All posts by It's My Time Now

Unknown's avatar

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: Another Great Carer On Board

General

Image result for A great Carer PictureGirl every other Saturday is here again for her second visit.  She is another excellent addition to our team of carers.  I was so pleased when she knocked at the door as I am in considerable pain today in my shoulders, legs, and back.  Such an arthritic attack happens occasionally and needs careful management to send it on its way as soon as possible.

Maureen seems a little worried that her fun-loving husband is a rather subdued today. Initially, she thought it was something she had done to upset me.  Therefore,  I need to do my best to be upbeat and hope that dietary changes along with paracetamol will soon put a smile back on my face.

Our Care Agencies have been really supportive this week ensuring continuity even when they are stretched to fill all their calls.  We really appreciate them going the extra mile to ease our path on this unforgiving journey.

Dementia: Compassion and Fear

Uncategorized,

On Wednesday I received the sad news that a neighbour had passed away.  I delayed telling Maureen the news until the next day, as I feared it would cause a certain amount of distress.  Once again I was wrong as Maureen remembered with fondness an elderly lady across the road who had scolded her for being out by herself.  She still tells the story of an 86 year old woman with dementia, running down the road to bring her back home to me.  Later in the day, she showed great compassion to the grandson of the deceased when I invited him to our house to share our sadness over his loss.

Image result for Compassion and Fear Picture

During the afternoon Maureen was again in a compassionate mode as she tried to console me over the pain I was experiencing in my legs.  Once I shared the news that a medical opinion was needed, to seek advice over my restricted movement in both legs, her concern was palpable.  Unfortunately, she got the wrong end of the stick and it took me a while to understand how her compassion turned to fear.  It was only when she shared that perhaps she would need someone to come and stay with her that I grasped the significance of her concern.

I think Maureen believed that a stay in hospital would follow my visit to seek physiotherapy treatment this morning.  She shared that she had mistakenly been thinking that her deceased daughter would come up and stay with her in my absence.  Her thoughts are quite understandable as I will be returning to the hospital where I had both hips replaced.

Maureen is in a state of panic this morning with the prospect of my early morning visit to the hospital looming.  Her initial concerns have been about us being on time.  Now she is worried that she doesn’t know what to wear; alongside a thought: ‘if she doesn’t know how to dress they won’t let her go home’.  It’s clearly one of those occasions when I should have said nothing and gone for my hospital appointment alone!

I realise that most of the time I’m guessing how Maureen might be seeing things.  I must confess I have no idea why a publication that the Care Coordinator left for her consideration was first placed behind the sofa and then wrapped in a fleece.  My guess is because it was from the Alzheimer’s Society but I will never know.  What I do know is that Maureen is still a compassionate woman who is often frightened by her reality and attempting to minimise her distress remains my priority: not causing it – as I have clearly done at the moment!

 

Dementia: Positive Changes

General

I have made some significant changes in my approach to being Maureen’s Care Partner:

  • I’m no longer going to make my escape as soon as carers arrive on our doorstep.  Our ‘Girls’ as Maureen calls them need to be seen as part of the family.
  • I have reduced the time I spend on Social. Media significantly
  • I  have used YouTube for early morning meditation:
  • I have returned to in-house Tai Chi using this routine:
  • I am using the local Branch of the Alzheimer’s Society for support.
  • Girl Wednesday Night has now been recruited into our extended family.

It is crucial to keep my role under review as we continue on this challenging journey.

Who’s afraid of Virginia Woolf? Or Dorothy for that matter

Uncategorized

This post by George Rook cannot wait until tomorrow: who are the experts is so pertinent to our journey!

georgerook51's avatargeorge rook

VReflections on patient-NHS partnership working

img_1932

I’ve been to a workshop today to talk about revolutionising (or do I mean achieving?) real patient-staff partnership working in the NHS. Oh it was so refreshing and energising to be in a room full of people who get it, and who work hard to do it.

I like this name – partnership. In fact let’s go a step further…equal partnership.

For who is the expert? The patient/carer or the doctor, nurse, manager, director?

Who knows most? Who has the right skills? Who has the loved experience? Who has felt what illness feels like?

Well of course no one is an expert and everyone is an expert.

And who has the power in these relationships?

And who wants to retain the power in these relationships?

Several people today talked about reminding themselves when they walk into a meeting with a doctor that it should be…

View original post 364 more words

Dementia: ‘It Is Worth It!’

General, ,

Maureen was complaining this morning that ‘leaded windows make this place seem like a prison’.  When I suggested that we could change them she said ‘it was not worth it’.  Her comment led me to think what is worth trying to change on this hazardous journey?  Many argue that dementia is a progressive condition and decline is inevitable: others see that as a negative approach which Kate Swaffer has termed Prescribed Disengagement.

Anyone who follows this blog will know where my money is and will have read my feelings about Prescribed Disengagement.  Perhaps there is little point in having clear glass in our windows but it is worth trying to move some things forward:

  • I realise that ‘wanting to go home’ is likely to feature in Maureen’s dialogue day after day so I’m going to give this approach a go for a while:
  • After 25 years together I’m trying to learn more about Maureen’s extended family – her mum was one of ten.  The search is on for photographs of Maureen’s relations and hearing her talk about her family is fascinating.
  • Today’s planned expedition to Nottingham has been postponed and our chauffeur has been stood down.  Maureen is far too confused to take her away from the home base at the moment.
  • I hope to make Wednesday night a fixed feast for an overnight sit as soon as professional staff and the relevant Care Agency are open for business this morning.
  • I need to seek medical advice over tightness in my shoulders and legs with a return to Tai Chi imminent.
  • To have a chat with Girl Monday this morning about how Maureen has been over the weekend and adjust our approach accordingly.

It is worth it to progress the above irrespective of how you view dementia.

Dementia: No Room At The Inn

General, ,

Image result for no room at the inn pictures

We had a stroke of luck on Friday morning when there was no room at the Inn.  A nearby Care Home determined that they would be unable to take Maureen for Day Care or Respite as they felt they were unable to meet her needs.  ‘Houdini’ (AKA Maureen) had already escaped from them once and also found her way into an unsupervised area of the building on another occasion. The Care Home concerned already had three escapologists in permanent care and they decided that taking another one would stretch them beyond safe limits.

The Inn being full turned out to be a blessing in disguise as Girl Friday Night played a blinder and opened up a new range of possibilities for care in the home.  The restful night that followed led to a lovely day where Maureen could only be described as AMAZING:  I hope my cyber friend Susan Macaulay won’t mind me borrowing her nickname!

Our first call in the morning was  Freeman Street Market where Maureen played a significant part in our choice of provisions.

When we moved on to Aldi she looked around for things that we really needed to compliment meals for the forthcoming week.

Later in the morning, she reminded me that we had forgotten to replace her toothbrush so we visited our local pharmacy to make the necessary purchase.

Throughout the morning we experienced Caring Cleethorpes at its best:

  • Stall holders at the Market know Maureen and go more than the extra mile to support her.
  • Staff in Aldi soon warmed to someone who takes a little longer at the till than most customers.
  • Our friends at Lloyds Pharmacy were exceptional as always.
  • Then the icing on the cake when  Girl Saturday arrived and picked up on Maureen’s high spirits to play her part in a lovely morning.

How fortunate that there was no room at the Inn and Maureen escaped ‘being put on a train again’ as she described her last visit to the Care Home concerned.  The Inn also let me off the hook as I had promised Maureen that we stand together in this: no more single tickets for our journey!

 

 

Dementia: A Star Appears

General,

Image result for A Star Appears PictureI know it’s a little late for this analogy but a star has appeared in our sky of carer support. Girl Friday Night arrived at 10 pm she will be going home at 7 am.  Maureen and I have the sleep that you can only dream of when you are exhausted.  You move quickly in these situations and I will be seeking for our newbie to be a regular Girl Wednesday Night and  Girl Friday Night every other week -she’s up for it.

Once again I have to praise our social worker for the speed of his action in adding Girl Friday Night to our Team.  He had the newbie available as soon as he called here yesterday afternoon.  Maureen really likes our Key Worker and was keen to show him that she had been sleeping in a drawer in the bedroom for the last few nights. On his advice, we managed to get one of our by one of our GP’s to rule out infection as a cause of her confusion and distress.

Refreshed from a good night’s rest we hope to be in Freeman Street Market early doors.  We both have a new found energy in our step this morning after what feels like a life-saving rest but I know that with dementia one swallow never makes a Spring!

 

Dementia: Changing Into A Lower Gear

General, Uncategorized, ,

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’

General

Image result for Vascular dementia treatment Picture

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

General, Uncategorized

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?