Tag Archives: Support

Dementia: Listening To Carers

Mixed Dementia

Image result for Supporting Carers North East Lincs Picture

Services in North East Lincolnshire always aim to support carers.  Both Focus Adult Social Care and NAViGO have heeded my plea.

When staff from NAViGO told me on Wednesday that Maureen was going to have a planned admission to the Konar Suite I was over the moon.  I was pleased that I would be out of the firing line for a while and someone else could be on the receiving end of Mrs. Dementia.  However, my thoughts were based on a classic mistake – which my Key Worker is always warning me about – ‘never make a decision when you are exhausted’.  After a good night’s rest, I saw things rather differently.

It has been reassuring that my change of heart has listened to and a bed in the Konar Suite is no longer seen as the way forward: Maureen needs time to let the dust settle after living on a building site for far too long.

 We are fortunate that we live in an area where carers opinions are taken seriously!

Dementia: I Did It Roy!

Mixed Dementia,

Image result for roy lilley picture

In his Newsletter yesterday Roy Lilley encouraged us all to say thank you to nurses.

There are four nurses who I have already thanked for their support in the last 24 hours:

Firstly, a Practice Nurse at Clee Medical Centre who confirmed I had a viral infection.

Secondly, a Nurse from the Konar Suite who gave me advice during the day on how to manage Maureen’s presentation.

Thirdly, my Admiral Nurse who has been nominated as my first line of contact. on all matters.

Finally, another Nurse and a Support Worker from the Konar Suite who made a home visit in the early hours and have provided ongoing coaching via telephone.

It is reassuring that I have nurses available for support 24/7 to enable me to continue to care for Maureen at home.  Unfortunately, despite lorazepam, it has been another sleepless night and I’m rather tired.

I have been assured that Maureen will be assessed this morning.  She appears to lack any semblance of cognition: struggling to understand basic interactions.  The times when she doesn’t recognise who I am are becoming more frequent.  She is currently chattering to imaginary family members and young children about events that have some resonance.

 I’m extremely concerned and wonder what will be the next steps on this journey?

Dementia: Good News Week

Mixed Dementia, , ,

Image result for Good News Week PictureTwo really good things happened last week.  Firstly, our longest serving carer had a little girl: we understand mother and child are well.  Secondly, her replacement managed to wash Maureen’s hair and give her a full body wash.  It looks like the ‘new kid on the block’ is now Maureen’s hairdresser.  Consequently, I have withdrawn from today’s Teepa Snow Webinar on Bathing Issues as personal care needs to be in the safe hands of ‘the ladies’.  My focus needs to be on the completion of our renovations and securing adequate coaching.

The  good news for the forthcoming week is that our decorator will be on site today and a joiner later in the week.  I would estimate that we are still a couple of weeks away from completion; with further plumbing and electrical work pending.

There is still uncertainty over the coaching I’m legitimately entitled to as Maureen’s Care Partner and whether Maureen should have a Care Coordinator.  Clarification on these issues may not take place until the Best Interest Meeting on the 3rd of November.   In the mean time my Admiral Nurse is doing her best to fill in the gaps in available support.

Maureen is still struglling with her upper underwear and trying all sorts of permutations for support.  I’m hoping that Girl Monday will be able to help her with this today and she will gain some respite from the attendant distress.  I summoned help on that front last night but by the time night carers arrived Maureen had dropped off.

We had another ‘visitor’ during the early hours when Maureen believed her mum was  beside her on the sofa.  She seemed to gain great comfort from believing her mum was close at hand: some hallucinations have a positive impact!

There is some bad news this morning: my infection is not letting up; my nose is dripping like a tap,  I have a persistent cough along with discomfort in my chest, and my legs feel like jelly.  I have already messaged our Key Worker that additional support may be needed if I am to keep Maureen safe and sound over the next few days.

 

Dementia: ‘Coming In From The Cold’

Mixed Dementia,

Reggae has always had great resonance for us.  The words of the above number have great significance in our household this morning:

  • Maureen’s cold broke yesterday.  I have never been so pleased in my life to see a loved on coughing and sneezing: at last, there was an explanation for her presentation – infection!
  • I had a long conversation with the Specialist Doctor who prescribed Trazodone yesterday and she understands why I haven’t opened the bottle.  We are very fortunate that staff within NAViGO treat the person rather than the disease.

Maureen’s Tea Boy has additional duties this morning: ensuring tissues are at hand!

 

Dementia: 11 Things To Start Doing For Yourself

Mixed Dementia, ,

A helpful creed to live by from the Alzheimer’s Care Resource Centre:

I’m am breathing properly, softly and deeply as I try to figure out where the hosepipe issue has come from.  For the second morning running, Maureen has been scared that ‘they are going to turn the hosepipe on her’.  I can understand that she may have been dreaming that she had left potatoes cooking when she awoke at 3.30 am this morning but where have the fears about the hosepipe come from?

Sorting out my breathing is relatively simple.  The test will be whether I can embed the other ten things in the above list within my approach to life!

 

Dementia: ‘They All Know Us’

Mixed Dementia, ,

Image result for Citizen Khan PictureI often adopt a Citizen Khan approach to our life: frequently telling Maureen ‘they all know us’.  Once again the locals came to my rescue yesterday afternoon when Maureen gave me the slip.  It was another one of those farcical events that can leave you bent over with laughter when you look back.

I had been having a Sunday afternoon snooze and woke up to find Maureen had done a runner.  When I made it to the front door she was walking by and I hailed her with ‘hello Blondie’  she responded with ‘I was trying to remember where you lived’ and walked on.  I stopped to talk to a neighbour as Maureen started on a familiar route around a local Court.  Then I walked on to catch her as she completed her circuit but no Maureen. I checked with my neighbour but she had not passed him as he tended his front garden so I retraced my steps thinking she may have gone into someone’s garden.  A few minutes later I gathered what had happened when my neighbour said she was in a Close opposite our house.

Maureen had obviously doubled back and that was why she had not met me at the end of the Court.  Then she had gone back towards our house and ended up in the Close.  When I found her she was on the arm of a woman who lives in a bungalow opposite our house.  She has been kind enough to let us park our car on her drive while skips have taken up our normal parking space.  To show our thanks for her kindness I invited our neighbour in for a cup of tea and she stayed and chatted for a while.

It is so helpful that our neighbours know us and are aware of Maureen’s condition.   I always know if she slips out some kind soul will be on her case within minutes to keep her safe and sound as they usher her back home.

Dementia: Take A Breath With Teepa

Mixed Dementia, ,

The other day a relative asked me for some advice the on how to provide support that would be helpful to Maureen during his visits – so I pointed him in the direction of Teepa Snow:

I have had to follow Teepa’s advice many times during the last 24 hours.  I am the only person who has been able to persuade Maureen to take a bath or a shower in the last couple of months.  There was a heavy price to pay for my success yesterday as Maureen struggled to accept that she had chosen to spend the day in her dressing gown without anything underneath.

Early this morning, things were very challenging with Maureen becoming hostile as she tried to resolve a clothing crisis.  She became rather uncomfortable when she put the leg of her pants around her waist and began lashing out at me in frustration.  Help arrived in the form of Night Rovers as things had cooled down.  By the time that the ladies from arrived Maureen had pants. PJ bottoms and a T Shirt on for the first time since her Sunday morning bath.

One of the problems at the moment is that Maureen is finding it difficult to hear or understand what I believe to be straightforward instructions.  Taking deep breaths along with giving simple instructions has to become automatic from now on.

Slightly more than deep breathing might be needed this morning as all windows are being replaced at the front of the house. At the same time, our builders are into the final week of the Sun Room.  It’s another one of those occasions when there is no gain without pain.  Once our window fitter is done, Maureen will no longer be looking through leaded windows which remind her of a prison cell.  The Sun Room will mean that Maureen’s Care Home is fit for purpose at long last!

Dementia: Seeking Firmer Ground

Mixed Dementia,

It has taken our builders a couple of weeks to prepare the ground for our Day Room.  The footings have now been dug, the concrete poured, and bricklaying will begin in earnest today.  As I have watched their painstaking work I have been involved in a similar process of attempting to seek firmer ground for the weeks ahead.

Following a sound performance by a new carer at the weekend I’m in an optimistic frame of mind this morning.   She played it well; never invading Maureen’s space and providing support when it was needed.  Her Sunday Dinner was so good that Maureen didn’t even know there was a new chef on duty.   So despite a change of personnel my aspirations to be relieved of time in the kitchen at the weekend can still be fulfilled.  The inside information I have on a carer who will be making her first appearance here today is also good, so that is a relief.

A month has almost passed since my Pilgrimage to Paddington and it is time for another break from my caring duties.  I’m hoping that Maureen will be able to stay at home this time and avoid the fall out from being in a Care Home.  Our Night Sitter is in the process of confirming her availability to ‘live in’ during my absence which has been agreed as ‘in Maureen’s Best Interest’.

Our Day Room will really begin to take shape this week if we are blessed with fine weather.  Patience on my behalf and a little bit of luck might just help us on our journey!

Dementia: Moving Ahead

Mixed Dementia

Pravs J - Keep Moving Ahead

I have decided not to tempt fate by calling yesterday ‘Wonderful Wednesday’ because as soon I sat on the physio’s table at 8.30 am I  knew that it was going to be a good day.  In capable hands once again, I realised that the sleepless nights because of severe pain in my right shoulder were coming to an end.  My destiny on that front is now in my own hands; do the exercises, pay for private treatment and all will be well.  A couple of hours later things became clearer and got even better.

Harrison House is across the road from St Hughs Hospital and the cafe was a sensible place to meet our Key Worker.  We often meet there as it gives me the opportunity to thank the staff who supported me during my darkest hour.  Yesterday, I had the pleasure of meeting a Psychiatric Doctor who had recently become a Consultant: he was genuinely pleased with my congratulations and my ongoing praise for his support.

As always, I  had a productive meeting with our Key Worker.  He helped me to see that my panic over the DoLS issue was understandable but rather misplaced.  Although Maureen’s liberty has to be restricted at this moment in time (see below) it is a means of her remaining safe in her own home.  We also discussed a number of other matters in relation to our Support Package which it would not be appropriate to outline here.

The cream on the cake came during late afternoon with the arrival of a builder to look at the plans for our Day Room.  He had been recommended by a tradesman that we trust and I immediately liked his style, especially with Maureen.   As soon as I explained our situation his empathy and understanding was clear: his personal experience obvious – his mother passed away following a period of dementia.  I hope it won’t be long before he’s ‘digging out’ to lay the foundations to improve the state of ‘Maureen’s Care Home’!

Footnote:  The current Occupational Therapy assessment is that Maureen is not safe in the community unless she is escorted.  I’ve had a successful career in the field of Lifelong Learning and we need to consider if it is possible for me to teach Maureen how to become safe in the community once again.

 

 

Dementia: ‘They All Know Us!’

Mixed Dementia

 

Image result for citizen khan pictures

We would not be able to cope without the support of lots of people who live in our vicinity.  I often adapt a Citizen Khan quote ‘they all know us’ to summarise our notoriety in our neighbourhood.  What the locals know is that Maureen has dementia and we both need their support on a daily

Local shop assistants are a great help even when they have customers waiting to be served.  We often pop across the road see our friends in local stores who are all willing to give us time and consideration even when we have just called in for a chat.  If I’m out ‘wandering’ by myself the first question locals ask me will generally be associated with Maureen’s welfare.  Whenever she slips out without me noticing it would be unusual if someone doesn’t tip me off that she is out by herself: frequently they ease her back to the safety of her own home.

If ever I’m struggling with her presentation I’m spoiled for choice over whose door I can knock on for a little distraction and redirection.  I can honestly say I have never been turned down at any time of day or night in my hour of need.

When I spotted Hattie and her mum across the road yesterday I thought it was an opportunity too good to miss.  Maureen adores the company of little children and loved having a toddler on our drive.  It’s a shame that both of our families live so far away so I think we might ‘adopt’ Hattie and her brother.  He wasn’t around yesterday as he had gone to visit relatives in Coventry.  If we had known we could have asked him to pop in and see some of ours!

Maureen greeted Girl Sunday with ‘we’re seeing a lot of you lately’ – possibly remembering that she had been with us 24 hours before.  They did some sterling work tidying up while I went to top up our provisions for the week.

Following a siesta, we had a lovely afternoon as Maureen watched me pottering in the garden through the patio doors.  She popped out occasionally to assist and praise my efforts.

With vascular dementia, you can never predict how the day is going to turn out but it was good to enjoy the ‘Day Of Rest’ yesterday after a very busy Saturday!

I completed drafting the above just after 9 pm last night as Maureen lay fast asleep on the sofa.  I’m back on the keyboard shortly after 6 am, so I’m almost sticking to the regime I outlined yesterday and how the last nine hours went are outlined <HERE>.

I’m going to suggest that Girl Monday offers one of her Pamper Days this morning.  She has an excuse to guide Maureen into the shower as she is now half-way into her pregnancy and finds it difficult to bend over the sink.  I’m hoping my ‘Silver Lady’ will look a million dollars when I return from the Leisure Centre – attired in the outfit I have left on a hanger.  With her hair such a beautiful shade now I called up David Soul for her on YouTube yesterday: