Category Archives: General

Dementia: A Caregivers’ Prayer

General

Today is the start of an important week in my role as Care Partner to Maureen.  On Saturday I aim to be on my way to see family.  I am hoping that arrangements are in hand for Maureen to be well cared for while I get to  see my folks, and have much needed break.

It has not been easy to secure respite in the past.  So I thought it a good time to reflect on the sentiments of  the Caregiver’s Prayer, that follows.  I just hope, and pray, that this time my plans are not frustrated by the inability of others to make the necessary arrangements.  I think that three weeks is a reasonable amount of notice, for our social worker, to arrange around the clock care for Maureen.

The following passages are reproduced from the Alz Live Newsletter.: 

‘There’s a neat little 12-step “prayer,” that is the Mother’s Little Helper of caregiving.

It pops up on websites and blogs; people pass it along to their friends who are looking after someone with dementia or Alzheimer’s.

Fridge-worthy? It might be. It was written by Carol J. Farran, DNSc, RN, and Eleanore Keane-Hagerty, MA, in 1989 and printed in The American Journal of Alzheimer”s Care and Related Disorders & Research’.

12 Steps for Caregivers

Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me and my relative. I need to:

  • Take care of myself so that I can continue doing the things that are most important.
  • Simplify my lifestyle so that my time and energy are available for things that are really important at this time.
  • Cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
  • Take one day at a time rather than worry about what may or may not happen in the future.
  • Structure my day, because a consistent schedule makes life easier for me and my relative.
  • Have a sense of humor, because laughter helps to put things in a more positive perspective.
  • Remember that my relative is not being “difficult” on purpose, rather that his/her behavior and emotions are distorted by the illness.
  • Focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
  • Increasingly depend upon other relationships for love and support.
  • Frequently remind myself that I am doing the best that I can at this very moment.
  • Draw upon the Higher Power, which I believe is available to me.’
Reprinted from The American Journal of Alzheimer”s Care and Related Disorders & Research, November/December, 1989, 4(6), 38-41.

Dementia: Care Partner@confused.com

General

If I wanted a new EMail address that reflected my mode, at this moment in time, it would be Care Partner@confused.com.  My reading of conventional wisdom leaves me uncertain on the way forward after our little break in Nottingham .  The physical consequence of our trip as far as Maureen is concerned is total exhaustion.  To put it in Maureen’s words: she has felt ‘wiped out’ since our return from her home town.

There are lots of catch phrases thrown around once a diagnosis of dementia has been made.  ‘Use it or lose’ it has parlance amongst the experts.  I am just wondering if we have overdone it?  Have we done too much in one go, and what are the long term consequences?

Maureen is an outdoor bird.  As soon as she is down in the morning windows, and doors, are opened.  If conditions are favourable she will be out in the garden ‘stretching her leg’.  She always recites Dr Stead’s mantra: ‘to keep walking’; to address the discomfort in her left leg.  Since our return from Nottingham she has been too tired to venture any further than the garden.  Her trips outside have been to; put washing on the line, and occasional inspection of the garden.  She is simply too tired to do much else.

I think it is obvious that the trip to Nottingham has taken a significant toll on Maureen’s physical and mental capacity. Three days on and some of the memories associated with the trip have faded.  She became very upset last night: thinking she had not seen her sister.  We spent a couple of hours in the company of Val.  Maureen even invited her ‘little sister’ up to Cleethorpes, as she thought  a  short break would help the loneliness of Val’s life in Nottingham.  She has plans to write to Val today, and apologise that we didn’t get over to see her.

The issue I need to resolve is if our little trip has been in Maureen’s long term interest.  Has the herculean effort on Maureen’s behalf supported recovery or has it increased the rate of  decline?  It is something I need to come to a conclusion on if our pursuits in the future are to have a postive impact on Maureen’s welfare.

Our journey a little further afield than Immingham has pleased several family members.  However, our agenda is not to keep others happy: it is to be clear about what is in Maureen’s long term interests.  How fortunate that Mel my new Admiral Nurse starts today.  I will also pop along to our local chemist and chat things over with Evonna.  I can also seek Tracey, our social worker’s opinion, as I am sure she will be in touch today to confirm arrangements for the weekend.

Many hands make light work!

Dementia: ‘Do You Remember?’

General,

There is a steep learning curve to be traversed once you become a Care Partner.  One of the key lessons t is never ask a question that is concerned with the memory of your loved one.  So phrases like : ‘do you remember?’ are a distinct no no.

Unfortunately during our little break in Nottingham the phrase ‘do you remember?’ often infected conversation .  That was inevitable with family members getting together to share their past.  On occasions, as we visited old haunts, her brother frequently posed the question.   I decided not to intervene as I heard Maureen convince herself that things had changed, and that is why she couldn’t remember.

You can be sure I will never play Do You Remember by the Scaffold even if it was amongst our vinyl!

Dementia: A Rude Awakening

General, ,

It’s 5 am in the morning and I have been awake for an hour.  The events of the last hour have set my mind racing, and sleep is impossible.  Perhaps this ‘rude awkening’ was meant to be: it has clarified my thinking over next weekend.

Maureen returned from a bathroom break feeling cold.  She put the light on to recover a blanket that had slipped off the bed.  Then she left the bedroom, and everything went quiet until I heard her call my name. I found her downstairs, in the dark, saying that she was: ‘lost and couldn’t find her way back to bed’.  As often happens she is now fast asleep, and I am left awake with my thoughts.

This morning is a stark reminder of her presentation.  One constant is the unpredictable nature of her mixed dementia. On occasions  Maureen can present being in complete control of her faculties.  At other times she is overtaken with abject confusion, and ensuing distress.  It is therefore not safe to leave her to her own devices for anything other than very short periods of time.

My rude awkening confirms what is needed for next weekend, when I will be visting relatives: round the clock care in our home.  Anything else would be nothing short of a negligent approach to her welfare.

Dementia: Anosognosia and hiraeth

General,

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!

General,

Featured image

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!

Dementia: Stop Talking: Start Listening

General

It is time for us all to change the way we interact with Maureen. We need to become listeners, rather than talkers, so the we can begin to understand her reality, and provide appropriate responses to her needs. This is going to present a significant challenge to yours truly.   Having found a listener I now need to  become one myself: no simple task for someone who is often seeking an audience for his take on life.

Maureen has been in bed for over 12 hours now: totally wiped out by the last couple of days.  I would anitcipate she is likely to be asleep for a while longer yet.  I am hoping that we will be able to limp back to Cleethorpes this afternoon. The trip to Nottingham has been a revelation. It has helped me to increase my understanding of Maureen’s reality and capacity.  I could write volumes on what I have heard, and seen, but I am opting to summarise with bullet points:

  • Maureen has struggled to find her way around a small bungalow.

  • She is anxious about saying or doing the wrong thing.

  • Nottingham brings back many painful memories.

  • Her nurturing nature remains intact: she would like to help her sister.

  • She prefers Cleethorpes to Nottingham.

  • It would be unkind, and unfair, to try to travel further south.

  • Maureen’s confusion about: time, person and place is becoming greater.

  • Staying in other people’s homes is no longer a sensible option: it is too disruptive on their routines.

Several people have helped to cajole Maureen to venture beyond Cleethorpes. I am unclear in whose interest our efforts have really been. It is no longer my opinion that encouraging Maureen outside her comfort zone is the way forward. I have no idea what it is like to have dementia or live with dementia. My perspective is only gained from living with someone who has dementia.

I am absolutely certain that the most appropriate response to Maureen’s presentation, at this moment in time, is to continue to seek to minimise distress. This will not be a simple task; as it has to involve attempting to inform others of what might be needed at any moment in time. Such efforts may not increase my standing in the popularity stakes.  I hope others will accept that being with Maureen 24/7 and listening to her, as dementia marches relentlessly on, gives me a perspective that is worth considering.

Dementia: A Refreshing Approach To Respite

General

Any perusal of the literature about dementia would identify the need for Care Partners’ to secure arrangements for adequate respite.  The general view is that time off from being on call 24/7 is vital to avoid care burn out.  I want to argue that such an approach to respite is indicative of something Kate Swaffer calls Prescribed Disengagement.  It is also an approach that does not sit easily within our attempt to revert to our normal life following Maureen’s stroke.

A few weeks after Maureen came out of hospital I went on holiday with two of my daughters.  Because of proximity to stroke Maureen could not have taken up her place on the trip. Maureen’s family came to the rescue and stayed with her, while the three of us enjoyed a week on the Algarve.

I made a tactical error a couple of months ago and Maureen got the message that she had tired me out.  I lost the plot completely and said : ‘I needed to get away because I was tired’.  When I look back I don’t know what I was thinking of to convey such a message to someone with dementia.  What better than to convey to your wife that she had become such a heavy burden that you needed a break before you could resume your caring role.  In my defence I would want to argue that tiredness interferes with pragmatic thinking!  A morse constructive line might have been: ‘we could both do with a holiday’.

We are still in Nottingham staying with family.  What better place to take respite than Maureen’s birth place.  Who better to stay with than her brother and his wife.  So we lodge in a familiar place where Maureen knows she is loved and understood.  That understanding comes from Dianne and Barrie experiencing dementia within their own family.  They regaled us with stories of Dianne’s mums presentation for years.

I am not arguing that married couples should behave like siameses twins: joined at the hip until they are separated by the Grim Reaper.  Having separate interest is the glue that supports many a married couple.  What I am asserting is that the general approach to respite is counterproductive in our case at this point in time: we need to foster opportunities like this one for us both to find opportunities for respite breaks.  Now I face a dilemma on this front in ten days time.

I need to visit Coventry and London very shortly.  It would not be sensible for Maureen to accompany me on the whole tour.  What I need to attempt is a set of words that does not portray the need to escape from carer burnout but some time out to see my own family.  The real sticking point will be dementia can lead to all sorts of complications in thinking and I need to be very skillful in my presentation of my trip.  If my time out is seen as desertion or elevating the status of my own family then I am in for a rough ride.  Such discussion are made problematic when rational thought and logic are dominant when dementia takes hold.  Wish me luck with the discussions that are essential in the next few days.

Dementia: Unearthing Another Little Gem

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Exceptional news to report: after 18 months we have ventured outside Lincolnshire.  We have made it to Nottingham, to visit Maureen’s brother and his wife.  Maureen is over the moon that she has at last travelled any distance after such a long time.  This is a significant achievement – team work has paid off at long last.

Tracey, our social worker, helped to pave the way on Tuesday. As Batman she helped,alongside Robin, set the wheels in motion.  Gale then followed up by playing a blinder; to almost push Maureen into our car shortly after noon yesterday.  Her contributions was immense, as she helped me to nurse Maureen along yesterday morning.

Gale has been along to our house on a couple of occasions. Her performance yesterday was outstanding.  As soon as she arrived she warmed to the theme of cajoling Maureen to go on a day trip to Nottingham.  She played her part exactly to the script: listening to Maureen’s tales of all sorts of things; whilst gently nudging her to make the journey south.

Gale’s compassion, understanding of dementia and ability to make appropriate interventions helped me to see we had another gem on our hands.  I took immediate action and contacted the Agency to request that Gale becomes our ‘Girl Wednesday’.  I left Michelle.at the Agency, in no doubt that this was far more than a request, when she replied that she would ‘do her best’ to accommodate my ‘demands’.

I have no idea how today will go.  It is possible that Maureen will need to ‘Sleep for England’ for a couple of days.  On the other hand we might be able to continue our travels a little further South.  It’s all a question of taking a ‘rain check’ with the umbrella of common sense in hand,  Whatever happens: Gold Medals are awarded to Tracey and Gale.  Platinum of course for Maureen.

Dementia: ‘Help: I Need My Admiral Nurse’

General

It’s 4.30 in the morning and I would defy anyone to sleep after the conversation I have just had with my wife. Wait a minute I need to correct that to: after listening to Maureen for the last half an hour or so. To put things into context we are in Nottingham staying with her brother and his wife. It is one of those occasions when as soon athe clock struck nine I would be ringing Heather my Admiral Nurse to get her take on things. Unfortunately,Heather has left, and Mel her replacement doesn’t start until Monday. So my contingency plan is to talk to Evonna as soon as we are back on home turf. If it’s her day off from pharmacy duties at Lloyds, then I will just have to ruminate on matters a while longer.

I will deal with how we made it to Nottingham later in the day, after spilling out the detail of Maureen’s reality. After lying in bed listening I now have a grasp of Maureen’s world: a fascinating insight into her thoughts. It goes something like this:

Maureen lives in a Care Home in Cleethorpes. She suspects they will keep her there until the money runs out. There is this carer called Paul who is really helpful to her. It was embarrassing at first as he sorted out her washing, and solved the shortage of underwear. She thinks he may be gay but he is very helpful.

Some lady carers come in to look after her. They are very kind, and sometimes give her a shower. She isn’t really keen on this type of personal care but she is getting used to it. She feels sorry for them as some of their male clients are cheeky. Some of them follow in their mum’s footsteps to go into caring work.

She feels she can now look after herself. As she has been discharged from hospital she hopes to be able to go home soon. She is often really fed up and has little in common with the rest of the residents in the Care Home. She often stays in bed as there is no-one she wants to talk to and has nothing to do most of the time.

I am sure I have missed out bits of Maureen’s monologue. This is a very different presentation from the listener that Maureen is. It is a fascinating insight into Maureen’s reality. It has reassured me that she feels I (Paul) am doing my best to look after her.

How selfish of Heather to be on the point of emigrating.  Hey girl if you are reading this; one final musical number for you, Dolly of course: Just When I Needed You Most .

Evonna I hope you are there on Friday when we return to the ‘Care Home’. If not I know that Mel will be itching to ‘get out the blocks’ on Monday; so may as well help her to get into the old routine.

How lucky I am to have mentors so readily available. Some people laughed when we said we were moving to Cleethorpes!