Dementia: A Quick Step Out Of Trouble

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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

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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

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Another moving post from George.

georgerook51's avatargeorge rook

New York City, New York State, USA --- Two bolts of lightning hit the antenna on top of One World Trade Center in Lower Manhattan as an electrical storm moves over New York, May 23, 2014. --- Image by © Gary Hershorn/Corbis

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…

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Dementia: Looking Back: Looking Ahead (Week 17)

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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

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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:

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

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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

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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

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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.

Kate Swaffer (she/her) Kaurna Country's avatar

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Dementia: Tiredness Takes Its Toll

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We were both exhausted when we returned home last night after our day trip to Coventry.  Not at our best our tiredness almost spoiled what had been a very enjoyable day. 

I was amazed how Maureen managed to keep going for the whole of our away day.  For over 12 hours she stayed in Hostess Mode keeping ‘Mrs Dementia’ at bay until she stepped through the front door on our return home.  Then almost as soon as we turned the key that ‘wicked woman’ returned with a vengeance.  After taking refuge in the downstairs toilet for half an hour she reappeared as ‘you know who’ and let loose with all guns blazing.  

At first I struggled to cope with her presentation until I realised she was only expressing a familiar reality.  Once my tiredness, along with frustration, ebbed  I got to grips with her reality of being brought to a strange place against her will. Why should she be happy when she had been taken away from her family and friends?  After all she has no happy memories here only vague recollections of tragic events in her life.

We always try to accentuate the positives and there were many from yesterday with Maureen really enjoying spending quality time with her eldest son.  I’m not sure my mum enjoyed such a positive time with her’s as my visit must have seemed rushed as we tried to beat heavy traffic on our homeward journey.  She is used to seeing me alone and having my wife and daughter in tow may have been confusing.  We responded to her request to ‘take her out’ but it may have been rather late in the day as she fell asleep on the way back to her Care Home.

I need to create some quality time with my mum and daughter as soon as possible.  My change of plan made that impossible yesterday. One thing  for sure is my ‘flexible friend’, Sue the Social Worker, will soon sort out my next day trip so I can compensate for what my mum and daughter missed out on yesterday.  Sue will also applaud that I manged to persuade Maureen to make a day trip to Coventry and spend quality time with her son.

Footnote: ‘Maureen’ is back in residence this morning singing beautifully in bed as she samples her first cup of tea of the day.  I’ve just realised she is singing a track from one of our latest vinyl bargains:

Maureen has just thanked me for doing all the driving yesterday; commenting ‘it was a lovely day’

Dementia: Holding My Nerve

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The next hour or so is going to be very tricky but I simply have to attempt to hold my nerve after another difficult night.  Maureen has been up several times since we went to bed which is rather surprising after a busy day without any siestas.  She has been frightened during the night by her fears that there are animals in the house.  It has taken a lot of reassurance to get her back to sleep.

My coach leaves for Coventry just after 7 am and it is tempting to change my plans.  It wouldn’t be the first time I have postponed or cancelled visits to see my family but this time I need to keep to stay strong. Maureen will be well cared for in my absence and her son will be with her for a significant part of the day.  If I back off now my plans to develop a life of my own alongside being a care partner will be in tatters and the support I have received from professional staff will have been wasted.

As I finish this post I just wonder if it is worth trying to tempt Maureen to come with me and travel to Coventry by car.  I just wonder if I’m losing my nerve already or if this is a viable option?

Great news: what a brave wife I have we’re off together shortly!