Dementia: Stop Worrying, Start Living

Today’s Buddhist teaching is once again from Dekyong :

As well as trying to deal with my mind I’m also taking steps to resolve issues with my body.  My physiotherapist has now prescribed a series of exercises to address restricted movement in my shoulders and legs.

There is little doubt that bilateral hip replacement has reduced the chronic pain that I used to experience.  What I hadn’t  understood is that is new hip joints are not the end of the story.  If I want to make the best of the Surgeon’s work I need to exercise to maintain muscle mass and flexibility.

My shoulder problems are explained by physiotherapists as ‘white hair rotator tear’.  Unfortunately, I have the credentials on both fronts and an operation for someone of my age is not guaranteed to work.

Buddhist assert they are not their body: little consolation when pain is keeping you awake at night.  When I was last at Madhyamaka my good friend Kelsang Dorde

Image result for Kelsang Dorde picturetaught me a simple breathing meditation that helps me get back to sleep when I’m woken in the early hours – yet another ‘no-brainer’  from the man!

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Dementia: Whatever Happened To Positive Risk Taking?

 

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The Local Authority has made an application to the Court of Protection to allow me to deprive Maureen of her liberty.  I guess if I don’t complete the requisite paperwork they will claim she is no longer safe in my hands and lock her away in a Care Home.

I am as keen as anyone else that Maureen is safe.  However, I wonder what has happened to the idea of positive risk-taking?

Maureen’s presentation fluctuates and on good days she is as sharp as a tack.  If she begins to see me as her goaler that is yet another nail in the coffin of our relationship!

I also do not accept that the local community is a dangerous place: quite the opposite.  Our neighbourhood is full of people who look out for Maureen and many kind souls have brought her back home when she has asked for help.

I’m sure that there could be another way.  New technology offers all sorts of options to keep Maureen safe in the community.  IMHO having the right to deprive Maureen of her liberty is a retrograde step on the path to Kate Swaffer’s Prescribed Disengagement!

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Dementia: Taking My Time Off

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One of my mistakes during 2017 was not taking my time off.  There were many occasions when I chose to stay around during Carer Sits: especially when our Sun Room was being built.  I made a similar mistake on Christmas Day and Boxing Day when I thought it would be better to have the day to ourselves: what a bloomer!

Yesterday carers were here from 10am until 4pm and I took full advantage of their presence.  Maureen has no concept of time and didn’t appear to notice any difference.

When I met our Key Worker yesterday I asked him to build one six-hour sit into our Support Package. This arrangement will be on Mondays from now on – subject to the availability of staff.  A six-hour break will mean that I can have a relaxing time, rather than rushing around to make sure you I’m back to relieve carers.  I have also asked him to put an additional Carer Sit in place on Wednesday evening so I can attend local Buddhist Meditation Classes.

A week on Monday Maureen will go into Alderlea Care Home for two weeks.  Now I have ‘sussed’ the place out I will not visit during that time and take a complete break from my caring role.  I have already arranged a Buddhist Retreat for the first week and will catch up with family and friends later on.

It has taken me quite some time to accept that Carer Sits are my time. and from now on I’m out the door almost as soon as they arrive.  This is my plan on Sunday and I will not be here to see visiting family members until our carer goes at the end of her shift.

I have edited my About page to reflect my mission to share positives on this Blog from now on.  Every day, Maureen amazes me with her intellect and how she attempts to deal with the consequences of severe dementia.  One of our mantras has always been to accentuate the positives.  Why change habits of a lifetime just because dementia is in our lives?

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Dementia: Time To Tell The Truth

What a great initiative starting tomorrow:

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Dementia: Music Not Medication!

I had to resort to an early morning session of YouTube this morning when Maureen was beside herself with fear.  I chose the music carefully and only put on our beloved Songbird Granddaughter once Maureen had downed copious amounts of tea.  From what I have just heard the immediate fears of the morning are over: Maureen has found her way to the bathroom and can remember what to do again!

I’m going to be opportunistic this morning as I try to help Maureen rebuild her self-belief.  I have asked her to accompany me to my physiotherapy appointment. This will give me an opportunity to coax her into her nurturing mode and nag me to do the prescribed exercises to regain flexibility in my legs and shoulders.

Maureen and I rarely see medication as the solution to our aging bodies and tired minds.  Music continues to play an important part in our lives:  if I could coax her into calling in to see our dancing friends at the Church Hall on our way home I would really be cooking on gas this morning!

Updaate at 7.20am:  Taking Maureen to the Church  Hall is far too risky.  I often believe that others are overstimulating her and was about to stray down the same path.  Why would anyone in their right mind take her into two situations that have the capacity to distress her in one morning?

 

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Dementia: Sharing The Good Times

When I look back at my Blog over 2017 I have often shared those occasions when I have been struggling: when Mrs. Dementia has been in full flow.

That is only one side of the story and one of my Resolutions for 2018, is, to share the good times:

Maureen isn’t just my ‘Dancing Queen’; she is also my ‘Singer Lady’:

Happy New Year

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Dementia: Transforming Our Lives

 

HOW TO TRANSFORM YOUR LIFE – A BLISSFUL JOURNEY

How to Transform Your Life – A Blissful Journey

BY VENERABLE GESHE KELSANG GYATSO

In the introduction to How to Transform Your Life, the author, Venerable Geshe Kelsang Gyatso, says:

‘Through practising the instructions presented in this book we can transform our life from a state of misery into one of pure and everlasting happiness.’

I have downloaded the free EBook and signed up for the retreat at the Buddhist Centre in Pocklington in two weeks time.

Yesterday I mentioned how increased carer support can transform our lives.  Today  I’m hoping to transform my approach to the unknown.  Six family members will be arriving shortly: rather than focus on the prospect of overstimulation for Maureen I’m going to welcome our visitors with open arms.  I’m hoping to catch many of today’s ‘Magic Moments’ on camera.  Maureen is often fixated on: ‘nobody likes me’ and photographic reminders of the love of her family might just transform her thinking on that front!

I hope between us we transform the approach to dementia in 2018.  Happy New Year.

 

 

 

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Dementia: ‘You Need More Help Than That!’

 

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Sometimes it takes a complete stranger to confront you with the shortcomings of your situation.  When I told a nurse at Grimsby Hospital yesterday morning about the level of carer support that we receive she said: ‘you need more than that.’

Maureen had been taken to the hospital early yesterday morning because of pain in her abdomen.  At first, she was cooperative as she remembered her discomfort. Once the pain receded she couldn’t understand why she was being examined.  She concluded that it was my well-being that was under the spotlight and began to challenge staff as they attempted to diagnose the source of her pain.  Things became really difficult when she was told that she was free to go home.

It took myself and two nurses almost half an hour to persuade Maureen to leave the hospital and get into our car,  During that time she was physically aggressive and verbally hostile to anyone who tried to help her.

Next week provides an opportunity to explore how additional carer support goes down with Maureen.  Carers will be here for 6 hours on Tuesday and Thursday as some unused hours from Christmas and Boxing Day are reallocated.

On the 15th of January Maureen will be going into Alderlea Care Home for two weeks.  We have decided that a two-week Resite Break gives her a better chance to settle in new surroundings and me an opportunity to recover from four weeks of being on very long shifts.

Being a Care Partner is the most difficult job I have ever had in my life and I’ve had some tough ones.  It is important that the level of carer support reflects the demands of the role and is increased as things become more challenging.

The nurse who had saw Maureen in action yesterday is right.  Our current Support Package is inadequate.  It has not kept pace with changes in Maureen’s diagnosis: one of my resolutions for 2018 is to put that right!

 

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Dementia: The Water Is Wide

The above song fills me with optimism.  I heard it for the first time during the Concert For World Peace during my last night at Madhyamaka.  It brought tears to my eyes as it reminded me of one of Maureen’s favourites:

The exciting thing is that Maureen is singing along to The Water is Wide as if she has known it all her life.  I don’t think she had ever heard the song before I began playing it on YouTube following her return from Alderlea Care Home.  There have been several other positive developments following her homecoming: yesterday was astounding as Girl Wednesday put in an excellent shift.

Maureen often plays up when Girl Wednesday is here.  Yesterday I feared the worst when Maureen took to the sofa almost GW greeted opened the door.  I expected to return home to the sound of GW coughing as Maureen remained asleep.  To my amazement, they were laughing as I opened the door and Maureen looked a treat: hair washed and clothing changed.  Then it got even better when I heard that Maureen had helped to prepare the vegetables for our lunch.  GW is a very experienced carer and said to me quietly before she left: ‘she’ll probably let me have it tomorrow.’  It will be interesting to see if GW can entice Maureen into helping her change and washing our bedding this morning.

 

I have already had a chat about a little project that Maureen seems interested in helping me with today.  She seems excited about renovating the bird tables that her sons have bought for us.  Both are in need of repair and I have suggested that she can be the Architect helping to design the necessary renovations while I take on the rebuilding work.  This small project opens all sorts of doors for cognitive stimulation and memories about small grandchildren excited about the prospect of feeding their Nana’s blackbird.

It is worth noting that GW and I are doing our best to stimulate someone who woke up this morning feeling it was too cold to walk to school this morning and wondering what the teachers would do if she didn’t attend.  Shortly afterward, she went to the bathroom forgot where she had been sleeping and made her way downstairs to lay on the sofa.  When I made my way downstairs to encourage her to come back to bed she was convinced she had spent all night downstairs.

No prizes for guessing which silver-haired Country Singer will greet Maureen this morning.  I think I will follow up our singing with French Lessons on YouTube again today.  We’re making do with YouTube as the Echo Dot is out of stock in Cleethorpes at the moment. Despite my fellow blogger George Rook singing the praises of  Alexa, I’m not sure how Maureen would take to another woman in the household!

 

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Dementia: It’s That Time Of Year Again!

Image result for It's That Time Of Year Again PictureGirl Wednesday has arrived with a worrying infection.  She hasn’t stopped coughing since she arrived.  She tells me that all the family has had it over Christmas.  It’s probably too late to do any more than tough it out this morning and I need a break from being on duty for 48 hours.  Thankfully, a friendly Librarian tipped me off about a Reminiscing Session that she is running tomorrow so I may cancel any further chances of Maureen catching an infection tomorrow.

The coughing has intensified whilst I have been typing so I will pop out for a short while and then send Girl Wednesday home on my return.  It would be pointless to contact our Care Agency for a replacement – it’s that time of year when they will struggling to fulfill their obligations

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