here in Cuddly Cleethorpes.  To quote from the words of the Sky Blue Song: ‘while we sing together we will never lose’.  Did I ever mention my team is Coventry City ?  ‘Come on you Reds’; indeed!