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: Saved By Talk Talk

Mixed Dementia,

I’ve had to pull out all the stops today to distract and redirect Maureen from her distress following the visit by our Key Worker yesterday.  Then disaster struck when our phone line went down in the morning so no music via YouTube.  I have to hand it to Talk Talk they fixed the problem very quickly and Maeve was back on the screen and her Nana was singing along and clapping after every number:

What would really put the icing on the cake now is a phone call confirming that Maeve and her dad will be visiting us in Cleethorpes very soon!

I know I’m tempting fate by posting at this time as there is still possibly a long night ahead.  However, as Carers Week is drawing to a close I want to post about the importance of ‘Listening To Carers’ tomorrow.

 

Dementia: Pain Without Any Gain!

Mixed Dementia

Image result for Stopping The Pain Picture

We are both in considerable pain this morning: Maureen is in mental anguish and I’m in physical discomfort.

Our troubles began early yesterday evening when Maureen woke from a nap completely disoriented.  Her first concern was that someone had moved our toilet facilities and there was nowhere to relieve herself.  This then moved onto distress about a missing boy and the trouble she would be in for not looking after him.  Searches around the local area were not fruitful and heightened her concerns.  My distraction strategies hardly made any difference and she was far from settled as I went to bed at 10’o’ clock.

At two ‘o’ clock this morning Maureen disclosed that she was concerned about yesterday’s visit by our Key Worker and a colleague.  They were progressing a DoLS Application.  Maureen is trying to work out what was behind his searching questions? Such thoughts must be so disturbing to someone who feels professional staff have the capacity to lock her up and throw away the key.  I think she may have grasped that arrangements to deprive her of her liberty are about to be formalised.

I will be seeking a meeting with our Key Worker to look at how we address the distress that has followed his visit.   I will also be requesting an urgent appointment with my G P to seek some resolution to the pain in the right shoulder.  There are some immediate measures I can take to deal with my pain: Maureen’s discomfort is not as easy to address!

 

Dementia: A Pilgrimage To Paddington

Mixed Dementia

Image result for paddington station picture

After a great deal of thought, I have decided not to take Maureen with me on my ‘Pilgrimage to Paddington’ a week on Friday.  This has been a hard decision to take as  I wanted my wife to meet two people who have had a significant impact on my life.  Tom Schuller was my supervisor when I completed my dissertation for Master’s Degree at Warwick University and has recently developed ‘The Paula Principle’:

Irving Kirsch’s research was fundamental in helping me to understand that antidepressants were not the solution to my periods of depression:

When Irving’s train pulls in at Paddington Tom is likely to be nearby but Maureen will be in Ashgrove Care Home.  It has eventually been a ‘no brainer’ to leave her in Cleethorpes while I meet my two distinguished colleagues.  It would have been lovely to have had her by my side but the risks associated with a trip to London are insurmountable at this stage of her condition.  We have also made a similar judgement about organising 30 hours of continuous care in our own home with people who have never previously supported Maureen.  We are optimistic that 4 nights in Ashgrove is the kindest way forward and that her colleagues on the ‘Escape Committee’ will welcome her back with open arms.  It will also give me a much-needed opportunity to recharge my batteries.

This morning my pilgrimage is to CleeMedical Centre:

Map of Clee Medical Centre Grimsby Picture

There would have been little point understanding that ‘antidepressants are no better than a placebo for mild to moderate depression’ (Kirsch) unless CMC had a progressive approach to treating depression. Doctors monitored me after I stopped taking mirtazapine, even though a psychiatrist during a spell in a Psychiatric Unit  had advised I had a ‘chemical imbalance’ and needed medication for the rest of my life.  I was also referred to the Practice Counsellor and Paul Martin has helped me to think my way out of depression. My noon meeting with him today is part of a package of measures to keep me mentally well at a time when it would be understandable for depression, once again, to feature in my life.

There are mixed feelings about the visit of our Key Worker and a colleague this afternoon as it represents another milestone in the progression of Maureen’s condition. They will be progressing a DoLS application to deal with her safety in the community.   Initially, I had seen this as a retrograde step but now I understand depriving Maureen of her liberty is necessary to protect her Best Interests and enable her to remain in her own home. This afternoon’s meeting will also be an opportunity to review our Support Packages to ensure that they are meeting our needs.

Footnote: The whole idea that ‘chemical imbalance’ is causing depression has been called into question by Kirsch’s research.

 

Dementia: More In-Home Respite

Mixed Dementia

Image result for Respite Break Dementia Picture

Girl every other Saturday and Sunday put in two excellent shifts at the weekend. Maureen is always pleased to see her and happy to help her around the house.  When I returned from the Leisure Centre on Sunday my senses were aroused on two fronts. Firstly, by the aroma of Sunday Lunch well underway.  Secondly, Maureen looking good with a change of clothing and hair washed following a shower.  What a return from an investment of additional hours personal and domestic care over the weekend.  I’m confident that this afternoon will see even more value for money when Girl Tuesday afternoon puts in another shift.

I almost messed thing up last week by plunging the new kid on the block in at the deep end by mentioning new underwear to Maureen.  Thankfully, Nat King Cole rescued the situation and by the end of her shift, the two girls were good pals.  Her later start time this afternoon will hopefully set us off on an even better the track.

My sister has offered even more respite this coming Saturday.  She and her husband are renting a cottage a few miles away and will be popping into see us during the week. When she said that they will be coming on Saturday and not bother about lunch as they will be bringing it all with them I thought that is what you really call respite: good company and lunch into the bargain!

GREAT NEWS:  I began cognitive stimulation therapy in the community yesterday and as you will see <HERE> we got off to a flying start.  If I keep my nerve and listen to Maureen I’m confident that her progress will turn the heads of our Multi-Disciplinary Team and encourage them to consign Prescribed Disengagement (Swaffer) to the history book!

 

Dementia: ‘Buzz Off Blackie’

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Maureen was in good form yesterday and kept me in stitches for much of the day.  The best giggle of the day didn’t come from watching her dancing whilst holding onto the washing line: it was when she saw off ‘Blackie’.  She said ‘they were playing chase’.  How wrong I’ve been when we have been walking around the streets looking for a lost boy that’s she’s been playing with – it’s her tame blackbird she’s been talking about.

Things were not looking so funny after a late evening walk along the beach.  When we arrived back home she refused to get out of the car as I had brought her to ‘a strange house’.  I left her by herself for a while then took her out for another ride around.  Then the prospect of a cup of tea eased her into the house.  She was fast asleep on the sofa before she had time to drink it.  I bet she was dreaming of chasing that bird around the garden!

When Maureen woke shortly before midnight she was ‘giving me the bird’: telling me to go away in Anglos Saxon.  She was also making it clear that she didn’t think my parents were married when I was born.  How on earth could I be any other when I ‘kept stealing her car and never took her out in it’.  A couple of hours later and my status had changed as she searched for somewhere to sleep before deciding to bed down on the sofa in the lounge.

At six ‘o’ clock this morning Maureen was clearly about to tell me to ‘Buzz Off’.  Finding her freezing cold and my slippers adjacent to the pedal bin in the kitchen I decided upon emergency action to warm her up on the sofa:

Once I presented myself as her Tea Boy with the first cuppa of the day I knew this lad would not be given his Marching Orders just yet!

 

 

Dementia: Maureen’s Left Foot

Mixed Dementia,

Image result for My Left Foot PictureOur day didn’t go at all as we planned yesterday.  Rain stopped play as far as our trip to Louth was concerned then Maureen’s left foot led to us being housebound until early afternoon.

Maureen’s left foot rarely feels comfortable following her stroke.  It is frequently cold and yesterday’s remedy, two pairs of thermal socks, caused immediate problems.  She sat for quite some time trying to find a way of easing a foot that was probably size eight into a shoe that was size seven.  Eventually, she gave up on the idea suggesting that roller skates or a pushchair might solve the situation.  It is refreshing to hear that she can still think outside the box.

I was really relieved when Girl every other Saturday arrived at noon.  I had misread a letter from her Care Agency and expecting a  new kid on the block I had cancelled the call.  What I had missed was that this change is going to take place next week because the other weekender is no longer working for the Agency.  This is a real pity as we will be losing someone else who Maureen liked and will be facing another period of uncertainty.

Maureen’s problems with her foot faded once she was in the company of another woman.  She spent the next couple of hours chatting, joining in with preparations for lunch and tidying up the house.  How fortunate our Key Worker realised that I had got it wrong and did not cancel the call!

Our evening stroll took the normal circular route with me commenting on landmarks as we walked around what I hope is becoming familiar territory.  I didn’t let go of Maureen’s hand during our walk.  However,  I’m hoping I might be able to relax a little as we repeat the exercise.  I have to play this one very carefully as I have warned off engaging in any ‘positive risk taking in the community’.  It would be reckless for me to go down this road until I have cleared my strategy for giving Maureen an element of freedom with professional staff.

We finished the evening off with ‘The Great Parsnip Hunt’.  If they are not on the plate for Sunday Dinner the Resident Chef would be on a Final Warning.  As our local Spa Stores rarely stocks this precious vegetable we ventured into Cleethorpes to ensure that they will be on the menu today.  It was good to see that Maureen didn’t appear to feel out of place in the unfamiliar surroundings. of Cleethorpes Coop.

It’s a fairly bright start to the morning and we haven’t any fixed plans today.  If the going is good I might pop to the Leisure Centre and leave the girls to prepare vegetables for the return of the Resident Chef.  I just wonder if I could ever teach Maureen to Chef again but I think forgetting how to cook might just be a ‘Cunning Plan’ on her behalf!

Dementia: Fabulous Friday

Mixed Dementia,

Image result for fabulous friday pictures

Lots of good things happened yesterday hence Fabulous Friday:

  • Girl Friday put in another sterling performance engaging Maureen throughout her visit.  We will miss her when she goes on Maternity Leave.
  • Maureen’s Occupational Therapist called to offer support on cognitive stimulation.  She assured me that I was ‘doing all the right things’ and warmed to my ideas on community cognitive stimulation.  We have agreed to touch base at the end of next week to review progress on CCS.
  • Two Community Support Officers called following a chance meeting with their sergeant the previous evening.  They have us on their radar and will support us in all sorts of ways.
  • Maureen really came good in an evening visit to our local Spa Stores.  She reminded me that we needed sugar and looked very comfortable as we searched for bargains.

We had planned to go to Louth today as Maureen was keen to add to her wardrobe.  Unfortunately, after a beautiful sunrise rain has set in but the weather is not going to spoil our day.  If it remains wet we will call to see the friendly stallholder in Freeman Street Market.

Terror in Britain: What did the Prime Minister Know?

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I’m posting rather early this morning as I didn’t think this should wait. More local news of a good day in our household will be posted as normal at 7 am.

Editor's avatarOffGuardian

by John Pilger

The unsayable in Britain’s general election campaign is this. The causes of the Manchester atrocity, in which 22 mostly young people were murdered by a jihadist, are being suppressed to protect the secrets of British foreign policy.

Critical questions – such as why the security service MI5 maintained terrorist “assets” in Manchester and why the government did not warn the public of the threat in their midst – remain unanswered, deflected by the promise of an internal “review”.

The alleged suicide bomber, Salman Abedi, was part of an extremist group, the Libyan Islamic Fighting Group, that thrived in Manchester and was cultivated and used by MI5 for more than 20 years.

The LIFG is proscribed by Britain as a terrorist organisation which seeks a “hardline Islamic state” in Libya and “is part of the wider global Islamist extremist movement, as inspired by al-Qaida”.

The “smoking gun” is…

View original post 1,478 more words

Dementia: Rescued By The Police Again

Mixed Dementia,

Image result for Humberside police pictureAfter we had placed our cross on the ballot paper last night a local Police Officer became my hero once again. On a previous occasion, his team had found Maureen when she got lost on a nearby Holiday Camp.  This time, he helped to bring her down to earth after a period of chronic uncertainty after a visit by her son.  As soon as she heard his voice she remembered him and this shifted her reality from the confusion concerning events earlier in the day.  The added bonus was that he is going to arrange for one of his officers to help me process the Herbert Protocol.

Maureen’s presentation yesterday afternoon led me to the conclusion that family members who are only able to visit us occasionally are now on ‘Mission Impossible’. It must be difficult for busy visitors to grasp how to play it when Maureen puts herself in the Hostess Mode.  They are unlikely to see through her act and understand what it takes out of her to put on a special performance for their benefit.

Half an hour after her son left it became clear that Maureen had no idea who he was.  An hour later she had no recollection of having a visitor – her focus was on ‘a missing lady and catching a plane’.

I think there is no alternative than to run with what happens when visitors from a distance away visit.  It is becoming Mission Impossible to help them to understand the progression of Maureen’s condition and resist behaving as they always have.  Thank goodness you can always depend on the Boys in Blue when you need them!

Footnote: My Good Music page will give you a hint as to how we voted last night.

Dementia: Moving Ahead

Mixed Dementia

Pravs J - Keep Moving Ahead

I have decided not to tempt fate by calling yesterday ‘Wonderful Wednesday’ because as soon I sat on the physio’s table at 8.30 am I  knew that it was going to be a good day.  In capable hands once again, I realised that the sleepless nights because of severe pain in my right shoulder were coming to an end.  My destiny on that front is now in my own hands; do the exercises, pay for private treatment and all will be well.  A couple of hours later things became clearer and got even better.

Harrison House is across the road from St Hughs Hospital and the cafe was a sensible place to meet our Key Worker.  We often meet there as it gives me the opportunity to thank the staff who supported me during my darkest hour.  Yesterday, I had the pleasure of meeting a Psychiatric Doctor who had recently become a Consultant: he was genuinely pleased with my congratulations and my ongoing praise for his support.

As always, I  had a productive meeting with our Key Worker.  He helped me to see that my panic over the DoLS issue was understandable but rather misplaced.  Although Maureen’s liberty has to be restricted at this moment in time (see below) it is a means of her remaining safe in her own home.  We also discussed a number of other matters in relation to our Support Package which it would not be appropriate to outline here.

The cream on the cake came during late afternoon with the arrival of a builder to look at the plans for our Day Room.  He had been recommended by a tradesman that we trust and I immediately liked his style, especially with Maureen.   As soon as I explained our situation his empathy and understanding was clear: his personal experience obvious – his mother passed away following a period of dementia.  I hope it won’t be long before he’s ‘digging out’ to lay the foundations to improve the state of ‘Maureen’s Care Home’!

Footnote:  The current Occupational Therapy assessment is that Maureen is not safe in the community unless she is escorted.  I’ve had a successful career in the field of Lifelong Learning and we need to consider if it is possible for me to teach Maureen how to become safe in the community once again.