Tag Archives: Tiredness

Dementia: Seeking Immediate Respite

Mixed Dementia,

Image result for Preventing Care Burnout Picture

This is a live feed at 4 am as Maureen onslaught of the last few days shows no sign of running out of steam.  She ‘doesn’t want to be here has no trust in me’ and continues to list my shortcomings.  I am exhausted and there are questions about my ability to keep her safe and protect my own welfare: something has to give and today may be a good time to seek a temporary resolution.

I am reluctant to give detail after previous false starts but I think I have found a Care Home that can meet Maureen’s needs.  The problems associated with getting her there could be resolved today with the support of one of her sons.  He will be arriving with his family later this morning and it is possible that we will be able to move Maureen into a place where her needs can be met with a minimum of distress.

 

Dementia: Further Problems With My DNA

Mixed Dementia,

I’m really struggling with my DNA this morning.  Maureen has returned to her theme that she doesn’t need carers particularly those who are not of her generation.  This is the same woman who told her Care Coordinator yesterday that everything was hunky dory.

Maureen launched into this theme at 4 am when I was hoping for further shuteye.  I know I should have distracted and redirected but you can’t always stick to the straight and narrow.  However,  my retort of ‘put up or shut up: even do something about it’ didn’t go down well.

As I constructed this post a Billy Bragg number came to mind:

Billy’s assertion ‘there are two sides to every story’ is very pertinent.  I often pose this to members of our Multi-Disciplinary Team. What they hear is Maureen giving them a version of how good things are. They never see  Mrs Dementia in full flow: distraught that she can no longer be left to her own devices.

At 4 am in the morning it is easy to forget the advice given to me in the early days by Iwona our local pharmacist: Do Not Absorb. – something to remember when you are too tired to distract and redirect.  All the staff at our local Lloyds Pharmacy deserve a medal for the ongoing support they so willingly provide to us – I think it’s time to drop them in another packet of Rich Tea biscuits!

Dementia: A Reality Check

Mixed Dementia, ,

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I had a real warning yesterday – a distinct reality check. Maureen was distressed throughout the day: initially worrying she was being discriminated against, then making me aware of the consequences of stealing her car, before accusing me of negligence in my role as Manager of this Care Home.  Her offensive continued throughout the day at a time when I was struggling to stand because of severe pain in my left leg.

Having bilateral hip replacement has solved one set of problems but it has created others. I am no longer troubled by pain in my hip joints but there are days when I have aches and pains in my legs that I could do without. It is clear that sleep deprivation along with a poor sleep pattern is not giving my body a chance to recover from the daily pressures of being a Care Partner to someone who has moderate to severe dementia.

Maureen was on the attack again early this morning accusing me of feigning injury to gain her attention.  Ten minutes later she has cooled down and was pleased that my TENS Machine along with a turmeric based drink may have eased my troubled legs.  I hope she remains in good form as our Advocates for the Best Interest Meeting will be here in a few hours.

Two really positives from yesterday as opportunities for Carer Respite appear to be falling into place.  Firstly, in the morning I returned to Waltham House Care Home to explore a number of options.  I’m optimistic that we have thought through a way of Maureen sampling what is on offer there without causing further distress.   Secondly, in the evening I had a really supportive conversation with Maureen’s son, who despite a busy schedule is keen to help to keep his mum remain in her own home when I take a break.

The BIM is bound to focus the need to build Carer Respite into our Care Plan.  I am optimistic that plans are emerging that will preserve person-centred care for Maureen and ensure my role as her Care Partner is sustainable.  However,  the progressive nature of her condition means that our plans will always need to be flexible to take account of the dynamic nature of dementia.

Dementia: Moderate To Severe?

Mixed Dementia, ,

Image result for dementia picture

In my opinion, there is a need to review Maureen’s current presentation and her diagnosis of moderate to severe dementia. The last time any review took place was eight months ago. In the last few weeks, there have been significant changes in her presentation along with a further decline in her cognitive and functional ability.

I am meeting my Admiral Nurse on Thursday and will request an assessment by Occupational Therapy from the Memory Service.  They will be able to advise me on suitable adaptations for our home and how to continue to be a supportive Care Partner

One thing I am clear about is how Maureen thrived on Thursday during our ‘Away Day’ in Coventry.  She was in such good form in my brother’s Nursing Home that the audience grew as news of her dancing spread.  Dan the Man will be here again on Tuesday and we’ll be off again for another break from Cleethorpes.  The following week offers even better opportunities for taking ‘Maureen to the Mountain’ with an important 18th birthday party and Mother’s Day.

I don’t see any rush for the forthcoming Best Interest Meeting and I’m hoping that those who have to be wary of the Mental Capacity Act will have the grace to cut us a little further slack so we can add a little more normality into our lives.

Maureen is always keen for ‘Ginger’ to come to see us and I sincerely hope that in relation to the BIM our Key Worker is the only person who visits our home in the next two weeks!

 

Dementia: A Good Result

Mixed Dementia,

Image result for A Good Result Picture

Maureen was in great form throughout our trip to Coventry yesterday.  She was at her compassionate best as we entertained both my brother and mother.

My brother and mother may not have known who we were but it was obvious they enjoyed our company.  It is such a shame that safeguarding prevents me from sharing the joy on my brothers face as we danced holding his hand as he sat in his favourite spot in the residents dining room.  Mum is certainly keeping my big brother and me safe 70 years ago in the photograph.  She was lifted so much by our antics yesterday that one staff member suggested a regular booking: hearing her sing along to Nat King Cole; fluttering her eyes to Unforgettable was heartening.

Yesterday gave me a stark reminder of Maureen’s basic needs if she ever goes into  Respite: just what my mum enjoys a Women Only  Care Home.  One thing my mum and Maureen have in common is they are both frightened of men.

On our homeward journey were both very tired but pleased with what we had achieved during our visit to Coventry.  We had even managed a late lunch with our granddaughter and her dad.

I’m not sure we will attempt a day trip again as an overnight stay would have given us an opportunity to catch up with more relatives.  That is a minor lesson from yesterday compared to reminding myself of Maureen’s fear of men!

Dementia: A Natural Break Beckons

Mixed Dementia, ,

Image result for A Natural Breakfrom Dementia Picture

This morning I have an appointment with my Counsellor – the very man who suggested I should consider blogging.  He helped me to think my way out of depression and see that medication was not the solution for recurring low mood.  Once Maureen was diagnosed with dementia he suggested my mission was to minimise distress.

Maureen didn’t want to go on a little holiday yesterday, rejecting out of hand any ideas about a short break.  No matter how we tried she saw no point in going anywhere as she ‘liked being in her own home’.  I kept in touch with the manager of  Waltham House throughout the day and was reassured by her empathy for my predicament.

The consistent advice from professional staff yesterday was to work within my usual remit of minimising distress.  It soon became obvious that Maureen could see no valid reason for leaving her home and going anywhere else.  No matter how we dressed it up: ‘the lady was not for turning’.  Today brings a new beginning, unfortunately, it is cold and raining heavily so my chances of getting Maureen out of the front door are slim, to say the least!

There is another possibility for a short break for both of us.  My mother is 96 on Thursday and Maureen is keen to join me on a trip to see the Birthday Girl.   Family members are already offering to put us up for a  night or two so we don’t have to travel over 200 miles in one day.  Such a natural break is a phone call away and our chauffeur will be here tomorrow morning.

Our professional support team has always alerted me to the dangers of Burnout: there is a constant message to look after yourself.  Respite care for Maureen is usually seen as the solution when I begin to feel jaded.  I understand that a rolling programme of regular breaks is a sensible arrangement.  I am optimistic that Waltham House is only an assessment away from filling such a gap in our Care Plan.  However, from past experience, I can safely predict that Maureen will be distressed by such arrangements.  To paraphrase her words ‘I’m ready to give up whenever you have tricked me into going in a Care Home’.

It’s fortunate I’m seeing my Counsellor this morning as I’m sure I will emerge from our session with a pragmatic way forward.  It is so helpful that his initial training was as a Mental Health Nurse working in a Dementia Unit.

I hate to think what readers of this Blog ‘who live dementia’ would have thought if I had deliberately ‘tricked Maureen’ into not seeing the Birthday Girl tomorrow.  It could even be that we go today as Maureen never knows what day it is and could well think we will be heading south this morning!

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Time For Some Straight Talking

Mixed Dementia, ,

Image result for Time for straight talking graphic

This is no time for beating around the bush: Maureen is on a downward spiral.  No one knows what is behind the increased level of confusion and the attendant ongoing challenges she is presenting to me and carers   Anyone who suggests it changes from day to day should witness this: it’s frequently within minutes that our status changes from friend to foe.  What I can say without fear of contradiction is that I’m very tired and that a reappraisal of our situation is required.  That is why I am requesting an urgent meeting of the Multi-Disciplinary Team.

I anyone else tells me I’m ‘doing a good job’ or suggests the solution is to ‘distract and redirect’ my response is likely to be in Anglo-Saxon.  As much as I appreciate compliments it is a time when action is needed rather than words.  We need to review whether the focus of professional input along with our Care Plan reflects where Maureen is in the progression of her condition!

From immediate effect, anyone who has or might be carrying an infection will not cross our front door. I took a chance last week with two individuals who may have brought the lurgy into this household and Maureen now has a heavy cold!

We would not cope without this guy at the moment:

It’s 4.30 in the morning and ‘Rudolph The Red Nose Reindeer’ is in great voice.  Don’t worry my cyber friend ‘Amazing Susan Macaulay‘ (pictured below):Image result for Susan Macaulay Amazing

I have videoed my ‘Singer Lady’ but as you know safeguarding issues prevent me from sharing her lovely voice on here.  If only you could see her joy when the Three Tenors are on it would bring tears to your eyes:

She is singing in Italian at the moment: it has to be‘Incredible Maureen’ from now on!

Dementia: The Storm Rages On

Mixed Dementia, ,

I thought I had weathered the worst of ‘Storm Maureen’ by 2.30 am when Maureen had dropped off to sleep.  Music had quelled the initial onslaught with songs from Peter, Paul, and Mary on YouTube:

The focus of the storm changed from thieves stealing Maureen’s car to searching for her missing mum when she woke around 3 am.  Two hours later she was ranting over the need to move out as everyone was ignoring her here and the house was too cold.

I’ve decided to move out myself this morning to Cleethorpes Leisure Centre, as I need to rejuvenate myself in the Spa and the Sauna.  It’s fortunate that Girl Friday is on duty again this morning: Maureen desperately needs one of her Pamper Days.

It wouldn’t need much thought to work out which song would be on my Good Music page today.

Update: On taking Maureen her first cup of the day at 7.45 am she has a simple question: ‘where is this big family of mine?’  She has forgotten her son was here two days ago but she knows that her visitors are now few and far between – a familiar tale for those who have dementia!

Dementia: A Silly Mistake

Mixed Dementia,

Image result for A silly mistake pictureI made a silly mistake yesterday and paid a heavy price. Maureen’s presentation in the afternoon and early evening became as challenging as I have ever experienced.  I should have spotted the signals early on when she just couldn’t settle down and said she didn’t know what to do.  Unfortunately, I ignored her as I listened to Coventry City’s attempt to prevent the inevitable relegation to Division Two.  Then once we were 3-1 down the battle here began to intensify until it became almost unplayable as the evening progressed.

Maureen’s first solution was to try to escape from her confusion and a neighbour brought her back as she strayed onto his drive.  Then she was trying to find non-existent children that had left their belongings here earlier in the day.  We even called in next door to see if the missing charges had found their way there: despite being aware that their offspring had long left home.  On our return home I examined what Maureen was anxious to return a blanket wrapped around a small tray, the contents of a large box of tissues, and a shoe.

Confusion and abusive accusations then reigned for a couple of hours as Maureen hurled abuse at her despicable husband.  Most of what was said had no significance or relevance to our lives together – Maureen appeared to be time-travelling through deeply held resentment from a previous life.  During a break in hostilities, I phoned a family member to suggest that a call might help to ground his mother in a more supportive reality.   However, exhaustion had taken over as Maureen had taken to the sofa and was fast asleep when I returned downstairs.

One further lesson from early this morning is to ensure that Maureen never sleeps in total darkness.  She awoke this morning terrified that shapes were animals that would do her harm.

If things go according to plan today Maureen will be with Girl Every Other Sunday from noon until two and I will bask in the Spa at the Leisure Centre.  A siesta in the afternoon should help us both.  The most important thing today, however, is to avoid the silly mistakes of yesterday!