All posts by It's My Time Now

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. View all posts by It's My Time Now →

Dementia: Short-Term Memory Loss?

May 13, 2016GeneralIt's My Time Now

I managed to step inside Maureen’s world yesterday and grasp another aspect of her reality. Mo, a neighbour, had tried to help Maureen when she found her in the street looking for our house. Her attempts to encourage Maureen to understand that she is no longer safe to be out alone resulted in hostility. After she left Maureen explained to me that other people didn’t understand that her memory loss had been ‘short-term’. For the first time the penny dropped with me on Maureen’s explanation of the consequences of stroke: ‘that she lost her memory once’.

It was fortunate that we were in good humour from walking in the early morning sunshine on the Prom before Mo’s helped Maureen to find her way home. I used our happy demeanour from our early morning stroll to laugh off Mo’s attempt to put Maureen in her place about ‘being naughty and wandering off’. Laughter has been the furthest thing from my mind at 4.30 am this morning as I have tried to distract Maureen and not absorb her hostility towards me.

As we enjoyed our day yesterday with several walks I grasped that Maureen was often unclear how I fitted into her life. She frequently told me about ‘her Paul’ and must have asked me the same question about my son half a dozen times. Around 8.30 pm she became agitated that she couldn’t remember or see any wedding photographs around the house. I didn’t remind her that she had torn one of them up and moved others out of view.

This morning Maureen’s confusion is rampant: utterly bewildered about how her daughter let her marry a guy she didn’t know. I have tried everything I know to put her mind at rest and eventually withdrawn myself from the firing line. ‘Mrs Dementia’ is no fun to be with this morning she clearly isn’t happy with arranged marriages and is threatening divorce.

I’m hoping that further sleep will lead to a change in Maureen’s presentation with ‘Mrs Dementia’ taking time off. Chloe today’s carer will be here at 10am and I will be off shortly after her arrival for an appointment with my physio to discuss the way forward with the tear in my rotator cuff. When I return I must stick to the mantra of not absorbing and using distraction to minimise distress.

It would be really nice if ‘Mrs Dementia’ took a short-term break over the weekend if not I will need to be on the phone to the Care Agency for additional support. I realise I am very fortunate to be supported by a team of professional staff who recognise the need for flexibility in our Care Plan: they will fully understand that yesterday I was able to cancel a carer sit but on Saturday and Sunday I might need additional support. As I have said before the mantra in North East Lincolnshire is: ‘look after your carers’.

Dementia: Admiral Nursing To The Rescue Again!

May 12, 2016GeneralBetter PractiseIt's My Time Now

Yet another disturbed night has led me to realise it is time to back off on several fronts. I had a good chat with Sandra one of the Support Workers in the Admiral Nurses office yesterday and began to see that ‘jaw jaw is creating war war’: challenging Maureen about sleeping on the sofa only leads to distress for both of us It is time to accept that trying to persuade Maureen of the errors of her ways is naive: I have to accept her reality. Bob DeMarco from the Alzheimer’s Reading Room talks the need to take a step to the left and enter the world of the person who has dementia.

I followed Sandra’s last night and didn’t object to Maureen sleeping on the sofa. I heard her moving around at 1pm and found her worried about intruders. She looked a fearsome sight armed with a large plastic spoon and draped in a blanked: no wonder she saw the scoundrels off! I accepted my reprimand for going to bed and leaving her to keep us safe. After a while Maureen decided to go to bed and I eventually chanced my arm and lay alongside her for a pleasant half hour. Unfortunately my thinking-hat was switched on and I hope blogging might help me to clear my mind.

I’m going to cancel this morning’s carer sit and have a chat with the Admiral Nursing staff about reviewing future arrangements on Tuesday and Thursday mornings. I think it is possible that the trigger for Maureen’s current presentation is the additional carer sits fuelling her accusations that I’m arranging baby-sitters so can I go out and have a good time.

There is little doubt that Maureen rose the occasion during our day trip to Coventry last week. Another similar opportunity beckons this weekend when we could venture up North rather than receiving a visit from her younger son and his family. I think a change of scenery coupled with backing off by taking a ‘step to the left’ might help on the next stage of this journey.

Dementia: A Quick Step Out Of Trouble

May 11, 2016GeneralBeing FlexibleIt's My Time Now

I had to step into my ‘Tea Boy’ mode this morning to get out of a hole I was digging for myself. Maureen changed the rules of ‘Musical Beds’ last night by refusing to move from the sofa. This meant that I have had little sleep with one ear tuned to the Baby Monitor all night, listening to her every move, and frequently popping downstairs to check that she is safe. My ‘hole-digging’ started around 4 am when I tried to open discussions about it being sensible to sleep in a bed.

I often forget that dementia means logic, rational thought, and empathy are early casualties of the condition. My attempts to assert that it is normal to sleep in bed fell on fallow ground with threats to leave if I didn’t want Maureen to live here anymore. Early morning tea has turned the tide on what became a fruitless discussion with accusations that I was telling Maureen what to do: even treating her like a child. I simply have to find another way of prising her off the sofa at night and encouraging her to sleep in bed: suggestions as ‘comments’ please – no closing date or prize for a solution only my gratitude.

The good news from yesterday is that Charlotte our new carer made a positive start to becoming part of the team. She has a lovely nature and Maureen seemed to like our new ‘Shopper Lady’. I realise it is early days and one false step from myself or Charlotte can easily lead to all sorts of problems in the future.

We didn’t make it to see our friends from the Bowls Club last night but I have flagged up the possibility of catching up on some familiar faces from Social Dancing this morning. I have already been demonstrating that I still have a lock-step in my quick step repertoire so with luck we’ll be ‘tripping the light fantastic’ at Clee Church Hall before noon.

Dementia: Playing ‘Musical Beds’ Again

May 10, 2016GeneralIt's My Time Now

Maureen spent most of the yesterday either in bed or sleeping on the sofa. When it was time to retire around 10pm we started off in the marital bed together: eviction to the spare room took place at 2 pm and we were back together at 5 am. This has prompted me to think of two tunes that could accompany our night time ritual of ‘musical beds’.

Maureen’s would perhaps be:

I would go for:

This morning we have a new carer to induct into the Collins household. Charlotte will be here at ten for her first visit as Mary has moved onto night ‘sits’. As Charlotte may become our regular ‘Girl Tuesday’ I need to manage her introduction carefully. I think the safest approach is for her to be our ‘Shopper Lady’ by sending her out to top us up on a few basics and then become a ‘Cleaner Lady’.

I will also ask Charlotte to buy a new microwave as our experiment without one is over. Trying to reheat food with a conventional oven is not working and I paid the price for Maureen’s cool lunch yesterday: the ‘cold shoulder’ for much of the afternoon: my attempt to atone with fish and chips from the local failed and only served to remind us of why we both prefer home cooking.

The first few calls of any new carer have to be carefully handled as Maureen can take an instant dislike to any new kid on the block: if she wears perfume or is too pushy she is doomed. However, if Charlotte’s initial foray is to put more food in the larder and help me to make sure meals are hot rather then she has a sporting chance to become a hit.

New faces are the price I pay for resisting Direct Payment as I am reluctant to become an employer. Using an Agency has its benefits and generally ours is as good as it gets, with a team of workers who try their best to be supportive. I will stay close by this morning and try to help Charlotte to become the final piece in our jigsaw of care.

If things pan out in a positive manner today I might encourage a social call at our Short Mat Bowls Club this evening. Maureen was always popular with the Bowlers and a move to rekindle those friendships might be timely. Some form of activity in the evening has to help us to move on from dozing in front of the ‘goggle-box’: there are only so many repeats anyone can stomach.

Now I wonder if Doris Day or the Police will be Top of the Pops tonight.

It’s the hardest thing in the world

May 9, 2016UncategorizedIt's My Time Now

Another moving post from George.

george rook

It comes out of nowhere.

Bang.

A jolt of lightning strikes your brain.

You’re suddenly taken where you don’t want to go.

A place you’ve been avoiding, blanking, hiding, camouflaging.

It’s emotional chaos for that little flash of the future.

So, that’s what is going to happen after all.

Dementia is a slow burn. Not for everyone I know, but mostly it takes years, even decades, to develop, or rather for

Your brain to stop working.

You live on, after diagnosis, mostly forgetting about it. You get on with your life.

Yes, you find it hard to get words sometimes, or to remember where and why you’re going somewhere.

You can’t always decipher what you hear first time…irritating those you live with.

You might start to shuffle a little, become unsteady on your feet, find steps a little tricky.

But it becomes the new norm.

Then out of nowhere…

“It’d…

View original post 170 more words

Dementia: Looking Back: Looking Ahead (Week 17)

May 9, 2016UncategorizedIt's My Time Now

Regular readers of this Blog will note a different picture to start the week. This is because this morning I want to focus on moving ahead by looking at the opportunities that our experiences from last week present:

Travel: Maureen really enjoyed our day trip to Coventry and that provides inspiration to travel a little more.

Walking: We have had several enjoyable strolls this week in beautiful sunshine. Maureen has sought to teach me the ‘Green Cross Code’ during our walks which raises interesting questions about her capacity to be safe when out alone.

Socialising: On Saturday and Sunday Maureen came into her own showing a great deal of compassion to strangers in need. Her attempts to communicate with a woman who had suffered brain damage and offer comfort to a lonely elderly widow was heartening. We also bumped into some friends from our Bowling Club and Maureen enjoyed some friendly banter. It would be interesting if we could pop into to see some of our friends from bowling or dancing in the coming week.

Visitors: With the warmer weather upon us the beach beckons when we have visitors around particularly for families with young children. I’m sure Maureen will find it easier to cope with larger groups of people in the great outdoors.

‘Strangers In The Night’: After another disturbed night I am still thinking of the best way for us both to get the rest we need. When we sleep together it is easier to ease Maureen’s fears about strange men in the room but when I am banished to the spare room that becomes rather difficult. I turned from ‘Zero’ to ‘Hero’ in the space of 4 hours: reprimanded when going to bed for being tired with ‘how would I cope if I had to work?’: needed at 2am to keep her safe from ‘visitors’. I’m needed again as I type as Maureen is in floods of tears about how she misses her family in Nottingham and what a good dad she had. I’m off to be ‘Tea Boy’ before I finish this post.

Tea provided Maureen with temporary relief from upset but now she is worrying about her poor memory. She is concerned that she isn’t really sure who I am half the time – I hope my reassurance and a further cup of tea might help her to rest a little longer. I’m glad Chloe, today’s carer, will be here in a couple of hours as another pair of hands will make things a little easier and one of her ‘Pamper Days’ might just help.

Meditation: I need integrate meditation into my daily routine and hold off on attending Wednesday evening classes as two carer sits in one day fuel the ‘desertion syndrome’. With luck I will be with on YouTube as soon as the coast is clear.

Too busy for Prescribed Disengagement here!

Dementia: Six Ways To Create A Positive Realtionship

May 8, 2016UncategorizedIt's My Time Now

It's about relationships Teepa Snow

I have copied this post from the blog of Amazing Susan to remind me to concentrate on building a positive relationship with Maureen rather than focus on getting things done:

‘1) listen

Open your eyes, ears, hands and heart. Be observant. Pay attention to nuances in behaviour. Listen with your whole being to what’s being said by your care partner who lives with dementia. You may be amazed that people who seem to have lost their ability to communicate can in fact make their needs known and connect at profound levels. Listen to be enriched. Listen to be more effective in how you engage.

2) agree

As I and a host of others have said many many times before and as all smart care partners eventually come to realize, it pays to agree:

Do not argue
Do not contradict
Do not dismiss
Do not question (rather, ask yourself questions)
Do not infantilize or patronize
Do not attempt to convince or use logic

Say “Yes, and…” to your care partner who lives with dementia. Go with their flow. When you do, your life and theirs will change for the better.

3) create/hold space

Make space for your care partner who lives with dementia to be who he or she is, whatever that means on the day or in the moment. Don’t try to make her or him into something she or he isn’t, and that includes wishing they were who they used to be. Remember that the core of who they are is is sill there, even though her or his self may manifest in different ways. Make space for the present and celebrate who they are in the moment. (More about that here.)

4) take care of yourself

Caring for yourself is vital. That means doing whatever it takes to find support, get respite, and have time away from your care partnering role. “Put the oxygen on yourself first,” everyone says – and for good reason! Your health is critical to your own and your care partner’s well being. If you don’t take care of yourself, there’s no way you can care for somebody else in the long term. Self care is not optional, it’s essential to having a good care partner relationship and less stressful experience.

5) walk away before you explode

“I didn’t mean what I said! I can’t believe I was so cruel…” These are the words of care partners who are falling apart at the seams. They are exhausted, depleted, at the end of their ropes, and they have said and done things they would never normally say or do because they have not paid attention to #4. If you find yourself at this level of crisis, walk away before you say or do something that will make the situation even worse. Give yourself time and space to breathe and recoup — a minute, an hour, a day, a week, a month, whatever it takes to get yourself back together.

6) walk back when you are strong enough

Because of the stigma of Alzheimer’s disease and other forms of dementia, people who live with dementia often become isolated when they most need our love and support. When you’re strong enough, and you are ready to take their hand again and walk by their side, please do so. They need you. If you can’t do it personally, help and support those who are able to do so in your place.

These tips and thoughts are based on my personal experience, as well as my knowledge and work as a certified PAC trainer‘.

Footnote: I would add one more – always try to retain a sense of humour. At 10.30 pm last night I couldn’t find Maureen and my heart was in my mouth: I thought she had gone on walkabouts. As I returned to the house to get my car keys she appeared in hysterics from hiding behind a door. How lovely that she has retained a sense of humour: I’ll get her back today!

Late News: Maureen has just found her missing engagement ring on the floor of the bedroom!

Dementia: This Is No Time For Attachment

May 7, 2016GeneralBetter PractiseIt's My Time Now

If I don’t keep my ‘eye on the ball’ this morning I’m going to cause Maureen unnecessary upset. As I tried to encourage her to go to bed last night I noticed her engagement ring was no longer on her finger: she responded with ‘perhaps I’ve lost it’. It’s important for me to take her comment at face value this morning: mention the missing ring and I am likely to cause pointless distress.

It is possible that Maureen’s ring has slipped off her finger as it is far too big following stroke. However, there is also a chance that she has put it somewhere for safe keeping. What I have to resist is spending hours hunting around the house and garden: something we both did when I lost my wedding ring a few years ago. After several weeks we declared my ring gone forever and I replaced it with a look alike that cost a few pounds rather than go for platinum again.

Daniel Craig came to my rescue last night and helped me not to absorb Maureen’s distress when she arose from the sofa shortly after 10pm. She had no idea where she was and desperately wanted her mum. My struggle to settle her took some time; particularly as she had no idea who I was or what we were doing in the same house together. Watching ‘Sky Fall’ provided the distraction I needed so I didn’t absorb Maureen’s upset and hostility: yet again I still didn’t see if James got the baddies!

Maureen woke at dawn this morning looking for ‘the others’ and wondering if she was going to be ‘left alone for the day’. It looks like being her ‘Tea Boy’ has helped her to feel safe rather than be afraid of being alone with me in the house. I’ve tried to ground her with thoughts of searching for more LP’s at the Car Boot Sale just down the road. I hope I can persuade Maureen to accompany me this morning: who know we might even find one by Johnny Ray to remind her of that live show when she was a teenage ‘Groupie’ waiting eagerly at the stage door for his autograph.

Now I wonder if I can practise what I preach with some early morning meditation on the dangers of attachment:

Dementia: Effective Home Treatment

May 6, 2016GeneralIt's My Time Now

I met with Gilly the manager of the Home Treatment team shortly after noon yesterday. At my request we met for half an hour and we explored the challenges of my caring role. She helped me to put what had been happening over the last few weeks into context and I left the meeting with a resolve to face what lies ahead with confidence.

We are very fortunate to have such an informed Team of workers on our doorstep. It is very reassuring that when the going gets tough help is at hand and a ‘rescue remedy’ will be on offer. What I particularly like about the approach of the Home Treatment Team is their holistic approach to a crisis. In our case the problem was my exhaustion: it was fuelling the changes in Maureen’s presentation. This ‘trigger-happy team’ soon sussed out what was going on by looking at causes of our crisis: rather focusing on Maureen’s presentation.

Gilly was very thoughtful in helping me to reflect on what had sparked the crisis. Her message to me was quite clear: use the additional ‘sits’ that are on offer for ‘me time’; don’t fall into the trap of thinking you can be an effective Care Partner without adequate support. Although our current crisis is over Gilly made it clear that the door is always open if the going gets tough again.

I hope today’s post will be an acceptable way of registering my comments through the PALS system on the effectiveness of the Home Treatment Team . We are very fortunate to have such a skilled team of professional staff in North East Lincolnshire: sincere thanks to you all.

Dr Bredesen presents on Reversal of Cognitive decline

May 5, 2016UncategorizedIt's My Time Now

This 45 minute presentation should be watched by all those people who are trying to deal with dementia. It is a presentation that offers hope to all those who are trying to live with and beyond diagnosis.