Category Archives: General

Dementia: ‘A Sprinkle of Gratitude’

General

I have decided to use the title of a blog I follow as a way of saying something about my trip to Coventry yesterday.  Jennifer often begins her posts with: ‘I’m very grateful for…’  This brief post will take on a similar format:

I am very grateful that we now have a social worker who has made it possible for me to have away days to visit family.

I am very gratfeul that our Care Agency sends supportive carers to sit with Maureen.

I am very grateful that Maureen allows carers to sit with her for 14 hours.

I am very grateful that National Express provide reliable transport for my journey.

I am very grateful that my daughter Lisa transported me around Coventry.

I am very grateful that my sisters make sure my mum is well cared for.

I am very grateful that my mum’s carers look after her welfare.

I am very grateful that my brother’s carers look after his welfare.

I am very grateful that Maureen and I have decided that we will seek to avoid Residential Care for as long as we are able.

Finally, I am grateful that our social worker will be ringing me back after noon to arrange some additional carer sits over the next few days to help me cope with Maureen’s challenging presentation.

I’m very tired after a long day yesterday, and will write a reflective piece on my visit to Coventry tomorrow.

Dementia: ‘A Stitch In Time’

General

I’m posting earlier today as I have a coach to catch at 7am.

I became rather concerned on Monday when I heard that there would be some new faces looking after Maureen today.  At first I wondered about the wisdom of leaving her for 14 hours ,mostly with people she has never met before, while I visit family in Coventry .  Then I remembered the work that we had done to provide some ‘Handy Hints’ for carers.  Any newcomers will now have the benefit of some basic guidelines on how the ‘old hands’ care for Maureen.  The guidelines are  predominantly about preserving independence, and dignity.

The other thing that is reassuring is the quality of the support team I now have available to me.  Within the last few days I have received good support from a:  neighbour, Social Worker, Admiral Nurse,  Chemist in addition to carers. They have all played a significant part in helping me to cope with Maureen’s changing presentation.  It’s so good to know that I only have to:  call next door, walk around the corner, switch on my computer, or chat with our carers and informed support is available.

There are three of pieces of advice that are particularly pertinent from the last week.  Firstly, I need to take time-out to see my own family.  Secondly, not to absorb what Maureen is going through: otherwise it will overwhelm me, and disable my effectiveness as a Care Partner.  Finally, Maureen still has some capacity but that doesn’t mean that she is necessarily capable of making rational decisions about her own welfare.  The advice from Yvonna our chemist about not absorbing Maureen’s presentation, was particularly poignant yesterday afternoon.

When I reminded Maureen of my plans to visit Coventry today it caused quite a reaction. Maureen began her normal routine of coming with me in: the car, coach or train.  She even suggested that she could  be dropped off at her sister’s in Nottingham, and I could make the onward journey alone.  When I outlined the impractical nature of her suggestions she became very hostile.  Following a sleep on the sofa she said she was surprised I had already got back from Coventry. I chose not to contradict her confusion, and fabricated answers to her questions about how mum and my brother were.  An hour or so later as she was preparing for bed she said she was surprised I was here, as she thought I was staying overnight in Coventry.

Unfortunately, all is not well in my birthplace: Mum has a heavy cold, and my brother has recently had a couple of falls in his Nursing Home.  His wife Jean has flu and hasn’t been able to visit for a few days.  I am hoping that my lunch buddies:  daughter Lisa and sister Jill, are well enough to make our date at the Red Lion.

 It will be good to be back in Sky Blue Land and I hope that my presence helps ‘The City’ to get back to winning ways on Saturday.  I couldn’t close this post without a tribute to J H: the man gave so many of us such pleasure when he transformed our Club.  Rest in peace Jimmy after your brave battle with Alzheimer’s.  I hope that my beloved Sky Blues mark your passing with promotion this year.  Let’s all sing together: play up Sky Blues.

 

Dementia: ‘Thank You Good Samaritans’

General,

I am really grateful to several good Samaritans who came to my aid yesterday, in my hour of need.  As I made my way back to my car inGrimsby I began to feel as and stood restingat the side of the road.  A gentleman who was passing by enquired if I was alright escorted me back to a safe haven.  The girls in reception of my solicitors took care of me until I felt well enough to drive to my doctors for assessment.

Nina a Practice Nurse delayed her lunch, to discover that low blood pressure was causing my discomfort.  Chloe Maureen’s carer contacted Michelle at the Care Agency to arrange emergency cover to step in as my return home was going to be delayed.  Apart from my mobile phone creating problems everything else worked like clockwork.

All of the people involved rescuing me in my hour of need stepped up to the plate without hesitation, as did other cogs in the wheel that I have not mentioned.  The gentleman who stopped in the street just happened to mention that his wife had lung cancer, and was on palliative care.  The women in the solicitors were all working away like beavers.  My friends at Clee Medical Centre were all busy trying to deal with the pressures within the NHS.  Chloe needed to get to her next call, and I’m sure Michelle at Hica was in the middle of her daily juggling act: matching need with scarce resources.

There is only one word I would want to say to you all: ‘THANKYOU’, for keeping Maureen safe, and reassuring me that my ticker wasn’t about to give out on me just weeks before I have had my three score years and ten!

I also need to apologise for the extra work I caused so many people yesterday: I needn’t have been rushing around in Grimsby.  My apology is based on failing to understand dementia.  My missions to try to find Maureen suitable clothing are pointless.  The hours I spend trawling clothes outlets are a complete waste of time.  The problems are not clothes: the problem is Maureen has dementia.  That means that only certain clothes will ever be suitable for her.  They may look worn or ill-fitting but if she is happy in them that is all that matters.  The days of Maureen looking like a well-dressed woman have gone: she has dementia! 

On the underwear front, again I am wasting my time.  There will be days when nothing is comfortable: everything will irritate her in one way or another.  Things that she has worn for days will be too tight, and scratch her tender skin.  On those days I need to provide TLC and not go on shopping expeditions for suitable attire: Maureen has dementia!

 

When I returned home shortly before 2pm Maureen was still in bed.  She had refused to eat or get out of bed for Chloe.  Apparently on occasions, she used some unpleasant language to express concern that I had ‘gone out to enjoy myself yet again’.  She showed some concern about my dizzy spell in town, and carried on as normal for the rest of the day.

Early evening I left her to tidy up the kitchen; complaining about a shortage of staff in this Care Home.   I realised l my mistake later when I saw the state of the kitchen. When I went into the utility room I saw what else had been keeping her busy: ‘packing to go home’, as you will see from the photo opposite.

There is a clear lesson from today:  Maureen has dementia – forget that for one moment and I’m in trouble!

 

 

 

 

Dementia: Looking Back (Week 2)

General,

This week has been very challenging, and I am going to resist writing volumes summarising what has happened.  Instead I want to focus on an incident yesterday afternoon to highlight something of the current state of affairs.

All Maureen seemed to want to do yesterday was sleep.  I couldn’t prise he out of bed until after noon, and she ‘rested her eyes’ on the sofa several times during the day.  Towards the end of the afternoon I was tidying up in the kitchen whistling: ‘You Are My Sunshine’.  Suddenly Maureen rushed into the kitchen looking all flustered and said excitedly: ‘Is My Dad Here?’  Jack, Maureen’s father, has been dead for over 30 years.  The Good Music page explains the significance of this song. Whenever Maureen wakes up from resting her eyes; confusion abounds at one level or another. This time she quickly realised that her hopes could not be fulfilled.   

During the last week Maureen has often  been confused about time, place, and person.  This is nothing new but these periods are more frequent, and enduring.  It has often been difficult to persuade her to go to bed at night, as she wants to stay on the sofa.  She is frightened to go to bed by herself but anxious if I accompany her, when she is uncertain who I am. 

The ‘having no suitable clothes syndrome’ has once again reared its head with a vengeance.  Clothes are either missing, too tight or irritate.  This means that Maureen often returns to bed upset, and worn out, after a fruitless search for comfortable gear.  She feels that relatives who have long passed or those who have given up on helping her on this front, may resolve things: my efforts in the past week have been fruitless.   The amount of times I have trailed around the undies in Marks and Spencer have led to me being on first name terms with some of the assistants.

Another issue that keeps surfacing is Maureen thinking there are other people in the house.  For some time she has been enquiring about her Aunty Clarice and Uncle Dennis: now she often has concerns about children.  The other morning she wanted to know if they had already gone to school.  Then out of the blue one day she asked me where my son, Steven, had gone: we haven’t seen him for about three of years.  So a valid question indeed!

Maureen has been reluctant to venture outside in this cold snap, and her exercise in the last week has been restricted to the garden.  This means we have avoided the stress caused  by visiting supermarkets or relatives.  Maureen remains reluctant to make or receive telephone calls.  The only call she has taken this week resulted from a ‘cunning plan’ between myself, and her youngest son.  She has often talked of sending post cards to her grandchildren but these plans never come to fruition.

I have  had a couple of chats with Chloe and Gail this week about Maureen’s presentation. These are generally snatched conversations while Maureen is out of earshot.  The time has arrived when the three of us need to sit down to review how things are going, along with professional staff.  Things are changing rapidly and we need to discuss the most appropriate way forward.

On a personal note the rotator cuff in my left shoulder is not getting any better, despite further acupuncture,. My legs continue to give me grief.  One session at the Leisure Centre last week needs to be improved upon.  I have managed to slip in a few meditation sessions to good effect.  I have also spent the odd half  hour preparing my vegetable plot, and sorting out my seed trays

I’m really looking forward to Wednesday when I will be day tripping to Coventry to see my own family.  It’s good to have time relaxing on the coach, and ruminating on improvements that might be made at the home ranch.

 

Dementia: ‘From The Inside’

General

On most days I could fill pages on my Blog, as there is always so much happening here. Today’s post is necessarily brief: perhaps quality, rather than quantity.  This is because I want to spend time away from the keyboard, and stay close to Maureen.  I am trying to grasp her reality, and the short piece that follows will hopefully set me on this path:

I have stopped using the Alzheimer’s Site Talking Point for the time being, as I wanted to concentrate on my Blog.  In the last two days I have received private messages from two, of the many, people who gave me support as I searched for a way forward as a Care Partner. One of them, Nitram, forwarded an excellent clip from YouTube that I had never seen before called: Dementia From The Inside.  It is a very moving piece that gives an insight into what it’s like to have dementia.

I also think  ‘I’m Not Gonna Miss You’ from Glen Campbell,  is a very pertinent song for me to focus on today: he has Alzheimer’s.

I hope you enjoy watching these very moving clips from YouTube

 

Dementia: Remember Me (An Anthem For Alzheimer’s Disease)

General

I have just come across this song by  Chris Mann and simply had to share it with you. It is such a moving plea from someone who has dementai that it deserves wide circulation.  I have posted it here as I have a different song with the same title on my Good Music page.

Dementia:The Importance Of Teamwork

General,

One of the things I am keen to develop is a team approach to Maureen’s care.  I’m trying to work very closely with Chloe, and Gail, our regular carers.  In the last week we have drafted some guidelines for occasions when one of their colleagues have to step in. New faces at our door need some ‘handy-hints’ if their sits are to be effective: scanning a Support Plan as soon as they enter the house is not the best introduction to Maureen.

Myself, Chloe, and Gail, are the only people who see Maureen in action: we see beyond the confabulations that others receive.  We see Maureen’s increased level of confusion: making a cup of tea, and then forgetting it is brewing, so making another.  We experience the difficulty in getting her to shower or take  exercise.

I managed to chat to Chloe yesterday about Maureen’s reluctance to go to bed, and wanting to get up very early in the morning.  Both of us are familiar with Maureen lacking any concept of time: when it is dark she no longer has any idea if it is early morning or evening.  Whenever she wakes up from ‘resting her eyes’ she thinks it’s morning, and is expecting breakfast.  Chloe is aware of the shortcomings of a sleep deprived Care Partner.  I am concerned that carer burn-out will lead to an inability to look after Maureen.  We both agreed that something needed to be done to try to regulate Maureen’s sleep pattern so I can get more rest.

Following my discussions with Chloe I made a few changes in yesterday’s routine.  Firstly, I went out for a couple of hours in the morning.  I made the Leisure Centre for an hour, and had a relaxing time in the Spa, and Sauna.  This gave me some time to think on how to change one or two things at home.  On my return I noticed that Chloe had managed a ‘Pamper Day’ and Maureen looked spick and span.  She told me later that she had told ‘love lies’ about not being here next week, to get Maureen into the shower.  After Chloe had gone I set about changing our routines.

I deliberately served meals later, and encouraged ‘eye resting’ at different times.  The evening meal was served later; ensuring that Maureen was awake beyond 8 pm.  I parked myself beside Maureen on the sofa to prevent her from lying down. None of this went down well and my disgruntled wife picked at her food pouring scorn on the efforts of the chef: lots of it remained on her plate.  As always it was a battle to persuade her that she needed to take her blood thinner but I persevered.  Around 9.30 Maureen took herself to bed declaring she wanted to sleep alone.  I gave her ten minutes and joined her upstairs to support her bedtime rituals.

At almost 11pm I slipped into bed beside her, and wished her goodnight.  We slept relatively soundly together, and I got up 7 hours later to make early morning tea.  As I post this blog Maureen is still in the land of nod.  Her tea has gone cold: I will drink it later or use it as plant food.

More of the same today me thinks.  The one adage in being a Care Partner that always holds: if something doesn’t work try something else.  When I think of it that comes from Eric Berne’s ideas on transaction analysis’.

Dementia: ‘For Goodness Sake Come To Bed!’

General

Unfortunately, reading the writing of those diagnosed with dementia doesn’t help me with a particular aspect of Maureen’s presentation at the moment.  Whenever she wakes up from a period of rest, confusion abounds and she thinks it’s morning.  Yesterday she was also worried about where the children had gone.  She wanted reassurance that they were at school: most of their children have now left university!

My attempts to persuade her that it was time to go to bed at 11pm failed, and she insisted that she always slept on the sofa.  Eventually, at 1am I managed to cajole her to climb the ‘wooden hill’, and fall into bed.  These patterns of behaviour are becoming more prevalent and I need to think of a way of breaking this cycle.

This morning I am hoping that Chloe will be able to persuade Maureen to have a ‘Pamper Day’.  Chloe can assume the mantel of beautician, and encourage Maureen to wash and style her hair.  If the going is good Chloe might even persuade her that it’s preferable to wash her hair and shower at the same time.  It has been a couple of weeks since Chloe has been successful on that front.  To make things easier I will go out in case Maureen sees me as a ‘strange man’ in the house: that might just ease things along.

We all do our best to help Maureen to enjoy her days, and it sometimes difficult to know what to do for the best.  She can remember how to carry out household tasks but seems to have forgotten how else to fill her time.  Trying to keep her occupied all the time is exhausting but left to her own devices she often chooses to ‘rest her eyes’.  How on earth I am going to break this cycle, and wrest her from the sofa when it is time to go to bed I am yet to discover.  Leaving her alone late at night downstairs while I’m in bed risks her waking and feeling she has been deserted.   Then she may become extremely distressed, and anything could happen..

 

Dementia:Putting On A Brave Face

General

As I struggle to work out the best way to be a Care Partner for Maureen I have no idea what it’s like to live with dementia.

 When she was in hospital following stroke the Occupational Therapist gave me some special glasses to wear to give me an idea of what it was like to only have 50% peripheral vision.  However, I am well aware that dementia brings a little more than visual problems for those with the diagnosis.

My new Dementia Defined page uses blogs from people who have condition.  It is an opportunity to hear from the ‘horses-mouth’ what it is like to have dementia. That page also refers to an opportunity to experience some of the symptoms of dementia.  I’m not sure I would go in for that: having the glasses on to restrict my vision was bad enough. Having the whole experience is something I don’t fancy at all, and how Maureen is able to put on such a brave face whilst dealing with such adversity I’ll never know!

I  read the latest blog from, my dear cyber friend, Kate Swaffer  just before I returned to editing this post.  Her moving poem is a fitting way to close this piece:

 

I sat and cried for a while…

Screen Shot 2016-01-14 at 10.51.03 am

I sat and cried for a while…

I cried for those people who I miss and still love who have left this world

I cried for the babies I lost in utero

I cried for my friends who have lost people they loved

I cried for having dementia

I cried for all the other people with dementia

I cried it is getting harder to function

I cried it is getting harder to paddle like that swan

I cried that doing the right thing or what is necessary sometimes unintentionally hurts others

I cried that almost always people takes things personally

I cried because this also hurts me

I cried that many people with dementia do not see value in a unified voice

I cried because without a strong global voice change will be too slow

I cried for those friends and family who no longer speak to me

I cried for a mother and father to talk to me before they or I die

I cried for the lost relationships with some nieces, nephews and godchildren

I cried for those who make a stand for better care, and get abused for it

I cried because my having dementia affects my husband and kids

I cried… and I cried… and I cried… and I cried

And then I got back up and made a plan to keep going

…

I stopped crying

Authors note: thanks to everyone for your messages of support; no words to tell you how much they helped, and sorry I did not respond to each one of them. Today, is, thankfully, MUCH better, and I guess the saying about a good cry making you feel better is true! I wrote this poem yesterday, in the depths of my sorrow and anguish, and initially was not going to post it here, but in fairness to the reality of living with a dementia, which is that you cannot possibly live well with it all the time, it seemed unreasonable not to publish it here.

Postscript:  There will be a second post around 10am this morning about the problems of getting Maureen to bed at night.

 

 

 

 

 

 

Dementia: Dealing With The Hangover

General

We were both  hung over yeaterday after partying early into the morning .  Maureen was able to sleep it off by going back to bed at 7.30 am but I had a morning acupuncture appointment so I couldn’t join her.

Alison was sticking needles into me just before 9 am, for some real complimentary therapy. As she sorted out where to place the needles we continued our conversation of the previous week about dementia.

As a complimentary therapist Alison always steers the conversation in a personal direction, as she treats the whole person.  She knew that her question about how are you doing would lead to me talking about my role as a Care Partner.  As her dad had recently been diagnosed with dementia, we had a two-way conversation rather than me receiving counselling.

When I returned home Maureen was still sleeping off her hangover.  That gave me an opportunity to chat with Gail when she arrived for the carer sit.   We sat and had toast and tea together for a while. I gave Gail a catch up on how things had been in the last week.  I also showed her Chloe her colleague’s notes on how she cares for Maureen.  Gail added a further couple of sentences to Chloe’s work, so we now have guidelines for new faces when our regulars are not available.

The dedication of Chloe and Gail never ceases to impress me.  They treat Maureen  as a relative that they are very fond of indeed.  I couldn’t fault their approach to supporting us both: they are incredible.  As we can go weeks without a knock at the door, with a friendly face wanting to come in, they are so important to our lives.  Hence I have back-tracked over our discussions with our social worker last week, and want to continue with the current arrangements of carer sits for nine hours a week.

We both dozed at several periods in the day, to try to catch up with our sleep deficit form ‘partying’ the night before.  Maureen ‘packed for home’ on a couple of occasions.  The holiday was over from her point of view: ‘it’s time to go home, next time we’ll stay in a hotel’  She said this as I dragged her way from the kitchen sink exhausted from her efforts.  Her assertion was quite understandable: she often came to Cleethorpes on holiday after her parents moved back to Nottingham.

One final point from yesterday we sang a lot during the day to some of our favourites. We also developed a new game singing silly songs as you will see on my Good Music page.  Maureen has really taken to singing and often mentions how good it is for us to launch into song.  She is singing ‘Remember Me’ now: I will be always eternally grateful to Tom Schuller, and Kate Swaffer, for pointing me in the direction of the work of Oliver Sacks!