Dementia: Taking Gardening Leave

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I’m tired this morning after a challenging day yesterday.  I think the best way of coping today is to take self-imposed ‘Gardening Leave’.

We got off to a positive start yesterday with great news on the BP front 130/70 revealed at our local chemist.  Then it was on to a local Car Boot Sale where we snapped up a couple of bargains including one for a Sunderland fan.

Maureen was asleep when a new carer arrived.  When she and awoke she seemed startled to find a stranger in the house.  I think Elaine blotted her copybook by trying to physically guide Maureen.  One thing Maureen hates is a misplaced hand that treats her as on old lady or a child.  This resulted in Maureen taking to the utility room for safety; so I thanked Elaine for her help and encouraged her to ‘clock out’ a little early.

Lunch was a disaster as Maureen spat out the aubergines – clearly not impressed with my efforts.  I should have known better and stuck to more familiar fare!  My sweet rescued the day and Maureen took to the sofa shortly after lunch.

The afternoon did not go well with the Sky Blues failing to score yet again and Maureen going AWOL as they went into extra time.  I have no idea where she went or how she found her way back home: she appeared at the back door as I was about to summon the police.  My searching in the car had been fruitless and none of the neighbours had seen her take off- very strange indeed!

A late tea went down well but Maureen remained restless in the evening ‘shadowing ‘ me as I tended the garden. alongside.  She also complained about the dangerous state of a passage way at the side of the house.  As darkness arrived she became very confused not knowing where she was or how we got here (sundowning ?).  At one time I thought our new sleeping arrangements had become redundant but as I was about to go upstairs she let me off the hook by saying that I could stay in the same room as I wouldn’t be in her bed.

The night has passed relatively peacefully with reassurance helping Maureen get back to sleep on a couple of occasions.  I have decided to draft an early morning post to help clarify my best approach to today.  Maureen appears to have taken an instant dislike to the new carer and I can’t see the two of them hitting it off: a ‘hands on’ approach will never work here.  My current thinking is to cancel the Sit and take ‘Gardening Leave’ for the rest of the day as a general tidy up might just satisfy the Health and Safety Officer (Maureen).

Now where is that wheelbarrow!

Edit: Change of plan – spoke to Agency at 8 am they will advise Elaine to be in the background to see if Maureen warms to her this morning.

Love Life Loss – A Roller Coaster of Poetry Volume 2 : Days with Dementia

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Another excellent post from Kate Swaffer: I look forward to the day we meet I’m fed up with cyber hugs!

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

love life loss v2 coverWhilst I have been too unwell to work, study, or do anything much of any real usefulness for the last couple of weeks, various things have been happening behind the scenes, the product of past work. My second volume of poetry arrived, quite unexpectedly, in the mail this last week, and is already available online. The image here is the front cover, and although it is not hard back, like my first self published volume, I’m very happy with it. I’m also happy to say, although restricted to rest for at least another week, I am slowly recovering, but I did want to my news!

Amelia Walker, now a dear friend who I met when we studied poetry together in our BA, who even then was a published poet, and has since gone onto get her PhD in poetry, wrote the most beautiful forward for this volume, which I am…

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Dementia: Is This A Plateau?

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Maureen showed signs of capacity yesterday that I feared were gone forever.  She made herself a cup of coffee without any prompting and also put washing on the line.  I need to be very patient today providing prompting at appropriate times to support her to find purpose in her day.

There is no doubt that as exceptional support has arrived from Focus and Navigo I have felt a little more relaxed in my caring role.  We are very fortunate in the range, and quality of support, that is available here.  Unfortunately, there is never enough money to go around and like anywhere else professional staff are pushed to the limit by the Austerity Programme.

I have already improved the layout in our lounge/bedroom this morning.  What I had hastily thrown together yesterday helped us both to have a better night with comfort at hand whenever Maureen awoke.  Unfortunately she is still very nervous following her experiences in Ladysmith Road Care Home and I have some unfinished business in that quarter which I hope to progress next week..

A new carer is her at noon from the same Agency as last weekend.  If she is half the woman of her predecessor then it can only help, as Dianne was great.  She is back next week so one more piece is now in place in a jigsaw of support that can only help as we move forward on this hazardous journey.

 

Dementia: Pulling Out All The Stops

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SI have to take my hat off to Focus Adult Social Care.  While I’ve been making the most of my new sleeping quarters they have been pulling out all the stops to provide Carer Sits that are needed to keep us both in good health.

Duty Social Workers have confirmed they have arranged care at the weekend.  The great news is that we will have Dianne every other weekend following such good work last week.  They have also had positive discussions with our Agency so I will be able visit family in Coventry on Monday 22 nd of August.

It’s fortunate that some folk are on duty on Friday afternoons while others take a siesta.  In fact I slept so well in my new Den that I almost missed confirming  the proposed arrangements met our needs.

I sincerely hope that the weather stays sunny over the weekend so hard working professional staff can have an enjoyable break.  

Focus certainly put their money where their mouth is: ‘supporting carers’.

Dementia: Conversion Completed

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This morning our lounge has been converted to double up as a bedroom.  We will be sleeping in the same room once again: Maureen on the sofa; me in a single bed.  This should mean that I get more sleep as I will be able to settle Maureen as soon as she stirs by reassuring her I’m by her side. Progress has also been made on most of the items on my To Do List but it looks unlikely that Chloe will be able to entice Maureen into having one of her Pamper Days.

Maureen has been in good form this mornin -g it’s clear that she has much greater capacity to do things when she has energy.  She coped relatively well with putting washing on the line and has kept herself busy until she took to the sofa for a doze a short while ago.

I’m taking a break now: off on walkabouts to enjoy Costa del Cleethorpes at its best

Dementia: Busy Day Ahead

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Today’s To Do List:

  1. Carer (Chloe) to encourage Maureen to shower and wash her hair.
  2. To assist Maureen to put washing on the line.
  3. To convert our lounge to double as a bedroom for two.
  4. Confirmation of weekend Carer Sits.
  5.  Reclaim Chloe our most experienced carer for Monday morning.
  6. To progress deadlines from Carers Assessment E Mail.
  7. Play lots of music particularly Immortality and others on today’s Good Music page.
  8. Meditate
  9. Tai Chi in the garden.
  10. Gardening: tidy up borders and vegetable plot.

We’re already off to a flyer this morning with Maureen making her own coffee for the first time for a while.  I’m confident with prompting she will put washing on the line shortly.

One of the things I’m learning is to pick my moment: to know when to leave things until another time.

 

Dementia: Seeking A Foothold

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I have just sent the following E Mail to the Head of Casework at Focus Adult Services:

‘My Carers Assessment has been cancelled yet again today.  With Gary off sick I guess there will be little progress on Best Interest issues.
I am requesting that my aspirations outlined in my earlier message are acted upon without prejudice.  Maureen’s dementia continues to progress and I need some sort of foothold to enable me to cope..
I have to add that my day trip to Coventry on the 19th of August was requested earlier in the week and needs to happen.  Things are not good in that neck of the woods on several fronts and I need to be there’.

Dementia: Completing My Carers Assessment

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I’m meeting our social worker at 11.30 am this morning to complete my Carers Assessment

If I am to have a life of my own alongside being Maureen’s Care Partner my shopping list of aspirations is as follows:

  • Daily 3 hour sits from 1o am until 1 pm with a regular team of Carers.
  • Maureen to attend Day Care from 10 am until 5 am, ideally for two days a week, at Royal Court Care Home.  Provisionally from week commencing Monday 22nd August.
  • One trip a month to visit family in Coventry or London with care from 7 am until 9.30 pm.  Next trip Friday 19th August
  • Three days of respite a month for Buddhist Retreats, at the Madhyamaka Centre in Pocklington, with wall to wall care from 7 am on the first day until 6 pm on the third.  Next trip Monday 5th September onwards.
  • Professional support to continue to be provided by Focus, Admiral Nursing, the Home Treatment Team and Clee Medical Centre.
  • Family members to commit to scheduled visits (needs coordination).
  • Daily meditation by following teachings on YouTube and reading.
  • Regular attendance at Tai Chi classes.
  • Regular attendance at Cleethorpes Leisure Centre.
  • To continue to grow vegetables and use gardening as ‘in house therapy’.
  • To meet my Lifelong Learning needs through On Line Courses.
  • To remain a card holding (inactive) member of the Labour Party.
  • To reinvigorate my role as a volunteer with the local Dementia Engagement Project.
  • To continue blogging my experiences as a Care Partner.
  • To continue following the fortunes of Coventry City via Sky Blue Player.

Two important principles: no more vagaries from me and all arrangements for care to be reliable and sustainable. Time also for me to reflect on the Serenity Prayer:

Edit: Social worker off sick so the meeting is cancelled.

Dementia: Sad News On Two Fronts

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Yesterday was not good news on the dementia front as all I heard about and saw was evidence of further decline in my two favourite ladies.  During a telephone conversation with my sister in the morning I heard that mum is deteriorating as her dementia takes its toll in all sorts of ways. It is the same story here as the progression of Maureen’s dementia shows no sign of letting up.

All of our Carers are commenting on Maureen’s increased level of confusion and lack of energy. When they arrive in the morning she chats to them for a while and then returns to dozing on the sofa.

I was glad that I had my glasses on in the afternoon as I watched her struggle to put washing on the line.  The transition lenses would have hid my tears as I watched her put pegs on the line and leave washing in the basket.   Maureen hasn’t forgotten how to dance though and we managed a smooch around the kitchen to Barbara Streisand as she returned from her efforts in the garden:

I’m taking no chances now and keeping Maureen firmly in hold when we dance: at 70 years of age it’s about time I learned to lead.

It is possible that yesterday was one of those days and Maureen will be able to hang out the washing if the rain stops today.  I certainly hope so because it is one of her favourite jobs, as she loves to be outside in the fresh air.  She did help with drying the pots and pans as we tidied up the kitchen together in the evening but she can no longer remember where to put things away.  As the Home Treatment Team reminded me earlier in the day she is now at a stage where helping her to find some purpose and minimising distress are the priorities.

I will be posting again in a couple of hours in preparation for my Carers Assesment meeting at 11.30 am this morning.

 

 

Meet Victoria

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This post is worthy of wide circulation and is particularly pertinent to our current situation.

Ann Napoletan's avatarThe Long and Winding Road...

This video is not only a lovely tribute from a daughter to her father, but it carries an important message. No matter how far along someone is in the disease, they deserve our attention, love, and respect.

Too many people still have this false notion that once a loved one no longer recognizes them, there’s no reason to visit. It pains me that this line of thinking still exists. Even in the latest stages, there are moments of clarity, and we just don’t know when they’ll come, but regardless, every person on the planet needs love, affection, and human interaction. Whether they remember you or not, they need you. Please don’t forget this.

Victoria’s father was diagnosed with young onset Alzheimer’s when she was just 19-years-old. Here is her story.

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