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

General, ,

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: Moderate To Severe?

Mixed Dementia, ,

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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: All The Way

General,

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,

Image result for Young Chauffeur picture

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 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: One Hour To Go

Mixed Dementia,

Image result for Missing My Family Picture

Our chauffeur will be here in an hour but I’m not sure we will make it to see my mum on her 96th birthday. Maureen is very upset and keeps asking me why her family never come to see her?  She has been saying that ‘no one cares about me and no one believes me’.  My words of comfort are falling on deaf ears and she is suggesting that I should go to see my mum by myself.

Maureen understands that my mum and brother are no longer well enough to visit us.  If we make it to Coventry this morning I think it is likely that she will be reluctant to visit others as she says ‘why should I go to see them when they don’t come to see me!’ However, as I know she will enjoy the company of her family I will do my best to persuade her that as we are down that way we may as well call in and see some of those who are finding it difficult to get to Cleethorpes at the moment.

 

10 Lessons from People l/w Dementia

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Henri’s post that follows confirms the point I made yesterday. Those who live with dementia day after day understand the condition!

Ekta's avatarFrom Outside The Mall

I love my job. It fulfills me because I can give and receive in equal measure. In general, people assume that the lives of those living with dementia are somehow less than those who don’t. There are innumerable myths about what dementia is and how it diminishes a person.

I vehemently differ from this opinion. I wanted to list down all the things I have learned, relearned and had reinforced as a direct result of working and loving people living with dementia.

1. Slow down: I do everything fast. Eat. Speak. Walk. Read. Organize. BUT…if I have to effective in my work, I have to slow down to accommodate the needs of where people are at. Not just people l/w dementia, but also their caregivers. It stands me in good stead when I am stuck in a TTC disaster or trying to juggle five tasks at once.

Blog-sunset The sunset from our office…

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Dementia: My Two Top Women

Mixed Dementia,

I know I’m a little late for International Women’s Day but that is deliberate because tomorrow is my mum’s 96th birthday.  This is my musical message to my mum:

Maureen will be accompanying me tomorrow on a trip of over a 100 miles to see the Birthday Girl.  This is my musical message to my dear wife and reflects her approach to living with dementia:

 

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!