Dementia: Walking In The Sunshine

Mixed Dementia,

Image result for walking in the sunshine picture

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,

Image result for Lost and Bewildered picture

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

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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!

Dementia: Compassionate Company

Mixed Dementia,

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Although yesterday was a little disappointing we both had the pleasure of enjoying some compassionate company.   Wayne our chauffeur, like all of the staff of Airport Travel, treated Maureen with dignity and respect.   From the time of our arrival at Madyhamaka to our departure lots of people went out of their way to make our short stay as comfortable as possible.  It was refreshing to see Maureen treated as a person rather than someone who has dementia.  What a lovely change from the approach of many who darken our door and under the guise of a person-centred-approach cannot see beyond her diagnosis.

 

Dementia: As Blind As A Bat?

General, ,

Image result for Blind As A Bat pictureYesterday’s  visit to Madyhamaka failed to get me the respite I was seeking.  Maureen didn’t like it in a strange place – particularly as she was thinking that we were going to visit her mother.  The whole experience has left us both worn out and put Maureen on red alert about my motivation for doing anything.

When I reflect on my aspirations yesterday they were a clear indication of myopia: a short-sighted approach to the real issues here. The issue isn’t  about seeking some form of a Respite Break it is concerned with getting more rest from my role as a Care Partner.  It is fortunate that I’m due to meet our Key Worker this morning.  Unfortunately, his agenda is preparation for the Best Interest Meeting; while mine is how to increase my opportunities for rest until we gather on the 6th of April.

As Maureen thought I ‘tricked her’ again yesterday I think it would be unwise to carry out our ‘cunning plan’ on Friday.  Care Homes and Maureen do not mix and to con her that she is just going out for a meal and then leave her at Homefield House would lead to accusations that I had gone completely ‘batty’!

Dementia: Seeking Respite At Madyhamaka

Mixed Dementia,

I will try and persuade Maureen to accompany me to the Buddhist Meditation Centre at Pocklington today.  Airport Travel is on hand to chauffeur us for the short break that we both desperately need.  The thought of being served wonderful food along with compassionate people in beautiful countryside lifts my spirits and eases the pain in my aching body.

Maureen was reluctant to go anywhere yesterday: she appeared to greet my suggestions for a day out with suspicion.  What she doesn’t understand is that time is running out for us to demonstrate that there are there are ways of me recharging my batteries without putting her in a Care Home.

My discussion with the staff at Homefield House went well yesterday and we have a plan to introduce Maureen on Friday that aims to minimise her distress.  It is very different to similar facilities I have seen in the area.  As our Key Worker implied it is akin to a place where Ladies Lunch with waitress service and sherry served with meals.  Despite its many positives, it is a Care Home and I anticipate that Maureen may see what it is and react accordingly.  I am also unclear whether the level of stimulation that Maureen needs will be available from fellow residents.   All we can do is stick to our ‘cunning plan’ and react accordingly.

If I am unable to persuade Maureen to take a break at Madyhamaka we are likely to face the one size fits all approach to dementia – Respite in a Care Home.  The Best Interest Meeting is likely to remind me ‘that I’m not a robot’, as our Care Coordinator pointed out the other day, and want to ensure specific arrangements are in place so that I continue to have the energy to look after Maureen in our own home.

Dementia: Procrastination and Patience

Mixed Dementia

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We have slept together in the marital bedroom for most of the last 8 hours.  It wasn’t a bad night as Maureen only woke a couple of times.  When she woke the second time, convinced she had lost Maeve from sleeping beside her, it took over half an hour before she accepted she had been dreaming.  It wasn’t surprising she had been thinking about her ‘missing’ granddaughter as there had been lots of chat about her during Sunday afternoon.  Her dream is a prime example of her inability to recall as was her distress just before we turned in when I was out of sight for a few minutes and she said she hadn’t seen me for hours.

Within a couple of hours of their departure, Maureen had no recollection of her visitors on Mother’s Day.  In fact, she asked me if her son had been as she couldn’t remember seeing him.  How sad that she had no recollection of the couple of hours she had spent with her son, his wife and their four children.  Her focus on Maeve had arisen because our visitors were on their way back home from her 18th Birthday Party.  It is also sad because Maeve used to be a regular visitor when her mother was alive and she hasn’t been here for some time.

Maureen is still at home because the Care Home I have in mind for a Resite Break was understandably unable to carry out an assessment yesterday.  I have an appointment to meet the manager at 11 am to discuss how we can encourage Maureen to take up temporary residence with the minimum of distress.  Procrastination is indeed the thief of time but patience has to be paramount if I am to get the break I so dearly need!