Category Archives: Uncategorized

Dementia: One Small Step

Uncategorized

Image result for A Small Step For Man Picture

The decision at yesterday’s Best Interest Meeting represents one small step in maintaining Maureen’s wish to remain at home and mine to have a life outside of being her Care Partner.  Our Key Worker is now charged with putting additional care in place so I can have a break one week in four from 10 am on Friday morning until 1 pm the following Monday.  I’m hoping that such arrangements can be put in place as soon as possible.

Unfortunately, the start of the BIM was delayed and did not finish on time.   Following the meeting I declined an opportunity to explore any further issues with the Chair and Decision Maker as I wanted to try to return home on time.  What I hadn’t realised was that my early departure was in vain as  Girl Thursday and our Care Agency already had the matter in hand.  I await the minutes of the meeting with interest and look forward to working with our Key Worker to carry out the spirit and intention of our discussions.

The domestic scene was not very pleasant last night with Mrs Dementia in full flow.  I was told in no uncertain terms that if I trespassed into the room that she was sleeping in she would ‘scream the house down’.  The thought of the peace and solitude of a long weekend break helped me to make it through another long night of Musical Beds!

There’s no peace for the wicked this morning as Maureen tries to make sense of her life.  She has been talking to me for some time about how she thought others people have been controlling her life following her stroke.  As her Care Coordinator once said ‘with vascular dementia, you think that you have got it then it changes’: well I never!

10 Lessons from People l/w Dementia

Uncategorized

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…

View original post 925 more words

Dementia: Twelve Hours To Go

Mixed Dementia, Uncategorized

Image result for 12 Hours to Go Picture

I’m hoping for the green light at 2 pm: news that following assessment, Waltham House (‘A Caring Home’) feel they can meet Maureen’s needs.  The prospect of a week off duty is keeping me going at a time when it would not be sensible to seek further sleep.

Lots of people stepped up to the plate yesterday to support us through a rather bizarre day.  Maureen’s Time Travelling was exceptional with one predominant feature which is now a cause for considerable concern.  The Clinical Psychologist from the Stroke Team warned me that once she began to confuse me with her ex-husband to be very wary.  It is patently obvious from how she is frequently addressing me that time has now arrived: hell has no fury like a woman scorned!

There was one really bizarre episode yesterday when whilst searching for a missing child  Maureen reverted to sign language.  She has often told me how as a teenager she had lunch with relatives who were unable to speak and developed her own unique way of communicating.  Once again I had to call on the support of neighbours who encouraged a really frightened woman to use her voice again.

Hostilities and abuse have resumed shortly after midnight so I have stayed out of the firing line.   I’m sorting out one or two outstanding tasks and making sure Maureen has an overnight bag to take with her later on this morning.

I’m still not sure how we are going to move Maureen from somewhere she doesn’t belong to a place where she is unlikely to want to be.  It’s reassuring that Girl Tuesday will be on hand to ease Maureen’s transition to Waltham House and give me the respite I so dearly need!

Dementia: Action Man Returns

Mixed Dementia, Uncategorized,

Image result for action man picturesMaureen often asks me: ‘what’s the plan Action Man?’  So I took on the mantel yesterday in an attempt to move things in a positive direction.

Once it was confirmed that Maureen had a UTI  I  encouraged the Practice Nurse to outline a formula for recovery:

  • Antibiotics to be taken for a week.
  • Eight glasses of water to be drunk daily.
  • A shower or a bath to be taken three times a week

This formula complemented our early morning pledge:

  • To sleep together in the marital bed at night.

Girl Monday morning also gave me some much-needed coaching:

  • To stop giving Maureen options as she can no longer make choices.

The support we received from professional staff yesterday was of a really high standard.  Early in the morning, a Duty Officer from Social Services contacted me as our Key Worker was not working.  Within a short period of time, she managed to secure and arrange two-hour afternoon carer sits for the remainder of the week.  The added bonus being that this additional support would be with known faces.  Throughout the day other professional staff weighed in with support and advice.

It will take a couple of days before Maureen’s medication starts to kick in.  With luck, things will then move in a positive direction – providing ‘Action Man’ remains well enough to deliver the goods!

Dementia: Feeling Neglected and Stupid

Mixed Dementia, Uncategorized,

Image result for Feeling Neglected and Abused Elderly Woman Picture

Several people heard Maureen giving it to me yesterday and a common response was ‘I can hear what you are up against.’  I appreciate their empathy but they have no idea what it has been like lately: particularly during Storm Maureen. What they also fail to understand is their contribution to Maureen’s distress.  A frequent question from Maureen is where are my family; why don’t they come to see me?  The other burning issue for her is ‘why are people treating me as if I am stupid?’  This is her reading of how most professional staff are dealing with her.  I am at one with her on both issues.

Last night I asked those family members who are in contact to visit more often.  They assured me they will do their best to address Maureen’s feelings of neglect.

On Monday I will request an urgent meeting of the Multi-Disciplinary Team to address our concerns.  I will also suggest that certain professional staff not to darken our door until we have met.

Maureen was in great form at our YouTube Party from 2 until 4 this morning – I wish I could share pictures how much she enjoyed herself – my wife was back for those precious few hours.  She is still here after further sleep three hours later looking forward to an omelette full of good things to drive away any signs of a water infection.

As she has always asserted when she has been in a Care Home ‘those people are behaving as if they are stupid because they are being treated as if they are stupid!’

 

Dementia: Just What The Doctor Ordered

Uncategorized

Image result for madhyamaka kadampa meditation centre

Yesterday, I took the initial steps to establish a regular day off from my role as a Care Partner for my wife. My first move was to explore the possibilities of Maureen going to a local Care Home from 10 am until 5.50 pm on Wednesday’s.  Then I requested that one of our Care Agencies resumed a regular night sit from 10 pm until 7 am.  Following a visit to our other Care Agency, I’m relatively confident that it will be possible for them to fill the gaps.  This will mean that I will be able to be free from my caring role from 9.30 am on Wednesday until noon on the following day. I’m hoping that this regular package of care will be in place by the middle of March.

The prospect of 24 hours every week at Madhyamamka Buddhist Meditation Centre (pictured above) fills me with joy.

A regular break from my caring role is just what the Doctor Ordered.

I couldn’t wish for a better present on my 71st Birthday!

It isn’t important that my other plans for yesterday didn’t really come to fruition.  We had a lovely time with Maureen’s son and that helped to distract her from the bad vibes of the previous day.  There was lots of redirection during the day as we shifted our plans to take account of Maureen’s energy levels.

I think it would be fair to say she was wiped out by the time her son left us to travel back to the West Midlands: she was no longer able to conceal the level of her confusion and fear.  Before she took to the sofa early in the evening she had been shadowing me; in tears constantly telling me how frightened she felt. This is not what the doctor ordered: a significant dip in her condition!

Dementia: Communicating With Carers

General, Uncategorized

Image result for Communicating with carers dementia pictureI have decided to make a copy of my daily posts available to carers on their arrival.  This will give them an inkling of how things have been in the last 24 hours.  I will also suggest how they might approach their time with Maureen. In return, I’m also requesting that they provide a brief summary of how their three hours has gone.

Maureen woke in the early hours of this morning searching for a young boy who she thought had been in bed with her.  At first I though the lad was her son but later she told me it was her grandson.  She searched incessantly for over half an hour and eventually said she must have been dreaming.  I didn’t challenge her reality at any stage of her search and just said I hadn’t seen him.

Once Maureen settled down following her strenuous efforts she was very confused; unsure about where she was and who I was.  An offer of a cup of tea appeared to help matters but she was fast asleep on the sofa by the time I returned to our front room.  These types of incidents are becoming more prevalent and are particularly challenging when you are trying to wake up from a deep sleep.

Our early morning music session on YouTube has brought back a lovely memory.  The first cassette tape Maureen ever bought for me was Working Man:

This song brings back such memories, as Maureen was born in a mining area and tells me she was in trouble as a child for being rude for asking where all the black spots came from on faces of her relatives.

Rita is still singing now and bringing back romantic memories of our early years together.

Update: Maureen woke from a nap at 10 am remonstrating with someone about her finances.  She accused them of stealing all her money and said she ‘hadn’t even got tuppence in her purse’.  It seems it is becoming increasingly difficult for her to distinguish between her dreams and real events.  I will be glad when Girl Every Other Sunday arrives at noon as it is a beautiful day here and I will be able to indulge in some gardening therapy once again.

Dementia: Further Tales of the Unexpected

Mixed Dementia, Uncategorized

Image result for Tales of the unexpected pictureI have to smile when people tell me that you have to take things day by day with dementia.  Those who make such statements have never been on duty 24/7 as they would have seen it’s more likely to be hour by hour.  In fact, things can often change within minutes.

I wish I could have videoed Maureen’s joy yesterday evening when we were listening to Bocelli on YouTube.  She had a constant smile on her face and she applauded every number.  When I sensed she was getting tired and switched off the television she became distressed asking when we were going home.  I explained that it was time to clean our teeth before we retired for the night,  accusations about bringing her here against her will followed with all sorts of recriminations. The looks she gave me would have turned any mortal being to stone so I decided to give her space hoping that sleep would have a curative impact on her mood.

This morning my lovely wife is back singing along to YouTube.  She is probably on her third cup of tea of the morning.  I won’t be taken aback in a few minutes if she tells me she is dying of thirst because she hasn’t had a drink since last night: that’s the nature of her condition.

Maureen is keen to go to Freeman Street Market this morning.  I think she remembers our last visit when stallholders were so supportive as she moved around selecting fruit and vegetables.  She also wants to buy me a present for my birthday which is just over a week away.  Being in Grimsby early on a Saturday morning really works for us as we get our shopping done while most people are still in bed.

Dementia: How To Reduce Accidents

General, Uncategorized

Sensible advice from a G P on YouTube:

This is one of our favourites and always brings a smile to proceedings in the mornings.

Dementia: Talk the Talk and Walk the Walk

Mixed Dementia, Uncategorized,

Image result for walk the walk pictures

I’m often too tired to think straight when it comes to the crunch.  On some days I hardly get any sleep on others the challenges come so thick and fast I don’t know which way to turn.  When Maureen threw out the challenge of being allowed to wander yesterday I immediately ran for the cover of requesting another assessment by Occupational Therapy.  Later in the day after several conversations, a way of preserving Maureen’s independence emerged.

To take a step to release Maureen from her bonds we all need to walk the walk: whenever she wants to go out we accompany her.  The days of restraining her freedom have to be recast as joining her on her right to roam.  This will allow her to fulfill her doctor’s advice to ‘keep on walking’.  When I look back this is a simple solution: rather than calling her back I need to keep my training shoes on and be prepared to step it out whenever my wife beckons.

When I was struggling last week for a ‘one liner’ to address Maureen’s concern about our Wednesday Night Sitter the Local Branch of the  Alzheimer’s Society came to my rescue. They provided sound support again yesterday as did Maureen’s Care Coordinator. From now on we are going to talk to the talk of person-centred support and walk the walk!

Our Care Agency also walked the walk by arranging for Girl Monday to be here today as Girl Wednesday is off sick for the next week.  They understand the need for continuity and pulled out all the stops to get Maureen’s favourite carer here today.

In the evening our Decorator trod an excellent path as he popped in to see us.  It’s fantastic how people call in just when you need (ask) them!  He stuck to our rehearsed script and will return shortly to refresh the kitchen.  Within a few weeks, it will be easier for Maureen to find the downstairs utility room and I wouldn’t be at all surprised if there is sufficient paint left over for our bathroom door to also be painted olive green. While he is working upstairs I’m sure he will suggest that our bedroom door might need refreshing in a suitable colour – I’m sure you follow my drift!

Folk music has been ringing out from YouTube this morning and Maureen is in great voice.  She will be delighted when Girl Monday shows up in a few hours.  I will leave the girls to catch up so that I can progress some important financial business to prepare for what lies ahead on this unforgiving journey.