Tag Archives: Respite

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: Seeking Person-Centred Respite

Mixed Dementia,

Image result for Person Centred Care Picture

One thing that Maureen craves is to have more time with her family.  When we went to Nottingham last week she was a different person in the company of her brother and sister. There were times when she functioned so well that it was difficult to believe that she had dementia.  It was lovely to see her with familiar faces visiting old haunts from her childhood.

Maureen forgot that we had been with her family almost as soon as we turned the key to enter our home in Cleethorpes.  A few days later she has little idea how long it is since we have seen her brother and sister.  However, when I remind her of the sites we saw in Nottingham the smile on her face is captivating.  The following video uses a bookcase analogy to explain that the emotional memory remains intact even when dementia marches relentlessly on.

We have no immediate family in Cleethorpes so I have plans to make it easier for us to get together.  On Sunday we will travel to the Buddhist Centre in Pocklington to catch up with one of Maureen’s sons on Mother’s Day.  In April we will create a rendezvous in Lincoln to meet up with her other son. I’m hoping that these arrangements will become regular events in a monthly cycle.  I also hope to set in motion regular respite for myself which will also create more family time.

Maureen has never had a positive experience of Care Home based respite: either being bruised and battered or escaping from ‘captivity’. She has also retained the memory that we have ‘tricked her’ into going into Residential Care.  From my point of view telling Love Lies is a daily coping strategy but blatant deceit about Respite Care is a step too far: it will not be repeated.  Therefore, home-based care is the only option at this point in time.

I’m hoping that we will shortly establish a regular pattern of long weekend breaks. Ideally, this will involve me leaving here after Girl Friday arrives and returning before Girl Monday departs. I’m hoping that carer support will be supplemented by family presence while I’m taking a monthly break: a person-centred- approach to preventing Carer Burnout.  If things go according to plan such arrangements for April and May will be in place prior to the Best Interest Meeting on the 6th of April when Maureen’s future care and accommodation will be discussed.

Dementia: What A Bloomer!

Mixed Dementia, ,

I blew it last night to spoil a really positive start to our short- break in Nottingham. My Bloomer was quite simple: I went to bed and left Maureen listening to music with her brother in his kitchen. When I replay my action I just slipped away and went to bed without even saying goodnight. We all paid for my shortsighted behaviour, fueled by tiredness, later.

Maureen’s reaction to being encouraged to sleep in a strange bed with an old geezer was unsurprising. The old fellow with sleep in his eyes was not her husband, nothing and no one could persuade her otherwise. After a considerable disturbance with verbal abuse hurled in all directions she bedded down on a sofa in the safety of the lounge.

The old geezer managed to get her in bed beside him at half two after she emerged from the bathroom. Maureen bedded down beside her husband like a lamb and has slept fitfully since.

We are planning to see Maureen’s sister this morning. This will be a major distraction for us all: visiting someone who lives alone and has serious memory problems of her own. My guess would be that Maureen will be at her compassionate best this morning as she coaches her little sister on how to cope with her own memory issues!

Dementia: Cynophobia -Maureen’s Fear Of Dogs

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Image result for Cynophobia PictureMaureen’s extreme fear of dogs (cynophobia) dominated yesterday afternoon.  It is the result of witnessing a dog bite her mother when she was a little girl and seeing blood flow from a leg wound. She is, therefore, uncomfortable with any dog near her and will cross the road to avoid them.

The dog issue emerged following a conversation with our next door neighbour who we chatted to following a short afternoon walk.  He informed us that a new dog was pending following the death of a previous pet. This conversation led to Maureen thinking that I was going to have a dog and is indicative of how easily she gets confused at the moment.

Once we were in our house, Maureen was convinced there was a dog in our lounge.  She was said their smell had permeated the house and our clothing.  Despite my reassurance to the contrary, this theme continued for some time with Maureen venting her negative feelings about canines. In fact, she said she was moving out because of dogs in the house.

There are no dogs where I’m hoping we will be around noon.  Dan the Man, our chauffeur, will be here this morning to take us to visit Maureen’s brother and his wife.  I have shifted my aspirations from the Buddhist Centre near York as I think Maureen will warm to some family time, rather than being in unknown surroundings.

It will be good to be back in Nottingham visiting old haunts that are familiar to Maureen.  I have a distant memory of being told as a teenager that was where there were lots of beautiful girls: I have been privileged to share my life with one for over a quarter of a century!

 

Dementia: All The Way

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Maureen’s self-image was under further attack yesterday when we visited a relative who has her own troubles at the moment.  Unfortunately, her aunt added further fuel to the fire by failing to pay much attention to how Maureen was feeling.  As we walked home I listened as Maureen told her tale of woe and drove a further nail in her coffin ‘that nobody loves her’.

On our homeward journey, Maureen returned to her her theme that visitors to our home are now few and far between.  Although she forgets when people have been, and understands that family members have busy lives, she has a point. The words of her late daughter are worth recalling here: she often said ‘I have a lot on my plate because I put a lot on my plate’.  Her plate was always full but she was our most regular visitor until her condition weakened her so much that she could no longer make it to Cleethorpes.  Maureen really misses her daughter knowing her action spoke louder than any words could ever do.  Celine and Frank have a few words to say on this front:

It has been another difficult night with Maureen lashing out on several fronts.  Theft has been a constant theme of her discourse with the initial focus being on me stealing her car and warnings about the consequences of taking it again.  At 2.30 this morning I was again the guilty party for failing to prevent thieves from stealing her clothes. It has been one of those occasions when Maureen has an unplayable hand and empathy – even a cup of tea – have made little difference.

It is not easy to be at your best when you are woken in the early hours to find Maureen in full flow; particularly when the changes in presentation are so dramatic that you can never predict what you are going to be up against. As I  tried to stem the tide at 2.30 I wondered where the compassionate woman had gone who a couple of hours earlier had been attending to my needs as if I was a young child who was feeling unwell.

I’m hoping that Dan the Man will help me to change things for the better on Tuesday.  He is booked and I’m hoping a day of peace, love, and tranquility at the Madhyamaka Buddhist Meditation Centre will have a lasting impact on us both.  If the going is really good we might even stay overnight.

Maureen found me in the garden early this morning digging a trench for this season’s kidney beans.  She called out: ‘granddad it is too cold for you to be out there’.  I didn’t mind her confusion as she always knew how much he cherished her and he was from a generation that was never too busy to see his family: he loved her all the way!

 

Dementia: Dan The Man To The Rescue

Mixed Dementia,

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There is little doubt that we have had a narrow escape from the traditional route that Care Partners consider when they are jaded: seeking Respite Care for their loved one.

We both feel rejuvenated from our trip to Coventry on Thursday.  Whenever we think of the smile we put on both my brother’s and mother’s face we know that we got that part of our journey right.  When I think of the route I might have taken to deal with my tiredness I shudder when I remember the result of that path for my brother.

Respite Care led to a disaster for my brother.  His wife was worn out and placed him in Respite Care.  He struggled with his new environment was eventually accused of assaulting a member of staff and was Sectioned and taken to a Mental Health Unit.   They detained him for six months as no Care Home felt able to cope with the resultant challenging behaviour.

My brother has never been a violent man.  Alzheimer’s has clearly changed him and he is now a shadow of his former self.  What on earth they medicated him with defies belief  He didn’t speak on Thursday: words are rare from this lovely gentle man.  He sat in his favourite chair smiling at us on Thursday  – perhaps we were a distant memory in his damaged brain.

My mum’s story is rather different she is in her Care Home by choice  When dad died she couldn’t cope with living alone.  She was adamant she wanted somewhere where there were no men.  Her Care Home is small former farm house where she is well cared for.  However, I often wonder if she has prematurely lost the ability to walk unaided as sitting looking at the centre of the room seems to be her main activity.

When I was jaded earlier in the week I explored Respite Care for Maureen.  I’m so pleased that she declined my attempt to have a break from my role as her Care Partner.  What a mistake that would have been: we would have missed out on bringing such joy to my mother and brother.  I feel rejuvenated that we have found a better way forward: we will remain on this journey together as we vowed when we married.

We’ll be on our travels again next week.  Airport Travel is an excellent local company and they are very attentive to our needs.  I have a couple of ideas where ‘Dan the Man’ could take us to next week: I’ll just have to see where Maureen fancies going on the day!

 

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: Reclaiming Our Lives

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Hey Kate Swaffer, my cyber friend, we still feel young so I hope you don’t mind me using the cover of one of your publications to introduce this post:

Image result for Reclaiming Our Lives from dementia Picture

It was good to have a long chat with our Key Worker yesterday.  He was concerned that arrangements needed to be put in place to ensure my wellbeing.  As he rightly pointed out if I burn-out then matters would be taken out of my hands and Maureen would be taken into care whether I liked it or not.

As anyone who reads this blog would expect it would be unlikely that I would walk down that well-trodden path of seeking respite by placing Maureen in a Care Home.  This route has been far from safe in the past and does not address our aspirations of togetherness.  So I am exploring what all couples do: having a break together.  My initial inquiries have gone well.  One of my sisters has offered open house: although it is a bungalow in her case.  The Madhyamaka Buddhist Centre are also keen to accommodate us in their tranquil surroundings:

Image result for madhyamaka kadampa centre yorkshire

My previous plans to have a regular break by myself at the Centre do not make sense: we are a married couple who enjoy being together.  I’m sure this is only the tip of the iceberg of getting our lives back as we come up with other ideas for mini-holidays and family members invite us to travel around the country to share their company.

‘Ginger’, as Maureen calls him, also encouraged me to put in place structured arrangements for personal support.  I have, consequently, arranged to meet my Admiral Nurse every two weeks.  This Blog will be used as a basis for discussion on how things have gone in the preceding fortnight along with the reflections of carers.  In addition, I will use my Support Worker from the Alzheimer’s Society to chat over my plans ‘as and when’ as they say.

Plans are already in place to make our home safer and more dementia friendly.  Our decorator is imminent to use colour to make it easier for Maureen to find her way around. Our builder is holding off on plans to make our patio safer until the danger of frost has passed.

Spring is in the air and there is plenty to do in our garden.  It would be easy to spend the summer months pottering in the garden and enjoying the tranquility of Cleethorpes.  This would not address aspirations to get our lives back.  However, if we make sensible arrangements to travel further afield who knows where we might get to in the coming months: then we will both feel we are living again!

Dementia: Time For Some Straight Talking

Mixed Dementia, ,

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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: At Risk And Neglected

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I removed Maureen from Ashgrove Care Home this afternoon because she was at risk.  On my arrival, they didn’t know where she was.   It took me a while to discover her in an unused part of the building that is accessible and unsupervised.  She was struggling to get out of an unlit room.

Maureen is a shadow of the woman who went into Ashgrove five days ago.  She is very confused and is trying to relate various incidents that continue to give to give her cause for concern.

It would be unfair to detail my concerns in a blog.  Once the dust has settled I will be formulating an official complaint.  I’m so grateful to Jayne Connery for highlighting that CCTV is needed in all Dementia Care Homes: bring it on!