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: Take A Breath With Teepa

Mixed Dementia, ,

The other day a relative asked me for some advice the on how to provide support that would be helpful to Maureen during his visits – so I pointed him in the direction of Teepa Snow:

I have had to follow Teepa’s advice many times during the last 24 hours.  I am the only person who has been able to persuade Maureen to take a bath or a shower in the last couple of months.  There was a heavy price to pay for my success yesterday as Maureen struggled to accept that she had chosen to spend the day in her dressing gown without anything underneath.

Early this morning, things were very challenging with Maureen becoming hostile as she tried to resolve a clothing crisis.  She became rather uncomfortable when she put the leg of her pants around her waist and began lashing out at me in frustration.  Help arrived in the form of Night Rovers as things had cooled down.  By the time that the ladies from arrived Maureen had pants. PJ bottoms and a T Shirt on for the first time since her Sunday morning bath.

One of the problems at the moment is that Maureen is finding it difficult to hear or understand what I believe to be straightforward instructions.  Taking deep breaths along with giving simple instructions has to become automatic from now on.

Slightly more than deep breathing might be needed this morning as all windows are being replaced at the front of the house. At the same time, our builders are into the final week of the Sun Room.  It’s another one of those occasions when there is no gain without pain.  Once our window fitter is done, Maureen will no longer be looking through leaded windows which remind her of a prison cell.  The Sun Room will mean that Maureen’s Care Home is fit for purpose at long last!

Dementia: ‘Two Things We Need To Do’

Mixed Dementia,

In the second of my weekly Buddhist teachings I offer a simple message  from Dekyong:

 

Update:

Maureen ‘brought the house down’ yesterday singing along to the Sound of Music.  Our builder even switched off Radio One and stopped plastering once he heard the Sound of Maureen.  It was lovely to hear her accompanying Julie Andrews as her focus shifted from her thoughts about a dead baby.

She is in good form this morning after relaxing in a warm bath.  I have no idea how home carers are expected to get a service user bathed in a half an hour call: Maureen is still in her dressing gown and unfed an hour after I began coaxing her in the direction of the bathroom.

Dementia: Remember Me

Mixed Dementia

This is our song of the week:

In the week that I have mentioned the work of Dr. Dan Nightingale, this song gives me room for optimism.  Maureen had never heard of Christie Hennessy until some time after her diagnosis of dementia.  If she can sing along with Christie, almost word perfect surely I can help her to remember that she did everything she could when her child died almost 60 years ago.

I’m hoping that emptying her bookcase in the dining room will give Maureen purpose this morning.  This will then enable us to strip the remaining wallpaper so the room can be skimmed in a week’s time.  The only wallpaper that will remain in the dining room is the wall that was decorated by Maureen several years ago.

As we labour this morning I will remind her who taught her to decorate: her granddad. She has such beautiful stories to tell of her childhood that such memories might help her to cope with her grief.

Dementia: Don’t Grieve Conceive!

Mixed Dementia, Uncategorized, , ,

Posted at 2.00 am:

 

Image result for Don't Grieve Conceive picture

I have just phoned the Konar Suite to speak to a Nurse to check whether my support to Maureen has been appropriate.  She was in floods of tears a short while ago because ‘they had found a dead baby’.  This was the second time this week that she has been overwhelmed with this thought.

When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’.  Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming.  She didn’t know that Maureen’s second born had died at three months when she was twenty-one.  I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.

Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7.  This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house.  She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution.   Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a  replacement for a young child who never made it to his first birthday.

If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life.  She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!

Footnote:  Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!

 

 

We are the Disrupters

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George Rook always telling it as it is. I meant to Reblog this yesterday but our Adventure meant an early morning departure and lots of things didn’t get done!

georgerook51's avatargeorge rook

We are the disrupters!

IMG_0305

You know, the thing about being a volunteer activist in healthcare is that it’s sooo frustrating.

There are various mantras around…

Nothing about us without us…

Do it with us not to us…

But we’re always fighting against an imbalance of power. Against a hierarchy where we are at the bottom, if even not in it at all.

We attend meetings where the agenda is set by the organisation, the hierarchy.

We make our points, we challenge, we suggest, we want to “work with” to get change.

And we’re told…

Well that’s not altogether true…

We can’t do that…

Our staff are sick of action plans, we can’t do any more…

Staff are sick of innovation and change projects…

So we are squashed into submission, because of course we don’t have the power.

Most healthcare (and other) organisations are old power hierarchies. They do to people…

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Dementia: ‘Think Of Yourself’

minimising distress,

Image result for Think of Yourself Picture

During our adventure yesterday the Activities Organiser at my mum’s Care Home begged me to think of myself.   I have known this woman for a long time as she was a mature student at a local Community College where I managed adult learning opportunities.  She asserted that I needed to look beyond caring for Maureen: that something would happen that would mean I could no longer look after my dear wife.

Our visit to see my mum followed calling in to see my brother in his Nursing Home.  He only woke for a brief period of time as we sat by his side doing all we could to gently wake him.  As always he treated us to his beautiful smile and chuckled briefly before he drifted back to sleep.  Perhaps his morning shower had worn him out as he seemed exhausted; continually yawning, as he slumped comatose in his favourite spot in the dining room.

Maureen loved seeing my brother: remembering our last visit when we both danced holding his hand.  Unfortunately, we couldn’t put on a similar performance yesterday but we managed to give mum her usual treat.  She campaigned for a trip out as she always does when you go to see her.  The Ice Cream Man was not on duty at a local park but the Cafe was open and she assured me that her kit-kat special would not spoil her dinner. When I took her back to her seat in the Resident’s Lounge she begged me not to leave her, so I told the familiar white lie that I would be back shortly.

When I look back at what I did next I’m  not sure who I was thinking of – it certainly wasn’t Maureen.  We made it to a local pub on time where I had arranged for her son to meet us along with her granddaughter and son in law.  Their arrival was staggered and Maureen had some special time with her son before the others arrived.  She clearly loved seeing them all and the attention she got from one particular friend in the pub.

Maureen is worn out and very confused this morning.  I will never repeat what I coaxed her into yesterday.  We are both too old to endure long car journeys and busy schedules in Coventry or anywhere else.  It isn’t myself I need to think about it is both of us!

Maureen is not at all pleased with me this morning.  She thinks I’m conspiring to get rid of her and stealing all of her possessions.  I’m not pleased with myself when I reflect on what I coaxed her into yesterday: particularly how little time we spent with my brother and mother. How can I justify rushing way from my nearest and dearest, who both have dementia to meet with other family members?  If that had happened to Maureen I would have been fuming!

There is one positive outcome from our adventure yesterday: it has strengthened my resolve never to put Maureen into a Care or Nursing Home!

 

Dementia: Adventure Time

Mixed Dementia

Image result for adventure time picture

We had a great day yesterday when Maureen was amazing.

She is game for an adventure this morning so we are off on one.

On some days you just have to go for it!

More details later……

Dementia : A Nightingale Sang

minimising distress

Maureen loves Nat King Cole and would sing the above number word perfect.

How wonderful if another Nightingale: Dr Dan gives us both something to sing about:

Dementia: Is Dr Dan The Man?

Mixed Dementia, , ,

Some of my cyber friends have pointed me in the direction of Dr Dan Nightingale.   From my limited understanding of his work, it appears there may be an alternative to Trazodone: the medical solution to Maureen’s presentation.

Maureen’s behaviour became extremely challenging yesterday afternoon when she took off saying ‘she didn’t like it here’.  I followed her around the local area listening to a familiar tale of me ‘robbing, deceiving and abusing her’.  At one stage she confronted another woman who I had never seen before about her involvement in the affair.  The positive about this incident was that she got into the car after reprimanding this poor woman.  An hour later, it took the involvement of two support workers from the Home Treatment Team to persuade her to leave the car and enter ‘her house that I had stolen’.

Maureen was all sweetness and light when the HTT was here.  Following their departure, she sang along to YouTube beautifully for a while before becoming distressed about a strange man in the house.  My attempts to reassure her that she was safe had no impact so I gave her a cup of tea induced with a small amount of lorazepam.  I managed to encourage her to ‘rest her eyes’ but unfortunately by midnight she was on the attack again with a short spell of vindictiveness and sarcasm.

It is not easy to switch off and go back to sleep after seeing your wife out of control and looking menacing with a cheeses board in hand.  Therefore  I’m drafting this post as one ‘o’ clock appears on my VDU.

I’m hoping that Dr Dan will be the man to help Maureen never forget who I am and stop accusing me of being responsible for events in her life that have no connection with me.

I’m also hoping that my Buddhist teachers will help me to stop self-cherishing and recognise the spiritual lessons from this journey:

What a shame I can’t make the opening session of this Term’s meditation classes in Grimsby tonight!

Update at 4 ‘o’ clock:  Maureen wants ‘Mr Fish’ our Key Worker here to lodge a complaint that she hasn’t any underwear and the toilets are filthy.   Having listened to her diatribe for about half an hour I contacted Single Point of Access so that she could request a visit.  She wouldn’t take the phone to speak to them directly so I held it close enough for them to grasp her reality about ‘the state of play in this hospital’.   I expect a call from ‘Mr Fish’ shortly after he is on duty this morning.  I’m pretty sure he will press ahead with a Best Interest meeting so we can all get round the table to discuss how best to respond to Maureen’s fluctuating presentation.

Further, Update at 6 ‘o’clock: I have just heard a very articulate presentation from Maureen on why she no longer needs to be in this ‘Care Home’.  She makes the point that there is no incentive for them to send her home.  From her perspective, her parents are too intimidated to assert that she is well enough to go home.  She says Care Homes are only interested in making money and will keep her here forever.  From many of the things that she said I thought she had been in touch with Kate Swaffer to confirm her thesis on ‘Prescribed Disengagement’.  I just have a feeling that we might be able to harness Maureen’s fighting spirit to good effect and ‘rementia’ offers a way out of this very dark Tunnel.  Only time will tell if Dr Dan really is the Man!

Dementia: Working Overtime

Mixed Dementia,

Image result for working Overtime pictureOur builders informed me yesterday evening that they are going to work the next two weekends to finish Val’s Room ahead of schedule.  Their support to us during the nine weeks they have been on site has been exceptional and this latest move is typical of a dementia friendly business.  Maureen asks every day ‘when that man is going to clear his mess up’ but as soon as she sees him and his colleague her face lights up because she knows her interaction with them is alway’s positive.  I’m sure we will both miss them when their work is done!

I’m working both overtime and night-shift at the moment.  Maureen caught me out the other day: quite rightly pointing out that certain areas of the house were far from clean.  I hastily tidied up the bathroom and the utility room before she would use the facilities.  Then she told me that I ‘shouldn’t have to be doing such work as it was the responsibility of the cleaning ladies’.  She is right and it is time to employ someone for a few hours a week to help keep the place clean.

Monday’s night-shift was long and arduous.  Maureen was armed with a small metal table when I returned from one of my frequent trips to the bathroom.  It would have come flying in my direction if I hadn’t whistled as I entered the lounge.  My call sign saves my bacon on many an occasion: thank goodness my dad taught me how to whistle. How ironic that a few hours later Maureen thought I was her dad and asked me questions about his parents that I had to bluff on, as I had never met them!

Some of my cyber contacts have suggested that coaching is essential as Maureen’s presentation becomes more complex.   Although they often comment on my blog, along with helpful references, they are far too busy to Skype.  Therefore I have decided to revisit the issue of support from the Alzheimer’s Society:  this isn’t a time to reduce my options for coaching!

I have an appointment with Maureen’s GP this morning to discuss her reluctance to take medication that was prescribed following her stroke.  I’m hesitant to give her tablets covertly because if she caught me out it would feed her paranoia that I’m trying to get rid of her.

Our Key Worker is popping in this afternoon so that he has an up to date picture of Maureen’s presentation.  This will also provide an opportunity to open discussions on the appropriateness of our current Care Package.