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: ‘Having A Nice Day’

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Things flared up again yesterday for the second Sunday in succession.  The early part of the day had passed without incident, apart from Maureen having no idea who Girl Sunday was.  On Saturday she had asked the same carer if she was my wife!

Our adventure started in the afternoon when Maureen became concerned about the whereabouts of Granddad.  I suggested that we should go and look for him, as this gave me a welcome opportunity to ease her out of a dressing gown that she had been wearing for 48 hours.  Once she was suitably attired we traced our steps of seven days ago. Although, we didn’t quite make it to a Close where she had made such an impact the week before.

We had a lovely walk, chatting about all sorts of things, for about an hour.  Maureen seemed in a hurry and I hoped that explained her hunched stature as we made our way back home.  Once in the house, Maureen became convinced there were dogs in the rear garden and ran off through the front door.

I trailed her around the streets for some time as she tried to get away from danger.  Once we neared home, I edged her into the car as a safe haven from canine attack. McDonald’s, once again, was a game changer: with a Chocolate McFlurry easing Maureen’s sore mouth and shifting her reality.

When we returned home, Maureen danced and sang to Nat King Cole as I cooked a late evening meal.   She was in great voice and the number of songs she knew was amazing.   Shortly after we had finished eating, Maureen made her way upstairs and eased her tired body into the marital bed.  I joined her a short while later leaving the kitchen looking like a bomb site.  After reclaiming my pillow -she had all three- we both had a good night’s rest.

I’m hoping that things will settle down this week.  We have familiar Girls on duty, apart from the weekend, and Mcdonald’s is only ever a stone throw away!

Just before posting I’ve played an Ace by telling Maureen that her sister will be able to come and stay with us in the newly built Sun Room.  If her brother and his wife follow up I know that we will see a very different Maureen.  She is delighted with the prospect of the family she misses so much being reunited in just a few weeks!

Dementia: Using Difficult Conditions As Spiritual Lessons

I find this teaching particularly helpful as Maureen and I travel on this journey together. I couldn’t think of a better place to start my new approach to posting on Sunday’s.

Dementia: Steal Away

I have decided to resume posting at the weekend.  On Saturday’s I will post music that has had great resonance for us both during the week.  Sunday’s will be Buddhist teaching from YouTube that has helped me to clarify my thinking during the previous seven days.

I am starting with Steel Away as I always play it when we want to remember Maureen’s daughter.  She once asked me ‘why was I singing Paddy music?’   The above version is a rare music video and honours our pledge to remember a beautiful woman and never say we have lost her!

Dementia: ‘Feelings Matter Most’

 

When Maureen told me she was constipated yesterday she said ‘the Lady at the chemist will know what to do’.  Such responses from my dear wife confirm that she can still remember some things.  What she will never forget is how she is treated: as David Sheard says ‘feelings matter most with dementia’.  Whenever we call in at our Local Branch of Lloyds she is treated with dignity and respect by all members of staff.  As we were leaving the pharmacy yesterday Maureen to me ‘how much she liked the lady, and how helpful she always was’.

The other person who Maureen never forgets is our Key Worker.  She never remembers his name: he is currently Mr Fisher.  However, as soon as she sees him her faces lights up as she knows he will always treat her with compassion, dignity, and respect.

It is possible when Girl Friday is here today Maureen will forget who she is.  She might even ask her if she has had the baby.  She could even be hostile towards her seeing her as ‘the other woman’ – it wouldn’t be the first time.  However, none of this will be phase Girl Friday.  She knows exactly when to keep her distance: she would never have woken up with a shiner this morning!

 

Dementia: Farewell Girl Friday

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Today is the last working day of Girl Friday* before she goes on Maternity Leave.

Without Girl Friday I doubt Maureen would still be here.

She would have gone into a Care home a long while.

 

I hope we are able to give you a good send off this morning  Girl Friday.

You know Maureen: your care for her has always been person-centered.

I will always be eternally grateful for your wisdom and loving care for Maureen.

 I will never forget what you have taught me about dementia.

 

*Girl Friday has also been Girl Tuesday this week.  In the three years she has been caring for Maureen she has worked on every single day of the week.  She will understand that constipation will be playing havoc with Maureen’s presentation at the moment.  If my phone call to Single Point of Access doesn’t result in a prompt response we could both be in for a rough time this morning, which will be nothing compared to what Maureen is currently going through!

Update;  By 7 am we’ve both spoken to a Nurse we have the gear we need and expect movement by noon.

Dementia: She’s Landed A Beauty!

Image result for Black Eye  pictureMaureen landed a beauty last night and I expect to have a shiner this morning.  She thought I was trying to force her to sleep with me and lashed out with venom making contact with the area around my left eye.  Anybody who is aware of Maureen’s history will understand her fears about what can go on in the bedroom even when you are married!

It took lorazepam and two visits from the Night Patrol of our Care Agency before Maureen felt safe enough to sleep in her own home.  I’m hoping that a quarter of a tablet will mean that she has a good rest and is still able to enjoy the fresh air she loves today.

It isn’t surprising that Maureen lost her bearings last night after a tiring day with far too many people here.  At one stage we had five workmen here along with three relatives and a carer.  The various comings and going throughout the day would have drained anyone.

If my shiner is as pronounced as I expect it to be will be I will tell Maureen I walked into a door.  There is no way I want to remind her of the dreadful experiences that led to her lashing out last night: they are best forgotten.  What I will refresh her memory of is the lovely time she had with her brother and a beautiful walk we had around the Boating Lake after another visit to McDonald’s.  I might even take her for yet another Raspberry McFlurry today because we did ‘have a nice day’ but oh what a night!

Maureen is very confused this morning: at 8 am I will telephone Clee Medical Centre to request a home visit for a review of her physical health.

Dementia: Keeping The Pressure On

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It took three heating engineers to replace worn out radiators yesterday.  Maureen must have realised there was no gain without pain and ended up serenading them with Happy Talk as they worked around her in the lounge.  This was a very different Maureen to the one they had heard earlier when she let rip at Girl Tuesday accusing her of all sorts of misdemeanors.  I joked with the owner of the company that we wouldn’t charge him too much for helping his men to become dementia friendly.

The men will be here shortly to start the process of bringing water to our shower room and heating to the Sun Room.  They will be joined by an electrician at noon who will begin his first fix.  If everything goes according to plan the New Wing of our Care Home might be completed in two weeks.

Our heating system is pressure sensitive if it falls below 0.5 bar it will cut out.  That is an issue that we can now put behind us as our central heating is better than it has been for years.  Outdated radiators have been replaced and with most other things in hand concerning our extension, it is time to focus on the approach to supporting Maureen.  I need to keep the pressure on for clarification on her diagnosis: is her dementia predominantly vascular or  Alzheimer’s?  There also needs to be a consensus on a treatment plan that is streets away from Prescribed Disengagement (Swaffer).  I only wish I had another two good men or women at my side!

The other area where I need to keep the pressure on is to encourage family members to visit more often.  Maureen was a revelation when her brother and sister in law were here yesterday.   She loved talking about the good old days and being with people who she knows love her dearly.  They are popping in again this morning before their homeward journey to Nottingham.

Dementia: Trazodone – No Thanks!

 

 

Image result for No thanks PictureIt would be tempting to start Maureen on Trazodone after the events in the early hours  This medication has been  prescribed by a Specialist Doctor who has assessed Maureen and knows what lies ahead:

  • Maureen waking in the early hours not knowing who I am and accusing me of keeping her here against her will so I can have my wicked way with her.
  • An hour or two later she waking again wanting to go home but cannot find any clothes to wear.
  •  Having accidents after using the toilet and ending up in wet clothing.
  • Letting me have it with both barrels until she runs out of steam and falls asleep

I have been advised that putting Maureen on Trazodone will ‘make my life easier’ or ‘to let the Services do their job’  – an inference that there is no other way than to open the bottle.

What stops me from giving Maureen the fix is that from my perspective Trazodone is a one way street to a chemical cosh.  In no way is that a criticism of the Services that are trying to support us: it is a rejection of a medical model for dealing with dementia that is far from person-centered.

Maureen is sensitive to most medication: one tablet of citalopram put her in hospital.  The only blood pressure tablet she tolerates is lisinopril: she has had adverse reactions to any others that have been tried.  The passage below is almost a Black Box warning for someone with dementia:

‘Common side effects of trazodone include:

  • Headache.
  • Muscle ache.
  • Nausea, vomiting, loss of appetite, or stomachache.
  • Constipation or diarrhea.
  • Loss of interest in sex (erectile dysfunction in men)
  • Dizziness or loss of balance.
  • Dry mouth or dry eyes.
  • Numbness, burning, or tingling sensations.

 

Subjecting Maureen to Trazodone covertly is something she would not tolerate in any shape or form.  Therefore, there has to be another way to deal with this aspect of her current presentation.  She had a ‘Sofa Day’ yesterday: that is really something to focus upon!

No medication will quieten things down when plumbers arrive in number around 8.30. They will be making a lot of noise as they begin to create our new shower room. I’m not sure how I’m going to hold the fort until Maureen’s brother and his wife arrive mid morning.  Perhaps, the ensuing racket will persuade to get off the sofa and she will sleep like a newly born baby tonight!

 

Dementia: No Pain No Gain

Posted at 5.30 am – a further post is likely later.

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There is little doubt that living on a Building Site is continuing to distress Maureen.  She made that clear when I eventually got her home yesterday by asking me ‘when is that man was going to come back to clear up his mess’.  She also told me that she ‘was only staying here because no-one else wanted her’.  There is little I can do about either of these situations: workmen need to be here for another four weeks and her nearest and dearest are conspicuous by their absence even on Bank Holidays!

My judgment about avoiding Care Homes at the moment has been confirmed by two conversations I’ve had over the weekend.  On Saturday we were chatting to a mother of a carer who works at a local Care Home and she said her daughter had told her that none of her workmates would ever encourage a loved one to take up residence in such places.

Yesterday a kind lady, who was very supportive to Maureen, gave an insiders perspective on Ashgrove Care Home.  She told me that there had been an exodus of long serving staff who had been replaced by employees who were untrained and spoke little English.  This is the Care Home that lost Maureen on one occasion and was unaware that she had gone missing until the Police telephoned.  On another occasion, I went to visit Maureen and found her trapped in an unlit room in an unsupervised area of the Home.

There has been lots of pain from builders being on site for the last two months.  It is one of those occasions when there is no gain without pain. The addition of a Sun Room along with a Shower Room will provide all sorts of options for the future.  It can even become a place where family members can stay overnight to give Maureen the company that she so desperately craves.

I’ve just remembered I have forgotten to let you know how I managed to get Maureen back here.  After I trailed her in the car on the advice of the HTT she suddenly waved me down so I opened the car and she got in.  I drove towards Cleethorpes and as I was passing McDonald’s I mentioned I fancied a chocolate milk shake and she said she wanted an ice cream.  A Raspberry McFlurry did the trick with Maureen changing her reality and ‘we had a nice day’.  I mentioned Maureen’s transformation to the Manager and she was so pleased that they had been able to help that she popped out to the car to meet a very satisfied customer!

 

Dementia: Safely Back Home

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It has taken four hours to persuade Maureen to come back to our house after she was determined to ‘walk back to her own home’ this morning.   Lots of people we have never met before played an important part in keeping her safe as she walked around this part of Cleethorpes when it was very warm.  Single Point of Access also managed to shepherd support our way when resources were stretched to the limit.

I gleaned some important information and learned some very important lessons from today’s episode which I will share tomorrow.