Dementia: Now I Understand!

 

I visited my mum and brother again yesterday afternoon.  Mum was such good fun as we sang along to YouTube together.  I fed our kid his evening meal and he rewarded me with some beautiful smiles.

There is little doubt that mum is bored for long parts of the day.  I can’t be much fun parked in the Residents Lounge with the TV constantly on blaring out inappropriate programmes.  It wouldn’t take much to brighten up her day: they know what she enjoys.

I’m always puzzled by my brother’s catatonic state and his restlessness as he sits continually shifting his position in his chair.  It is possible that his presentation can be explained by risperidone.  I was told yesterday that his medication means that ‘he is never any trouble.’  There are strict guidelines on the use of this antipsychotic for the elderly and I sincerely hope they are being applied in my brother’s case!

Dementia: Paying Tribute

I’m leaving Madhyamaka shortly to travel 130 miles to see my Big Fellow and my Dad’s Little Woman.  This means that I won’t be at the Ricoh this afternoon to pay tribute to Big Cyrille who sadly passed on Monday.  This afternoon I will be paying tribute to two heroes of my own who have supported me throughout my life.  They both have dementia.

I intend to make it to Coventry in time to see mum before it is time for lunch in her Cae Home.  Then I will move on to spoon feed my brother in his Nursing Home.

Neither my mum or my brother will have any recollection of that proud day for all Coventrians when Big Cyrille lifted the FA Cup.  It is also unlikely that they will know who I am when I arrive later this morning.  That doesn’t matter as I will never forget who they are and what they mean to me!

Dementia: A Warm Welcome But No Grugging!

I have decided not to set up a new page and will post news of my Retreat here:

Yesterday morning Gen Togden the Resident Teacher at Madhyamaka greeted me with ‘welcome back’.

We snatched a brief hug as we went our separate ways: he is teaching on another Retreat. Togden is always willing to hug and introduced me to ‘grugging’ on my last visit: a group hug.

Most of the time there are only two of us on ‘How To Transform Your Life’.  Working visitors join us in the evening when they are free from their voluntary duties.  As always they are young, enthusiastic and from all over the world.

One of the purposes of a Retreat is to rest and I’m certainly doing that; frequently dropping off when I’m trying to meditate.  There are another four teaching sessions today and I’m also going to take Precepts at 7 am.  This will be a new experience for me and I’m looking forward to a day of moral discipline and watching my mind.  However, I’m sure ‘grugging’ is not out of the question for the initiated!

 

Dementia: Thank God It’s Friday

Our Little Diamond is back this morning: fondly known as the ‘Pocket Rocket’ by her Agency.  It is a relief to know that she is also on duty over the weekend.  We haven’t seen her since Monday and her colleagues have struggled with Maureen.

I wouldn’t be at all surprised to see Maureen looking dishy after I’ve been out shopping this morning.  Our LD can generally ease her into the shower and help her to wash her hair.  I have seen how easily she gets Maureen to take her medication.  In the last three days, her colleagues have failed to get her to down her tablets!

My scheduled six-hour break didn’t happen yesterday: Girl Thursday wasn’t comfortable to be here for such a stint.  Unfortunately, she had not informed the Agency so I had to get back here  as soon as I could.

Maureen’s presentation can be very challenging and carers need to be cute to engage her in activities that will help her to retain her functional and cognitive capacity.  This is an issue I will need to talk over with our Key Worker.

Additional carer sits have now been agreed; to give me a weekly six-hour break one day a week and to allow me to attend Buddhist Meditation Classes on Wednesday evenings.  It will be frustrating if this means that Maureen continues to go to sleep when certain carers are here and then stays awake half the night!

It would be inappropriate to discuss any further the concerns I raised yesterday regarding the Local Authorities DOLs Application.   I have been advised to make a Formal Complaint about this matter

Dementia: Are My Knickers Needlessly In A Twist?

I’ll find out this morning if I have got my knickers in a twist based on a misunderstanding.  The Local Authority has applied to allow me to deprive Maureen of her liberty.  It is perhaps fortunate that their application- despite being accepted by a District Judge – requires revision as it contains several inaccuracies and misleading statements.  Consequently, I have been unable to complete my statement and have a meeting this morning to discuss my concerns

What I hope to clarify this morning is that I can exercise discretion.  If they really want me to become Maureen’s goaler I may walk away from being her Care Partner!

Dementia: ‘Happy Meal’ Saves The Day

When I returned from Cleethorpes Leisure Centre yesterday it soon became things were not good.  Hostility was in the air and I made it worse by stupidly suggesting that I took our grandson to see a neighbour’s dog.   This gave Maureen a further opportunity to vent: her husband wanted to leave her for a pet!

Fortunately, our daughter in law played a trump card by taking her two children out for a walk.  This gave me and Maureen’s son an opportunity to cool things down.  He told me how Maureen had spent the last hour convinced she was in the hospital awaiting treatment and their distraction techniques had not changed her reality.

The ‘Sound of Music’ in our sunroom set the tone for a change of presentation.  I didn’t manage to get Maureen to move into her normal dance routines but following a hug from her son and a cup of tea we moved on to join the rest of his family at McDonald’s.

A Chocolate McFlurrie saved the day and two grandchildren saw moments of the Nana they know and love.

 

Dementia: Whatever Happened To Positive Risk Taking?

 

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!

Dementia: Taking My Time Off

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?

Dementia: ‘You Need More Help Than That!’

 

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!

 

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!