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: One Hour To Go

Mixed Dementia,

Image result for Missing My Family Picture

Our chauffeur will be here in an hour but I’m not sure we will make it to see my mum on her 96th birthday. Maureen is very upset and keeps asking me why her family never come to see her?  She has been saying that ‘no one cares about me and no one believes me’.  My words of comfort are falling on deaf ears and she is suggesting that I should go to see my mum by myself.

Maureen understands that my mum and brother are no longer well enough to visit us.  If we make it to Coventry this morning I think it is likely that she will be reluctant to visit others as she says ‘why should I go to see them when they don’t come to see me!’ However, as I know she will enjoy the company of her family I will do my best to persuade her that as we are down that way we may as well call in and see some of those who are finding it difficult to get to Cleethorpes at the moment.

 

10 Lessons from People l/w Dementia

Uncategorized

Henri’s post that follows confirms the point I made yesterday. Those who live with dementia day after day understand the condition!

Ekta's avatarFrom Outside The Mall

I love my job. It fulfills me because I can give and receive in equal measure. In general, people assume that the lives of those living with dementia are somehow less than those who don’t. There are innumerable myths about what dementia is and how it diminishes a person.

I vehemently differ from this opinion. I wanted to list down all the things I have learned, relearned and had reinforced as a direct result of working and loving people living with dementia.

1. Slow down: I do everything fast. Eat. Speak. Walk. Read. Organize. BUT…if I have to effective in my work, I have to slow down to accommodate the needs of where people are at. Not just people l/w dementia, but also their caregivers. It stands me in good stead when I am stuck in a TTC disaster or trying to juggle five tasks at once.

Blog-sunset The sunset from our office…

View original post 925 more words

Dementia: My Two Top Women

Mixed Dementia,

I know I’m a little late for International Women’s Day but that is deliberate because tomorrow is my mum’s 96th birthday.  This is my musical message to my mum:

Maureen will be accompanying me tomorrow on a trip of over a 100 miles to see the Birthday Girl.  This is my musical message to my dear wife and reflects her approach to living with dementia:

 

Dementia: A Natural Break Beckons

Mixed Dementia, ,

Image result for A Natural Breakfrom Dementia Picture

This morning I have an appointment with my Counsellor – the very man who suggested I should consider blogging.  He helped me to think my way out of depression and see that medication was not the solution for recurring low mood.  Once Maureen was diagnosed with dementia he suggested my mission was to minimise distress.

Maureen didn’t want to go on a little holiday yesterday, rejecting out of hand any ideas about a short break.  No matter how we tried she saw no point in going anywhere as she ‘liked being in her own home’.  I kept in touch with the manager of  Waltham House throughout the day and was reassured by her empathy for my predicament.

The consistent advice from professional staff yesterday was to work within my usual remit of minimising distress.  It soon became obvious that Maureen could see no valid reason for leaving her home and going anywhere else.  No matter how we dressed it up: ‘the lady was not for turning’.  Today brings a new beginning, unfortunately, it is cold and raining heavily so my chances of getting Maureen out of the front door are slim, to say the least!

There is another possibility for a short break for both of us.  My mother is 96 on Thursday and Maureen is keen to join me on a trip to see the Birthday Girl.   Family members are already offering to put us up for a  night or two so we don’t have to travel over 200 miles in one day.  Such a natural break is a phone call away and our chauffeur will be here tomorrow morning.

Our professional support team has always alerted me to the dangers of Burnout: there is a constant message to look after yourself.  Respite care for Maureen is usually seen as the solution when I begin to feel jaded.  I understand that a rolling programme of regular breaks is a sensible arrangement.  I am optimistic that Waltham House is only an assessment away from filling such a gap in our Care Plan.  However, from past experience, I can safely predict that Maureen will be distressed by such arrangements.  To paraphrase her words ‘I’m ready to give up whenever you have tricked me into going in a Care Home’.

It’s fortunate I’m seeing my Counsellor this morning as I’m sure I will emerge from our session with a pragmatic way forward.  It is so helpful that his initial training was as a Mental Health Nurse working in a Dementia Unit.

I hate to think what readers of this Blog ‘who live dementia’ would have thought if I had deliberately ‘tricked Maureen’ into not seeing the Birthday Girl tomorrow.  It could even be that we go today as Maureen never knows what day it is and could well think we will be heading south this morning!

Dementia: Twelve Hours To Go

Mixed Dementia, Uncategorized

Image result for 12 Hours to Go Picture

I’m hoping for the green light at 2 pm: news that following assessment, Waltham House (‘A Caring Home’) feel they can meet Maureen’s needs.  The prospect of a week off duty is keeping me going at a time when it would not be sensible to seek further sleep.

Lots of people stepped up to the plate yesterday to support us through a rather bizarre day.  Maureen’s Time Travelling was exceptional with one predominant feature which is now a cause for considerable concern.  The Clinical Psychologist from the Stroke Team warned me that once she began to confuse me with her ex-husband to be very wary.  It is patently obvious from how she is frequently addressing me that time has now arrived: hell has no fury like a woman scorned!

There was one really bizarre episode yesterday when whilst searching for a missing child  Maureen reverted to sign language.  She has often told me how as a teenager she had lunch with relatives who were unable to speak and developed her own unique way of communicating.  Once again I had to call on the support of neighbours who encouraged a really frightened woman to use her voice again.

Hostilities and abuse have resumed shortly after midnight so I have stayed out of the firing line.   I’m sorting out one or two outstanding tasks and making sure Maureen has an overnight bag to take with her later on this morning.

I’m still not sure how we are going to move Maureen from somewhere she doesn’t belong to a place where she is unlikely to want to be.  It’s reassuring that Girl Tuesday will be on hand to ease Maureen’s transition to Waltham House and give me the respite I so dearly need!

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Seeing Red

General

Image result for A Double Red Card PicturePosted at 4.40 am:

I decided to give myself a Red Card this morning and take a very early bath.  Relaxing in the lavender oil aroma helped to ease my aching limbs and troubled mind.  Maureen chose to converse with me through the bathroom door about ‘her car being stolen’.  I couldn’t quite catch all of her concerns but she was clearly reluctant to enter the bathroom.

Image result for A Double Red Card Picture

Once out of the bath Maureen gave me another Red Card launching into vitriol about being kept a prisoner here.  The usual diatribe followed: I’m not her husband, I’m mad and once the police find out I will be in real trouble.  It didn’t take me long to realise the only solution was to give her space and hope that sleep had a positive impact on her presentation.  She is currently waiting for ‘someone who loves her to pick her up and take her away from this dreadful place’.

At 4.30 Maureen is standing on the window sill shouting for help out of a quarter light.  I have phoned Single Point of Access who are hoping to get Night Rovers to call in and provide support.

Dementia: Lost, Bewildered and Frightened

Mixed Dementia,

Image result for Lost Bewildered and Frightened Picture

Maureen seemed totally lost late yesterday evening and I encouraged her to sleep it off. She reappeared from her nap after a short while and was completely lost in her surroundings despite my efforts to ground her.  When it was time to bed down for the night it took a long time to settle her on her choice of the sofa.   She has been awake several times during the night complaining that the people here are trying to frighten her and she can’t wait to get out of this place.  At 5 am she was struggling with a dry mouth and wondering if someone else was needed to help her with medication.

The coaching on medication went relatively well yesterday but it threw up all sorts of anxieties for Maureen about getting it right.  One thing it did address was just for once I was sure her tablets were taken.  There has often been evidence that Maureen has not taken her medication and yesterday I found more tablets in places where they should not have been!

There are a couple of things I’m going to try today in an effort to change Maureen’s presentation.  Firstly, I’m going to ask one of her sons to issue a rallying call for immediate family to schedule regular contact and visits.  Maureen’s continual question about where are my family needs to be addressed.  Secondly, I’m going to try to change her environment by encouraging activities that remove her from the sofa unless she is clearly in need of further rest.  Rachael Wonderlin has posted a video clip on her blog that will help me focus on this mission:

Dementia: Maureen Has Passed Her Physical!

Mixed Dementia

The lab report on Maureen’s urine sample has shown that she does not have a UTI.  Her blood tests are all within normal limits and the swab on her mouth has shown no sign of fungal infection.  Her blood pressure, although slightly more elevated than normal, is not giving the G P any cause for concern.  He has suggested that unless she has any concerns monthly appointments for a general check up will be adequate in future.

Yesterday Maureen told Girl Friday that she is lonely:  she says she understands family members are busy with their own lives but she misses their company.  She generally shows a reluctance to travel to see them as she feels that they should be coming to see her.  I have no intention of persuading her to endure long journeys in her current condition; even though I know she is really missing one particular granddaughter at the moment. You would only have to see her waving with tears in her eyes as she watches Maeve on YouTube to understand what I mean:

Early this morning Maureen has woken up worrying about her medication as she says she’wants to get better’. I’m hoping that this is an opportunity for me to help her regain a semblance of confidence and independence through taking responsibility for her medication. I will keep you posted on how this goes!

Dementia: Reclaiming Our Lives

General, ,

Hey Kate Swaffer, my cyber friend, we still feel young so I hope you don’t mind me using the cover of one of your publications to introduce this post:

Image result for Reclaiming Our Lives from dementia Picture

It was good to have a long chat with our Key Worker yesterday.  He was concerned that arrangements needed to be put in place to ensure my wellbeing.  As he rightly pointed out if I burn-out then matters would be taken out of my hands and Maureen would be taken into care whether I liked it or not.

As anyone who reads this blog would expect it would be unlikely that I would walk down that well-trodden path of seeking respite by placing Maureen in a Care Home.  This route has been far from safe in the past and does not address our aspirations of togetherness.  So I am exploring what all couples do: having a break together.  My initial inquiries have gone well.  One of my sisters has offered open house: although it is a bungalow in her case.  The Madhyamaka Buddhist Centre are also keen to accommodate us in their tranquil surroundings:

Image result for madhyamaka kadampa centre yorkshire

My previous plans to have a regular break by myself at the Centre do not make sense: we are a married couple who enjoy being together.  I’m sure this is only the tip of the iceberg of getting our lives back as we come up with other ideas for mini-holidays and family members invite us to travel around the country to share their company.

‘Ginger’, as Maureen calls him, also encouraged me to put in place structured arrangements for personal support.  I have, consequently, arranged to meet my Admiral Nurse every two weeks.  This Blog will be used as a basis for discussion on how things have gone in the preceding fortnight along with the reflections of carers.  In addition, I will use my Support Worker from the Alzheimer’s Society to chat over my plans ‘as and when’ as they say.

Plans are already in place to make our home safer and more dementia friendly.  Our decorator is imminent to use colour to make it easier for Maureen to find her way around. Our builder is holding off on plans to make our patio safer until the danger of frost has passed.

Spring is in the air and there is plenty to do in our garden.  It would be easy to spend the summer months pottering in the garden and enjoying the tranquility of Cleethorpes.  This would not address aspirations to get our lives back.  However, if we make sensible arrangements to travel further afield who knows where we might get to in the coming months: then we will both feel we are living again!