All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

Dementia: Changing Into A Lower Gear

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Image result for Changing Into A Lower Gear for Dementia pictureDecided to post this at 3 am just to take a break from hostilities and recriminations with Mrs Dementia in full flow!

There is little doubt that I need to review my approach to supporting Maureen as her functional and cognitive capacity continues to decline.  To use a motoring analogy I need to change into a lower gear as the hills from dementia get steeper to climb. Relatives and friends also need to review their approach to supporting someone who is really struggling at this moment in time.

Maureen’s awareness of her condition has been heightened by conversations with her Care Coordinator on Monday.  Yesterday, she lamented that she was getting worse and seemed very downhearted. During the day she had moments of abject confusion: completely lost in her surroundings along with frequent time-travelling.  I didn’t help matters by encouraging a visit to a relative where the conversation flowed at a rate that was beyond her capacity to absorb.

Last night she was reluctant to go to bed and is talking incessantly into the early hours.  Maureen tells a sad tale of a life full of disappointment and lack of fulfillment.  I have recorded some of her rambling to share with professional staff.

It is fortunate that I have a scheduled meeting with my Admiral Nurse and the manager of the Home Treatment Team this morning.  We all clearly need to review our approach to supporting Maureen as dementia marches relentlessly on.

 

 

Vascular Dementia:’There’s No Tablet For It’

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Maureen’s first meeting with her Care Coordinator on Monday went well.  Our visitor played it carefully in the opening exchanges when she informed Maureen that ‘there was no tablet that could solve her memory problems’.  This was music to Maureen’s ears as she has a well-founded antipathy towards medication.

One of the interesting issues from the Care Coordinator’s visit is how much Maureen has retained of the lifestyle advice that she was given: the literature that she was left to peruse remains undisturbed on the coffee table  She made no mention of the discussions that took place until early this morning when she said ‘that woman is trying to turn me into a socialite’.  I hope I managed to turn her comment into something productive by suggesting we kept a daily record of our exploits so we could show others what we have been up to – she seems keen on this idea.Image result for bambi pictures

Maureen is a bit like Bambi this morning: ‘kinda wobbly’.  She was too frightened earlier on to go to the bathroom without assistance and she seems rather unsteady on her feet.  I hope that we are able to have what I often call an ‘easy day’; pottering around the house doing what any couple of our age might do when one of them feels out of sorts.

 

 

Dementia: Credit Where It’s Due

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Image result for Credit Where It's Due pictureOur social worker continues to provide sound support and guidance as this unforgiving journey continues.  I am pleased that Maureen recognises his contribution to our welfare as noted in Girl Friday’s log:

‘Maureen happy that the social worker came to see her.  She likes that he comes to check on her.’

I’m hoping that I have set the scene for a positive reaction to two new faces this week.  Maureen’s Care Coordinator will be making her initial visit this afternoon and I’m hoping that she gets off to a good start.  Her involvement could lead to all sorts of outcomes that could have a positive impact on our lives.

On Thursday the Manager of the Home Treatment Team will be here to assess how we are doing.  It is reassuring that she wants to see us when things are going relatively well, rather than responding to our call when we are in crisis.

We are very fortunate that professional staff in this area are person-centred and are prepared to adopt a progressive approach to supporting carers and their loved ones.  The usual story with vascular dementia is a discharge from the Memory Service unless you are on medication: Maureen declined the offer of antidepressants quite some time ago.  I remember vividly her response to this offer: ‘why do I need those things when you can help me’.  She had witnessed her husband escape from a lifetime on mirtazapine with the support of a therapist and knew of Irving Kirsch’s expose of the misinformation peddled by the drug companies.

One further example where credit is due: a new carer at the weekend immediately hit it off with Maureen.  To hear them preparing vegetables for the Sunday lunch to the Sound of Music yesterday would have made an excellent recording.  I know I’m biased but Maureen would give Julie Andrews a run for her money any day.  A little bird told me that my wife had a soft spot for Christopher Plummer earlier in her life: a sign of a misspent youth perhaps?

Dementia: ‘Nobody Loves Me’

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Shortly after Maureen woke up this morning she told me that she thought that no one loved her.  She went on to say that she needed so much help now that people were getting fed up with her.  I gave her a hug and told her how much I cared about her; along with reassurances that many others loved her.  Perhaps, I should have reminded her that I served her ‘breakfast’ in bed at 10 ‘o’ clock last night as she was reluctant to go to sleep on an empty stomach!

I have a cunning plan to address Maureen’s discomfort, that might just give her a modicum of reassurance when such negative feelings arise.  It is an opportune time to revisit our daily schedule to and consider the impact that might have on Maureen’s feelings about her self-worth.  This is where I need to concentrate my energies as reflecting on the unsupportive behaviour of others will achieve nothing.

Girl Friday is here shortly and I will chat over some ideas I have about how to help Maureen feel loved and valued.  She is also with us on Monday’s so a flexible weekly plan with a few targets beckons.

Things have taken a turn for the best here now as Maureen has asked me for a small photo to keep in her handbag, to remind her of what I look like.  I wonder who is going to remind her of the latest hiding place for her handbag?

The Dubliner’s, with Barney McKenna at his best, has to be today’s Good Music Page.

Update: added at 10 am as my thought for the day:

Dementia: The Missing Link

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Great news: a Care Coordinator for Maureen is only a phone call away.  This arrangement has resulted from a significant interdisciplinary team effort to address a missing link in the support available to Maureen.  Her diagnosis of vascular dementia led to a discharge from the Memory Service, as there is no medical treatment for the condition.

I am optimistic that a Care Coordinator may help Maureen to address her concerns that she has been left ‘up the creek without a paddle’.  She frequently says that she has been offered no treatment for her condition.  It remains to be seen whether she has the ability to retain, or the willingness to respond, to what might be placed on her table: time will tell.

I’m also hoping that the Care Coordinator will be someone who I can bounce ideas off.  As ‘the Manager of this Care Home’ (as Maureen often sees it) I would welcome the opportunity of chatting over my approach with someone who is on the case and is seeing what is going on here first-hand.

Maureen is still high from our trip to Nottingham on Saturday.  I have stuck a couple of photos on the doors of kitchen cupboard as a reminder of being with her sister.  Her brother phoned last night and hearing her recount her efforts to support her sister was heartening.  I have provisionally booked an overnight stay with her brother towards the end of the month to carry on the good work.

 

Dementia: Y S Phone Home!

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Image result for Please Phone Home PictureAs I I hadn’t E T at my disposal I rang  Maureen’s Youngest Son at 10 ‘o’ clock last night and it did the trick.  He phoned back and his mum gradually reduced her pleas to be taken home so she could look after her aged parents faded.  A short while later she dropped off to sleep on the sofa; exhausted from a hectic couple of hours.  I took to the spare bedroom and Maureen woke me to tell me how relieved she was that she had found me.

My earlier attempts to solve the ‘take me home’ crisis had fallen on stony ground.  A late night drive around Cleethorpes and Grimsby had not done the trick.  On our arrival back home Mrs Dementia was out in force with threats and accusations that I would be in real trouble once the authorities were aware of how I had kept her against her will in a strange house.

Maureen was very frightened that I had left her when I took a bathroom break early this morning.  I’m hoping that a pain relieving lozenge and a cool drink will sooth her sore mouth so she might get a little more rest. The chronic condition needs further diagnosis if we are ever going to find a solution.

Last night was a disappointing end to a positive weekend.  Maureen had been in great form on Saturday trying to help her sister who was in a sorry state.  It is possible that hearing her sister talk about her own memory problems and seeing her in such a pitiful state has shocked her – creating a focus on her own shortcomings.  Visiting her little sister in Nottingham was always a risk and may have been a bridge too far on this occasion.

Girl Monday will be her in a couple of hours and I will seek her counsel about recent events.  She is unique: she understands dementia and knows Maureen.  I also have the luxury of being able to chat things over with my Admiral Nurse and staff at the local Alzheimer’s Society if Maureen remains unsettled.

NB: From now on I’ll print of my posts and add them to the Girl’s (Carers) daily briefings.

Dementia: What Could You Fix?

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What could you fix?
News and Comment from Roy Lilley

 

Before Xmas I linked to this story about NHS car-parking charges.  Out of the blue I got an email and had a follow-up conversation with a charming lady.  Here’s the story.
‘No one will ever know how I felt that night… walking out of the ward… along the soulless corridors, across the concourse into the car park.  I found the parking ticket in the bottom of my bag.  It was creased up, I smoothed it against the face of the box and fed it into the slot…
Ninety eight pounds….
John had taken a long time to die…
‘Dementia.  He died just before his seventy seventh birthday.  Two days before Christmas.  I’d been with him for five days.
Watching, as every component that made him the dad, the husband, the runner, the graduate, the scientist, the inquisitor, the friend, the lover, the lifelong companion… closed down.
Inch by inch, sense by sense, slipped from his grasp.  He forgot how to speak, forgot how to eat, he forgot how to see, he forgot how to drink, he forgot how to live.  He forgot how it all worked and surrendered into the arms of Morpheus. 
‘I panicked.  Where would I find 98 pound coins?   I pressed the help button on the machine.  A recorded voice said; ‘Out of hours I should call…’ a mobile.  I had no way of remembering the number or writing it down.  My phone was out of battery…
What would John have done….
I walked around the dark, empty car park.  Tears running down my face.  I found the last remnants of a tissue in my pocket.  I didn’t think I could cry anymore.  
 
Neon lights flickering, pools of darkness.  Back on the ground floor I found a machine that took credit cards; drove home.  Parked on the drive. I sat for a while and eventually put the key in the door.  I was on my own now.  I burst into tears, again…
Holiday photographs, clothes, magazines, books.  A time capsule of a life together.
‘I had to go back to the hospital the next day.  The car park, again.  
I went to the ward.  The shifts had changed and they didn’t know who I was.  They sent me to an office.  It was just after one o’clock.  Lunchtime.  I had to wait for an hour until it opened.
They weren’t ready for me. There were phone calls, patronising looks and a woman who apologised for calling him James.  Apparently, I should have telephoned.’
This story gave me an intimate insight.  
However good the the care, whatever they did… if you think the NHS is all about doctors and nurses; it’s not.  Everyone plays a part.
Which bit of this could you fix?
How about that there is no treatment for vascular dementia and it is likely to be mistakenly looked at from a Mental Health perspective.  All I can ever do Roy is keep banging the drum based on our experiences on this unforgiving journey!

Dementia: ‘Please Cut Us Some Slack’

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The postponement of today’s Best Interest Meeting may well have been an inconvenience for some people but I want to argue that it is a positive development.  It is an opportunity to ‘cut us some slack’: to give us time to demonstrate that we are gradually finding a way of living beyond dementia (Swaffer).

My simple assertion, this morning,  is that it is in our Best Interest to give us a little more time to enjoy our lives together with minimal interference from others.  I’m very happy to have ‘behind the Chair discussions’ to agree how developments might be monitored.  Apologies for using a ‘trade union’ phrase for how I hope to progress matters but ex-shop stewards never die: they just go white on top.

My suggestion is to put the BIM on hold:  giving us three months to show our Spring Term Programme is working. Sorry again for resorting to old parlance but we worked together organising Adult Education Programmes for years.  Yesterday’s post indicated that music and foreign languages will feature this Term and there is more to come.  We have already piloted chauffeur driven away days and have been talking about short breaks together, rather than traditional approaches to respite.

Anyone who has seen or spoken to Maureen recently will have seen a positive change in her presentation.  I know that my wife can never return and Mrs Dementia is only ever around the corner.  However, the ‘student is learning’  and is beginning to grasp how to deal with the fact that there are now ‘three people in this marriage’. What a shame I have a lovely photograph of Maureen with Princess Diana’s ex-husband and that would have been a fitting way to end this post!

 

 

Dementia: Distraction and Redirection in Action

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I had to pull out all the stops yesterday to try to ‘settle’ Maureen, as they say.  She struggled in the morning when Girl Wednesday was here and I had to lock down for a while to keep her within the four walls of our home.  During the evening, her restlessness continued so I decided to try a little musical distraction and redirection, by attempting to play my ukelele.  Once again YouTube came to my rescue with an introductory lesson that included singing this song from Bob Marley:

We both love reggae; are fans of Bob Marley and were familiar with this song.  In many ways, it epitomized what had been happened earlier in the day with the cancellation of the Best Interest Meeting.   It would be wrong to share too much detail here but Maureen’s right to have an Independent Advocate is now being processed.  The suggestion that I might fulfill that role in addition to being her husband and Care Partner, smacks of overload.  However,  I’m optimistic that a pragmatic approach to discussing Maureen’s welfare might develop in the next few days that could result in the  BIM becoming redundant.

Returning to the theme of distraction and redirection, I pulled another rabbit out of the hat, last night, when Maureen was on a comfort break.   I found an Introductory French Lesson on YouTube and exchanged simple phrases on her return.  Maureen has always been a good linguist and her French is far better than mine but she was kind about any mispronunciation

Towards the end of the evening we moved onto Maureen’s favourite musical and sang this one, along with many others, together:

There’s only one way to describe how things are this morning: comme ci, comme ça as Maureen has woken a short while ago wanting her mum.  I have asked if she would like to go to Nottingham today, to see her family but she is ‘too tired to travel anywhere’ and has returned to sleeping on the sofa.

Dementia: It’s A Farce

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I have decided to follow my dear old dad’s advice to his children: ‘tell the truth and shame the Devil’.  In my opinion, the Best Interest Meeting scheduled for Friday, to discuss Maureen’s future care and accommodation, is waste of time and public money.

My experiences of a Best Interest Discussion have not filled me with confidence.  Apologies have been forthcoming but I’m far from inspired with the scuttling around that is going on as professional staff attempt to get their house in order for Friday’s meeting.    I hope that such busy people are not overlooking the simple fact that Maureen wants to stay at home and I’m happy to continue as her Care Partner.  

My suggestion is that any review of Maureen’s care takes place with those people who are directly involved in her wellbeing.  What is the point of discussing such matters with those who only have an occasional involvement, and a  passing interest, in her welfare?

To keep within the spirit of my dad’s advice I would respectfully suggest that the Best Interest Meeting is little more than a farce and a very expensive one to boot!