Tag Archives: Support

Dementia: The Dynamic Duo

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I would want to commend our social worker on the way she handled her visit yesterday.  She contacted us in the morning and agreed to call after lunch.  The prospect of her visit led to considerable anxiety on Maureen’s behalf.  She thought that her liberty was at risk, and the social worker was aiming to put her in a Care Home.

I spent a large part of the morning assuring Maureen that we would be remaining together, in our own home.  However, she kept going back to Tracey’s last visit; where she thought attempts were being made to ‘catch her out’.  She kept returning to the theme of ‘being frightened’ and the social worker’s need to explore this issue.  Maureen said : ‘I think she was trying to see if I was frightened of you’.

It soon became clear that no matter what I said Maureen was ‘frightened’ by the prospect of our visitor at 2.30 in the afternoon.  I alerted the social worker in a brief E mail that I would try to phone her; about the risks associated with her visiting without an update on Maureen’s presentation.  Unfortunately, I couldn’t get to the phone to have a brief chat about things.  As a further attempt to cool things down I suggested a walk to get some sea air.

I deliberately elongated the walk,  to minimise thinking time once we returned home.  We were still eating omlette and chips when Tracey arrived.  My hosting role as ‘tea boy’ gave me an opportunity to ‘warn Tracey off’.  It’s amazing what you can communicate while taking a drinks order.  A nod, thumbs up, and a wink from Tracey was all that was needed.

Any video recording of what followed would have made a few bob as a training aid.  Tracey did the business in a sensitive way by taking a ‘rain check’ on things.   Bat Man and Robin couldn’t have done things any better by reassuring Maureen how well she is doing.   The issue my weekend away never surfaced. It’s amazing what a tea boy and a social worker can come up with in a few minutes together.

I am not sure if we are Pussy-Footing Around around, yet again, or working with Maureen’s mantra of: ‘slowly slowly catchee monkey’?  However, as a Trade Union Official once said to me: ‘Never mind the posturing: it’s outcomes that really matter’.

Dementia: No More ‘Pussy-Footing’ Around

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I am going to try another approach to getting some time off -respite- from my role as a Care Partner.  It is two months since I had a break, and then it took a threat to abandon Maureen before I got a chance to visit my family in Coventry.  This time I have given far more notice of my plans.

In the past my opportunities for organised respite have often been frustrated.  On occasions I have been let down at the last minute, and had to cancel travel and hotel bookings.  This has left me frustrated, and out of pocket.  It has also led to disappointment for family members who are beginning to question their status in my life.  I fully understand their concern, and upset.

Social services now have a couple more weeks to sort out Maureen’s care in my absence.  They will have to agree with her what is needed while I’m away from home.  I need a break, and to see members of my own family.  I plan to take my time off: it’s social services responsibility to ensure Maureen is cared for in my absence.

I look forward to receiving details of the arrangements that will be made while I’m away from home.  I will take legal advice if I feel the inaction of social services put Maureen’s or my welfare at risk.  I can see no other way forward.  I’m absolutely fed up with social services and our Care Agency passing the buck, and care not being available.  This ‘pussy-footing’ around needs to come to an end.

This is an early morning post because  we went to bed early.  I will be blogging about that, and Maureen going missing once again, later today

Dementia: Admiral Nurses Should Be Available Throughout UK

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There are lots of things that don’t add up as we travel on our journey with dementia.  I am focusing on Admiral Nurses today; following bidding farewell to Heather this morning.  Although Mel her replacement will be looking after me before Heather jets off to New Zealand, I can’t help wondering why Admiral Nurses are not available throughout the UK.   Anyone who has dementia within their family faces a steep learning curve.  It is ridculous that there is a post code lottery  determining the availability of  Admiral Nurses to help you on your way.

As regular readers of this Blog will recall; my mum, and brother also have dementia.  When I think of the mistakes I made with my initial reactions to their behaviour, I shudder with embarrassment.  We were all taken aback by John’s behaviour when my dad died.  None of us could fathom his inability to grasp simple detail: we had no idea that his short term memory was failing.  How on earth could we be expected to know what was behind his gaffs and out of character behaviour?  We had no idea what was wrong or how to deal with someone who might have dementia.

I committed a cardinal sin, or two, in the early days of mum’s decline.  She told me she must have had an argument with dad as he hadn’t been to see her in her Care Home.  Like a fool I reminded her he was dead.  Being a thoughtful son I also took her to see John shortly after he had been incarcerated in his Nursing Home .  Not up to speed with dementia I did her more harm than good: she gathered he didn’t recognise her.

There is a steep enough learning curve for any of us on this journey.   Without guides we can only stumble along the road and damage others in the process.

Dementia: The Only Way Is DIY

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Maureen woke at half past three this morning wondering if staff were on duty in this Care Home before dawn .  She wanted a cup of tea, because her mouth felt dry, and  was very pleased when I told her I would help as I knew where  things were.  I couldn’t leave her to her own devices anyway, as she often tries to boil the kettle without the lid on.  When we got out of bed she expressed concern that we might get into trouble for waking the other residents up. Then she said it didn’t matter as we were being kept here because: ‘they thought we were mad.’

It’s not surprisng Maureen is awake at this time of the morning; she went to bed very early last night.  It is possible that I woke her early this morning after visiting the bathroom.  She is now back in bed, with tea, and will have little difficulty going back to sleep. Unfortunately, once I am awake It is difficult to ‘switch off’ with my thoughts on ‘what next?’

I gave an early morning airing to the possibility of swimming during the next few days.  The initial response has not been positive, with concerns about the water in the pool being cold.  It could be I played my card too early.  I will return to this theme later and keep pushing out the boat until it is floating on the water.

My other predominant thought is getting to see my own family.  Scarlett a regular contributor to Talking Point asserts that DIY is the only way of making such things happen.  She shares her experiences as follows:

During my 12 year “journey” with John, along the Alzheimer’s path I learned

(a) Nobody phones you back when they say they will

(b) Appointments are cancelled at a moment’s notice, and rescheduled

(c) Then they’re cancelled again

(d) Social Workerss, et al, are constantly on annual leave, on a course, sick or at a meeting

(e) Don’t assume that once you’ve explained everything in great detail, and “someone” has been sitting in your home, writing notes – that’s it. Because …

(f) Every new person you encounter wants to carry out their own assessment

(g) Being stoic, and not bothering anyone, gets you nowhere

In the relatively short time that I have been a Care Partner my  experiences mirror Scarlett’s, and many others, from what I have read on Talking Point.  I simply have to grasp the nettle, and develop my DIY skills, if our journey with dementia is to progress in the right direction.

The only way I am going to be able to see my own family is to arrange the care that is needed for Maureen myself. That way I will not be depending on others; who may have other priorities.  The time has arrived to build a positive relationship with staff at the new Care Agency.

Dementia: A Care Giver Knows

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I cannot think of any better words that sum up what it is like for me to be a Care Giver to my wife than the following:

A Caregiver Knows…

Did you ever wonder how much pain and grief your heart could take?

A caregiver knows.

Did ever wonder how strong you are, how many things you can do at once, or how many failed attempts you could endure?

A caregiver knows.

Did you ever wonder if frustration, anxiety, or sheer exhaustion could actually kill you?

All too often, caregivers know this too.

Have you ever cared for someone, who instead of getting slowly better, is slowly fading away, piece by piece… right before your very eyes?

Have you ever felt the despair and hopelessness of that?

Caregivers for dementia patients know this despair and live it every single day.

The remainder of this piece can be found at: A Care Giver Knows

Dementia: Whatever Next?

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Life is never straightforward when you are living with dementia.  Yesterday didn’t get off to a good start with news that Chloe brought with her when she turned up for the carer sit.  Her conditions are to become even worse when the new Agency takes over next week:  the hourly rate is going to be reduced and the slight enhancement for working weekends is going to be removed.  I listened intently to the news, and questioned if such changes were legal with the regulations around transfer of undertakings.

I have mentioned before that paid carers and Care Partners need to get organised.  A Trade Union for all those involved in the care industry is needed.  I can see no other way forward to end the blatant exploitation that is currently taking place.  We decided to keep the bad news from Maureen but it is posiible that she has ‘came out in sympathy’: taking to her bed following Chloe’s departure.

It looks like the clothing issue has resurfaced yet again.  Maureen spent a long time after Chloe had gone deciding that none of her clothes were suitable, and retreated to her bed exhausted.  Underwear that appeared to be suitable has now been declared too tight, and having no clothes has surfaced again as an issue.  She stayed in bed for the remainder of the day despite my gentle encouragement to get up.  That meant that her only meal of the day was breakfast and she did not taken her evening blood thinner.  I saw no point in doing battle over that – she is reluctant to take it at the best of times.

My optimism about solving the clothing issue has diminished.  Perhaps apparent progress being little more than a false dawn in the general discomfort that is a feature of Maureen’s presentation.

I had a relatively a positive phone converstaion with the new Care Agency yesterday afternoon. Time will tell if they match their compassionate rhetoric with practise.  It is not going to help that the hard working Chloe, and her colleagues, are going to have less in their wage packets.

Dementia: Becoming A Better Care Partner

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As a Care Partner it is easy to look around and point the finger at what others could be doing a little better.  That is simple and anyone can do that all day long.   What is a little more challenging is to look at your performance as a Care Partner and see if you can sharpen up your act.  This is not a Sunday confession session, it is an attempt to list a few things that might just make our journey with dementia a little easier for us both.

The point of departure is an acceptance that Maureen’s dementia is progressing .  Confusion, distress and fear are now predominamt in her presentation.  What follows is a list of things I can do to help us as we travel this road:

  • To attempt to understand Maureen’s reality
  • To attempt to help others to understand Maureen’s reality
  • To listen rather than talk
  • To use simple language and short sentences
  • To stick to one subject at a time
  • To be visible as much as possible
  • To keep the house tidy
  • To have set places for things
  • To pare down Maureen’s clothes even further
  • To attempt to keep Maureen in a positive state of mind
  • To find meaningful activities
  • To socialise in appropriate circles
  • To accept that Maureen’s world is shrinking
  • To try to secure an appropriate Care Package
  • To continue to utilise skills and knowledge within relevant reference groups

I am hoping to blog later in the day on Maureen’s reality.  It depends on how the day progresses.

Dementia: Additional Care Needed To Cope With Further Decline

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I could give examples galore that illustrate how Maureen’s dementia is progressing and the impact it is having on me, Perhaps just a glimpse of the last couple of days will suffice.  On Tuesday night Maureen insisted that she always slept on the sofa as she didn’t have a bedroom here. At 6 am on Wednesday morning she awoke and said: ‘Where is everybody?  I thought you had all gone out and left me on my own again.’  She was very frightened; confused and agitated.  Her confusion continued well into the morning.   When a carer knocked at the door at 10 am Maureen greeted her with:  ‘Hello who are you and what are you doing here?’.  Later in the morning she confided in me that it was: ‘Very naughty of the Care Agency to send people without giving us warning.’  This morning she woke at 2 am and asked: ‘if it was time to get up’ and the same again an hour later.   I could go on……..

The top and bottom of all this is Maureen is extremely confused for large parts of the day.  She is very frightened if I am out of sight, as she fears she has been left on her own.   On occasions she is not sure who I or the carers are. She frequently doesn’t know where she is. Her ability to distinguish between day and night has gone.  Generally, her attempts to assist with household tasks only helps rather than hinders if she is continually prompted.   In the last few days she has been outside the house partially dressed.  It is no longer sensible to leave to Maureen in the house on her own.

I now feel I have to be on constant watch to keep Maureen safe and sound.  This is fundamantelly different to her presentation when our current Care Plan was drawn up.  Therefore, the demands on me as a Care Partner have increased significantly.  Hence the need for an urgent review of our situation.

There are a number of things that need to happen to cope with the ongoing progression of Maureen’s dementia.  Something needs to be done to deal with my present level of exhaustion as carer burnout may be near.  I have informed our social worker accordingly and Tracey is trying to arrange additional support.  Unfortunately she is on a training course for the next couple of days and is dealing with a  Care Agency that continues to be in turmoil as it hands things over to another concern.

I have managed to progress a couple of matters that should make life simpler and safer for Maureen.  Yesterday morning I  pared down the clothes in her wardrobes so that choice is no longer so much of a burden.  I am hoping that fewer outfilts will simplify life for her in the morning.  In addition, I have ordered a walkie talkie type monitor so that Maureen can contact me immediately when I am out of sight.  This will also allow me to be in the garage or garden and know that Maureen is safe in her own surroundings.  I am hoping that this will reduce the times when anxiety kicks in when Maureen thinks she has been left alone in the house.

So Monday becomes another D Day here with the social worker calling around one’o’ clock to see how things are going.  It would be great if she has been able to set up a couple of additional sits before her visits.  That would really help to get things off on a positive note as soon as she walks through our door.

This is a very early morning post and I am hoping that now I have got this off my chest I might manage a little more sleep.

Dementia: ‘He’s Taken All My Clothes and Money’

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I could see that Maureen was giving me funny looks yesterday morning and  behaving rather strangely.  This followed on from considerable confusion on the Sunday evening.  Around 8 ‘o’ clock she mentioned that I had not returned from watching a football match.  She was convinced that I had been watching a local match at a nearby park.  At 10 ‘o’clock she asked me if I would help her to go out looking for me as she was beginning to get worried that I had been out for a long time.  We walked for a while and she continued to talk to me in the third person.

On our way back home Maureen took a wrong turning and I called her back onto the correct route.   She immediately recognised me as her husband again and carried on with a normal conversation.  We went to bed shortly after returning home, after the usual ritual of finding missing gear.

When Chloe,our carer, arrived yesterday morning Maureen had gone back to sleep so we chatted for a while about the events of the previous evening.   Chloe mentioned that she sometimes has similar experiences; with Maureen forgetting who she is.  On my return from shopping Chloe mentioned that Maureen had been very upset while I had been out.  She had refused to get dressed because: ‘Paul had taken all her clothes and money.’

Following further conversations with Chloe, our G P yesterday afternoon, and advice from Colleagues on Talking Point I have now come to the conclusion that it is too risky to leave Maureen to her own devices any longer.  It is no longer possible to predict Maureen’s level of confusion and things can change so rapidly.  Maureen’s current presentation adds an air of urgency to the need to review our Care Plan and conduct a Carers’ Assessment.  Unfortunately, there is no news on that front and it gets worse.

I called at the Care Agency yesterday morning and they are in turmoil.  They have lost the contract to deliver care for social services and are the process of handing over to another Agency.  You couldn’t make it up and it seems my patience is to be tested yet again.  In the mean time dementia marches on but I’m still standing – just about!

Dementia: Coaching for Carers: It’s Even More Madness!

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It appears to me that there is a lack of any significant coaching for those who have any caring role where dementia is present.  This lack of coaching in any structured form is apparent for paid carers and those who inherit the role when the condition invades their family.

The normal period of training for paid carers is three days.  Those that we have come into contact with through our Agency mention  three days induction at the Office.  It is my understanding that such basic training concentrates primarily on health and safety matters. Then they shadow an experienced carer for a short period of time before they are let loose with their own round of calls.  I believe that are given a handout or two on how to handle clients who have dementia.

Lets just imagine the scenario during this ‘baptism of fire’.   The ‘fresher carer’ is given a list of calls without scant detail, if any, of the clients they are about to visit.  Calls can be a short as 15 minutes or as long as a couple of hours.  They arrive at the door for the first time, might be able to scan a Care Plan and then it’s all hands to the deck.  Hey all of this reminds me of my days as a Supply Teacher.  That was challenging enough but this little lot has much greater potential to go wrong and you are completely on your own.   There is one word for this if dementia is around madness.

Now moving on to dementia within the family.  It is likely that Care Partners, and possibly other family members, have seen the signs well before diagnosis. They have adapted to their loved ones brain injury and life has gone on.  Following  diagnosis they are faced with a new reality: what had hoped was age related is something far more sinister.  Depending on where they live in the U K there will be various levels of support available to prepare them for their fate.  I have had the good fortune of an Admiral Nurse: a personal coach but they are few and far between.  With only two in this County, Heather is pretty stretched and her availability could never match my need to pick up my new role before it ‘bites me in the bum’.  Yes I get frequent painful reminders that I have not played my cards right here: distress and chaos gives me instant feedback on my shortcomings.  The approach to coaching Care Partners is also madness.

In short, the coaching available for paid carers and care partners is pitiful.  Those with dementia are being sold short. How come that some of the most vulnerable members of society are being cared for by people who have had so little coaching for such a challenging role?  Now I understand why dementia is under the umbrella of Mental Health.  I wonder and who really needs to be assessed?  One of the purposes of  this Blog is to draw attention to this madness: my wife and all those with dementia deserve better than this.