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: The Tablet Tinderbox

Mixed Dementia, ,

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Maureen and I have never been a couple who have taken any medication willingly.  We are great believers in ‘physician heal thyself’ and won’t even take painkillers unless the discomfort becomes unbearable.  Considering Maureen has had a stroke and has suffered from high blood pressures for years the medication she has to take is minimal:  one tablet in the morning and another in the evening.  She has refused to take a statin and her G P and I have given up on this battle.

Despite being told on numerous occasions that she is on her current medication for life Maureen still wages a campaign to be tablet free.  She took up the mantel again last night and refused her early evening medication – questioning if I had the authority to give her tablets.  Four hours later she woke me up from my slumbers worried that she had missed her tablets.  When I offered them to her she refused them once again as I was not a chemist or a Doctor.  Two hours later I heard her crying for her mum via the baby alarm.  When I made it downstairs she was terrified that she had missed her tablets and had put her life at risk.

Earlier in the evening, there had been shenanigans over cleaning her teeth.  Neither of the toothbrushes I presented belonged to her and were being used by others.  This is not an unusual series of events.  It is possible that not cleaning her teeth and finding it unpalatable to use a mouthwash are contributing to having a sore mouth and tongue: a condition that has now become chronic.

This morning a new challenge presented itself –  how to get out of the bath quickly to attend to my distressed wife.  Soaking in an Epson salts the bath is great but it is not easy to get in or our since my hip replacements.  I slipped and cursed at my first attempt: perhaps doing more harm than the good of the bath.  When I eventually arrived at Maureen’s side she was ‘wanting to go home to Nottingham to be with her family’.  She cannot understand ‘why she is being imprisoned here as she has done nothing wrong’. Today is a good day for distraction and redirection as a trip to Freeman Street Market is a fixed feast.

My first scheduled long weekend seems a very long two weeks away at the moment.  My accommodation at the Buddhist Meditation Centre in Pocklington is booked, as it is for the remainder of the year but home-based care for Maureen is not yet in place.   Her challenging presentation shows no sign of letting up and leaves me wondering whether I should have stuck to my guns on Thursday.  My wavering on the need for the immediate respite continues to put me at risk of Carer Burnout and was certainly not in my Best Interest!

 

Dementia: One Small Step

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The decision at yesterday’s Best Interest Meeting represents one small step in maintaining Maureen’s wish to remain at home and mine to have a life outside of being her Care Partner.  Our Key Worker is now charged with putting additional care in place so I can have a break one week in four from 10 am on Friday morning until 1 pm the following Monday.  I’m hoping that such arrangements can be put in place as soon as possible.

Unfortunately, the start of the BIM was delayed and did not finish on time.   Following the meeting I declined an opportunity to explore any further issues with the Chair and Decision Maker as I wanted to try to return home on time.  What I hadn’t realised was that my early departure was in vain as  Girl Thursday and our Care Agency already had the matter in hand.  I await the minutes of the meeting with interest and look forward to working with our Key Worker to carry out the spirit and intention of our discussions.

The domestic scene was not very pleasant last night with Mrs Dementia in full flow.  I was told in no uncertain terms that if I trespassed into the room that she was sleeping in she would ‘scream the house down’.  The thought of the peace and solitude of a long weekend break helped me to make it through another long night of Musical Beds!

There’s no peace for the wicked this morning as Maureen tries to make sense of her life.  She has been talking to me for some time about how she thought others people have been controlling her life following her stroke.  As her Care Coordinator once said ‘with vascular dementia, you think that you have got it then it changes’: well I never!

Dementia: It Has To Be Gentle Persuasion

Mixed Dementia,

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The Best Interest Meeting to discuss Maureen’s future care and accommodation is now hours way.  It is an opportunity for family members to get together with the Multi-Disciplinary Team to discuss the best way forward.

This morning Maureen has returned her theme that she doesn’t live here.  Yesterday morning she was talking about going back to Nottingham to live with her sister.  During the afternoon she was telling her aunt that she would like to go back to Coventry where she has lots of friends.

I am never clear who Maureen thinks I am.  On occasions I’m her husband, at other times I am her dad, grandad, ex-husband, or manager of this Care Home.

Maureen no longer knows what time, day or season it is.  She has been worrying this morning that she has no clothes that will be warm enough for this time of year.  Whenever she wakes up from sleeping it is time for breakfast, even after a late evening nap.

This morning’s meeting is an opportunity for all parties to put their cards on the table and for the Decision Maker to determine Maureen’s future care and accommodation.  I’m pretty tired at the moment and my immediate priority is to get a break from my caring responsibilities.  Holmfield House is primed to receive Maureen this afternoon and subject to assessment could accommodate her for a week.  However, I do not think it is in our Best Interests for me to trick her into a week in a Care Home: I’m quite clear about that!  What I still have a nagging doubt about is whether a holiday in an Adult Only Hotel would be a better option for sustaining our close relationship.  Once again the problem remains on how we shift Maureen from the sofa.  Whichever option is decided upon: gentle persuasion has to be in our Best Interest rather than trickery!

You will gather that there is uncertainty about where Maureen will sleep tonight.  We often play Musical Beds here and last night we slept well together in the marital bedroom: taking the single bed out of the lounge may have worked!

 

Dementia: ‘I’m Not Lost!’

Mixed Dementia, ,

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Maureen has thrown down the gauntlet about being allowed to be out on her own.  She was reluctant to accompany me to the corner shop yesterday afternoon and when I returned she had gone out.  When I went to find her she said ‘why are you looking for me I’m not lost?’ The interesting thing is that she was walking around the Court that I had encouraged her to follow the previous afternoon.  I think I now have to pluck up the courage to let her go off by herself and wait in the house until she returns.  I’m wondering if it is a good time to suggest using the Digital Tracker that I bought some time ago and Maureen declined to use.  I also have a similar dilemma over changing our sleeping arrangements’

I’m not sure if sleeping on a single bed in the lounge is achieving anything.  What it may be doing is encouraging Maureen to sleep on the sofa rather than retiring to a bedroom. My inclination is to take the bed back upstairs – yet again – and see what happens.

Maureen may not feel that she is lost when she is walking out by herself but I often feel spoiled for choice in how to respond to her presentation.  My Admiral Nurse is on holiday at the moment and I have chatted to one of her colleagues a couple of times already this week.  She has suggested reframing my suggestion that we need a holiday.  If Maureen takes up the bait it would be interesting to see how we cope with a couple of days in new surroundings.  The plan is to be on holiday close to the family members in the Midlands who Maureen is crying out for more contact with: predominantly her granddaughter.   What a shame it will not be possible to meet her parents: I’m sure ‘Union Jack’ and I would have had lots to talk about and I would have loved to have met his ‘Diamond Lill’.

While I’m on the subject of holidays we will need a World Cruise to thank all the people who support us via this blog.  I’m particularly grateful to Di Brooks this morning as she suggested taking an Epson salts bath which has been so refreshing.  I would recommend anyone to read her Blog where she shared her experience of being a Care Partner to her late husband so openly.

It is my six weekly appointment with my Counsellor this morning.  Ironically it is exactly 24 hours away from the Best Interest Meeting.  How fortunate I am to be able to chat over the challenges in my life with someone who has such an extensive understanding of dementia.

 

Dementia: Walking In The Sunshine

Mixed Dementia,

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Maureen excelled in the beautiful sunshine that we both enjoyed here in Cleethorpes yesterday afternoon.  I could hardly hold back the tears as I saw my lovely wife walking and talking in the streets of Humberston.

She was a little nervous as I encouraged her to walk around Royal Court alone.  I was able to watch her until the corner and shout words of encouragement as she hesitated at the sound of a barking dog but she looked back at me and walked on.  I stood rather nervously at the other end of the Court until she came into sight.  As soon as I saw her I shouted words of encouragement and was pleased when she returned my greeting.

There were lots of people out in their front gardens as we continued on our stroll.  We stopped and chatted as we ambled along and Maureen was keen to interact with the gardeners.  I think her enthusiasm was sparked by making new acquaintances: she hates it when she can’t remember who people are.

Towards the end of our walk, a gentleman recognised that I was wearing a Coventry City shirt and we stood for almost half an hour chatting to him about all sorts of things. Maureen loved talking to this man as she was able to contribute to the conversation about Coventry and coal mining.  He had been a surveyor in the mining industry something that surrounded Maureen in her childhood.

I’m not sure what the weather forecast is for today but it is another day when opportunity knocks as I have cancelled the carer sit as it would have been a newbie.  If the sun shines on us today who knows what we might get up to.  My money is on Maureen proving the doubters wrong as confidence may be the issue on some fronts rather than capacity.   If I’m patient and continue with positive risk taking my money is on the butterfly emerging from her chrysalis as spring moves into summer.

The only downside of yesterday was that Girl Monday/Friday was still on holiday.  This means that Maureen won’t hear her ‘good news’ until Friday but I understand she may be already be booked in for babysitting.  It also looks likely that our longest serving carer will not be at the Best Interest Meeting on Thursday and I have therefore suggested another postponement until she is available.  The way things are going she might even have to bring the baby to the meeting!

 

Dementia: It’s Good News Week

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  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

Dementia: Still Riding The Roller Coaster

Mixed Dementia,

Image result for Riding The roller coaster of dementia picture

Amazing Susan Macaulay never said a truer word than in her comment yesterday:

‘Such a roller coaster 😦‘.

I had one heck of a ride yesterday often finding it difficult to console Maureen when she was frightened out of her wits.  How on earth she coped when she was even unclear who the only person who was here to support her was I will never know.

Despite feeling exhausted I have decided to try to tough it out until the Best Interest Meeting on Thursday.  Although I have never been one for more than The Walzer’s I need to ‘stay on the ride’ until I can get together with our Multi-Disciplinary Team to discuss where we go from here.

Dementia: Lost, Confused and Bewildered

Mixed Dementia,

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We are both struggling this morning.  Maureen clearly doesn’t know where she or who I am.  A short while ago she told me that lots of men were telling her they were her husband.  She also keeps asking me if we are going to go home today.  These themes are not new but she appears to be more frightened than I have ever seen her as she tries to deal with her confusion.

I’m also bewildered this morning by two things that appear to be lost.  I have spent ages looking for one of Maureen’s favourite slippers.   They are particularly precious to her as she bought them with some money her sister sent her shortly after her stroke.  I have hunted high and low in all the normal hidey-hole’s and they are nowhere to be seen.  I’m also similarly mystified where a plastic container with all the remedies for Maureen’s sore mouth and tongue has gone.

Maureen is now spending an increasingly amount of time being lost.  Her ability to recall is minimal – on rising this morning she became very distressed that she couldn’t find her way back to where she had been sleeping.  She continues to struggle to find her belongings and the accusations about people stealing her things is now a daily occurrence.  These aspects of her current presentation would hardly be helped by moving her out of her current surroundings into a Care Home so that her Care Partner can have a much-needed rest: home based care remains the safest option!

Dementia: A Timely Reminder

Mixed Dementia,

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Ode To A Care Giver

From Wellspring Village Residents at Brightview Concord River

Always be patient for those in need

You must be a good listener, a good listener indeed.

Always be willing to lend a hand

And empathize so you understand.

Always remember the success I’ve had,

So don’t get discouraged or feel bad.

Put yourself in our place each day you’re here

Speak slowly and calmly, keep communication clear.

Join my reality and focus on what I can still do

Because I’m still here, still here with you.

Ends

Tracey MaxfieldThe above Ode was sent by Tracey Maxfield (pictured right), one of my contacts on Linkedin.  It is typical of the support we receive from all over the world since I started blogging.  I think she must be psychic as the reminder to ‘speak slowly and calmly, keep communication clear’ was really needed today.   I was far from calm when Maureen was missing from the marital bed earlier this morning.  In fact,  I panicked for a while until I found her safely tucked up in the single bed that I regard as ‘my den’ in the lounge.

Today is the second Friday in a row that I have decided not to have a break from my kitchen duties by having fish and chips at a local Care Home.  Another invitation to eat out would have been declined by Maureen today as she knows I usually have haddock and potato wedges on the menu.   What is reassuring is that staff in local Care Homes’understand that Maureen prefers home cooking and ‘where I’m coming from’.  They accept that for Maureen to spend time in their company would not be in either of our Best Interests at the moment.  What a pity that some members of our Multi-Disciplinary Team may well not see it that way when Maureen’s Best Interests are formally discussed next Thursday!

Dementia: We Are Both Spitting Blood

Mixed Dementia

Image result for spitting blood picture

Maureen has been spitting blood this morning as she tries to address the ongoing soreness in her mouth.  I hope I’m able to encourage her to keep cleaning her teeth and use a mouthwash to try and eradicate what has become a chronic condition.  My blood spitting was of a different order yesterday as I explained my concerns to our Key Worker about how Maureen had been mistreated in the last few years.

There were clear signs that there was something wrong with Maureen’s cognitive and functional capacity well before her stroke.  Unfortunately, family members were in denial and the medical profession was reluctant to explore my concerns.  A belated diagnosis of stroke three years ago left it far too late for any kind of medical intervention.

Maureen’s eventual diagnosis of vascular dementia led to discharge from the Memory Service. As one of their Consultants explained to us ‘you have to accept a new reality’.  What concerns me as the Best interest Meeting draws closer is that reality has hardly been person-centred based on Maureen’s life experiences.  All too often, the focus of professional staff has been on the disease and not the person: with a medical model lingering in the background.  Their one size fits all approach to supporting Care Partners fills my mouth with an unpleasant taste with the BIM a week away!