Dementia: ‘You Need More Help Than That!’

Mixed Dementia, , ,

 

Image result for you need more help picture

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

Mixed Dementia, ,

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!

 

Dementia: It’s That Time Of Year Again!

Mixed Dementia

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

Dementia: From Despair To Hysteria

Mixed Dementia,

 

Hysteria word cloud concept. Vector illustration on white

I am wondering what to expect next from Maureen after a very troubled night.  Her early concerns were about missing babies, followed by fears of a dangerous intruder lurking in the house.  I found it difficult to get back to sleep after being woken twice before midnight and foolishly decided to get out of bed and go downstairs – I soon paid for this error of judgment.

No sooner had I gone downstairs than Maureen joined me.  She was preoccupied with her poor memory.  She spent a couple of hours trying to make sense of things.  Despite my attempts to shift her focus, she went over the same ground time after time.  ‘How had we got here, where did all the furniture come from and why couldn’t she remember anything about buying our current house?’ Several cups of tea and the occasional number on YouTube eventually helped her to get back to sleep.

When I returned for my morning shower Maureen was in tears because ‘no one would tell her what to do or where to go’.  Eventually, I discovered that she thought she needed to climb a mountain.  Once I encouraged her to lie down on the sofa she was in fits of hysterical laughter about her dilemma.  This went on for quite some time before she dropped off to sleep again.

Yesterday I regretted that I had cancelled our ‘Little Gem’.  I naively thought that because it was Christmas we could do without carers for a couple of days: I’m now well aware that dementia never takes a day off!

Updated at 9.30 am:   It’s a beautiful day in Cleethorpes and getting outside in the sunshine is an attractive proposition.  My problem is how to get Maureen out of her Bat Woman attire before we venture out without causing distress.  I know she has done her best to change her pants but there is no way I can let her wear them on top of her joggers in public!

 

 

Dementia: ‘What’s This Santa Thing?’

Mixed Dementia, ,

 

Image result for What is this santa thing picture

I have found it difficult to know how to play Christmas this year.  Now Maureen’s dementia has progressed to severe I’m often caught on the hop.  She clearly has little concept of time or place and often who people are.  Thankfully, she generally sees me as one of the good guys in her life: often her dad or her grandfather – sometimes ‘Paul’.  Although the latter is not always easy to fathom, as ‘Paul’ can be the man who runs this Care Home or her husband.

For the first time in ages, we have shared the same bed for the last seven nights.  This has meant that it has been much easier to settle Maureen if she has woken up distressed.  Generally, a small amount of physical contact and a few words of comfort have been enough to help her get back to sleep.  Unfortunately, this morning has been rather different.

Maureen woke in the early hours telling me she was parched.  The usual routine of a beaker of water became an elongated period of confusion.  Her questions were bewildering as she tried to determine her reality.  She even wondered if how she would know if she was drinking poison!  It took a long while to reassure her and persuade her to return to bed.  A couple of hours later Maureen was asking me: ‘what is this Santa thing?’  I couldn’t think of an appropriate answer and left her to her own devices for a while.

A short while afterward, I found Maureen downstairs in the dark.  She seemed relieved to see me, greeting me with: ”there you are I have been looking for you.’  Then she asked me: ‘if the boys had got what they wanted for Christmas?’ When I told her I was unsure as they lived away she said: ‘they come and see us sometimes though.’

Maureen is currently asleep in the single bed in our lounge; ‘my den’.  Deprived of my resting place I have been doing some domestic duties so that we can have a relaxing day together.  What I’m still not sure about is how to deal with ‘this Santa thing’:  should I give her the presents he has left in the spare bedroom or will that only add to her confusion?

Just as I am about to post this piece Maureen has come upstairs to see what I’m doing.  She has just said: ‘I wanted to get you a present’ – I have responded with what I have always said: ‘you’re presence is my present’.

 

 

 

Dementia: Bah Humbug?

Mixed Dementia, , ,

A recent article in Linkedin caused me to think about how to deal with Christmas now Maureen’s dementia is classed as severe.   Written by Rick Phelps it made the point that flashing lights, along with lots of noisy folks around, are the last thing he needed during the Festive Season.

When Maureen and I were out walking the other day I asked her if she would like us to put up a Christmas Tree.  She responded with we didn’t need to trouble ourselves as there were already plenty around.  However, we one spot of impromptu carol singing that evening and some friendly neighbours were delighted with our efforts.

Maureen woke this morning with anxieties about not wanting to get up the chimney.  Just to ease her concerns I held her tight, told her she wasn’t going anywhere and burst into song:

Happy Christmas and a Healthy and Peaceful New Year

 

Dementia: She’s A Little Gem

Mixed Dementia,

Image result for A She's A Real Diamond Picture

Maureen has been in great form since she came home from two weeks in Alderlea Care Home.  ‘Little Miss Dynamite’ has persuaded her to engage in personal care, change her clothes and take her medication every morning.  We are very fortunate that this real diamond will be with us for four mornings a week from now on.  Maureen doesn’t remember names these days but was keen to point out that she always enjoyed her time with the ‘tubby lady’: she said that this was a kind way of describing her friend.

The real glitter of LMD is her ability to be flexible in an attempt to meet Maureen’s needs.   Usually, they are singing together as I open the door after I have been out for a while.  Today, she has responded immediately to my suggestion that Maureen might enjoy doing crosswords again.  As I type I can hear fits of laughter from downstairs as she encourages Maureen to solve the clues.

 

 

Dementia: Let’s Stop Elder Abuse!

Mixed Dementia
 Stop Elderly Abuse.. Stop Abuse Period! This includes financially misusing their $ as well for your own profit or gain !!!
The following is an extract from today’s nhsManagers.net copied with the permission of the Editor Roy Lilley:
‘I can’t imagine older people putting-up with the way we treat them, for another year.  What other patients would accept being abandoned, dumped, marooned, shoved out, trapped and stuck in a revolving door?
Forget kindness or compassion.  Think about giving the supermarket your money, up-front, popping in for bread and bog-rolls, only to be told… there isn’t any.  It’s a rip-off.
Fees are a rip-off, inspection should ripped-up and looking at the quality of some homes; the owners ripped into.
Think about a lifetime of work, paying into the system, then being told; you’re a bed-blocker, a drain on the system, the cause of the problems, no room for you.   But, if and when there is; we’ll grab what few quid you have left… make you pay twice.
 
The organisations ‘representing’ older people should hang their heads in shame.
There’s an ugly cult of slyly and sneakily blaming older people for what is essentially our our failure to notice their presence in the system…  entirely predictable.  We have had a generation to prepare, save up and get ready.
The way we treat our seniors is disgusting.  I predict a backlash.  The Boomers, articulate and net-savy will not put up with what my mother’s generation endured.  Super-agers will be a super-handful.
There’s a discrimination that care services would not get away with, with any other patient group.  I predict, this year, ageism will become as unacceptable as sexism.  A new organisation, with real clout, will emerge to change the face of eldercare’.

Dementia: Magic Moments

Mixed Dementia,

The last few days have been sprinkled with Magic Moments:

My visit to Coventry got off to a lovely start.  Seeing mum smiling, singing and tapping her feet when I played her some of her favourite tunes on my phone brought tears of joy to my eyes.

There were different emotions at work when I caught up with my brother in the afternoon.  When I saw ‘our kid’ barely able to raise a smile I was glad I was able to hide my tears behind my tinted spectacles.  Thankfully, my eldest daughter’s girls helped me to end the evening with joy in my heart.

London is always a culture shock to anyone living in a small seaside resort like Cleethorpes.  However, with help from the locals, I made it meet my middle daughter at Kew Gardens.  We spent a lovely afternoon together.  My introduction to her partner couldn’t have gone better.  True to form I had dropped off in the pub when he arrived for our first meeting.  Once I stirred it was a pleasure to see how happy they were with each others company.

Even more magic moments came from extending my stay in Coventry.  On Sunday my brother was a different person smiling constantly as I sat beside him.  It may have been the Santa hat that was perched precariously on his head that changed his demeanour.  Perhaps it was hearing the rock and roll that I played him on my phone.  On the other hand, it may have been how carefully I fed him his Sunday Lunch.

Mum dropped off to sleep shortly after I called to see her on Sunday afternoon.  However, I will never forget the beautiful hug we had together.  She stroked my arm as we held each other tightly, something we have rarely done before as we are not a touchy-feely family.

When I called in to see Maureen at Aldelea Care Home yesterday she was laying on a sofa saying she wanted to go home.  When I told her that she could she thought she was dreaming.  Since we have been back home together there have been magic moments that would fill page after page…………

 

Dementia: ‘My Inner Peace is Non- Negotiable’

Mixed Dementia

Today’s Buddhist teaching is once again from Gen Togden:

Togden is an inspirational teacher as are so many of his colleagues at the Buddhist Centre in Pocklington.  He says his ‘inner peace is non-negotiable’ and that must be a wonderful place to be!

I have decided to stay in Coventry for a while longer.  Once the roads are a little safer to drive on I will venture out from the warmth of the Spa of my hotel.  I am certain that the best Christmas present I can give my mum and brother is to spend further time with them today.

It is far too icy to take mum out but I’m sure once I call up her favourite music we will be ‘tripping the light fantastic’ once again.  I haven’t decided what I’ll get up to with my brother apart from companionship, as he sits alone in his favourite spot in the Dining Room of his Nursing Home.

A text to my eldest daughter is all that will be needed for the evening’s food and entertainment.  I’m sure she will provide a gastronomic delight and her girls will put on another show as they ask Alexa to support their activities.

Sending yourself to Coventry isn’t all bad if you know the right people!