Tag Archives: Better Practise

Dementia: A Headless Chicken?

minimising distress, ,

Image result for Rushing Around Like Headless Chicken PictureI had a stark reminder early this morning that I’m trying to do too much.  Last night I was so exhausted that I went to bed at half-past eight and left Maureen to her own devices. Five hours or so later I found her sitting on the sofa looking terrified and desperate to relieve herself but no idea where to find the bathroom.   She was so relieved in all sorts of ways to see me, particularly as there had been ‘a strange man in the room again’.

It is painfully obvious that I’m not able to cover all bases at the moment.  I’m trying to solve too many issues and wearing myself out often running around like a headless chicken.  Tiredness kills when you are a driver: it causes distress when you are a Care Partner.

The bookcase in the lounge has now predominantly become Maureen’s space with lots of opportunities for cognitive stimulation.  I need to summon further support from Occupational Therapy to see how the remainder of the house can become more supportive of Maureen’s needs.  However, too many changes could well cause further confusion and a focus on our lounge towards the end of the month would be sensible.

Maureen’s refusal to engage in personal care or take her medication continues to cause concern.   All carers have been alerted to the need to try and get Maureen to shower and change her clothes.  The medication issue is something I will need to discuss with her GP. The progress on these issues will be reviewed with our Key Worker when he visits on Friday.

The ‘headless chicken’ is also painfully aware of the stiffness in his body after a consultation with a Fitness Instructor at  Cleethorpes Leisure Centre yesterday morning.  He has now decided that hydrotherapy is preferable to Tai Chi and will be walking on water later this morning!  Cue Loudon Wainright:

Footnote: Just had a lovely moment after seeing Maureen looking tearful.  When I asked her why she was looking so sad she said:  I’m going to miss you when I go home.’

 

 

Dementia: Good News and Even Better News

Mixed Dementia,

Maureen’s Occupational Therapist phoned with some good news yesterday:

Two weeks to go to until Easy2bathe is here.

Image result for Bathing Aids Picture

An additional stair rail will be fitted within  a month:

Image result for safety stair handrails elderly woman

Then early this morning I got even better news: Maureen has a cold:

Image result for Elderly woman sneezing picture

I heard incessant sneezing from downstairs shortly after midnight and realised Maureen had a cold.  What a relief that there was a probable explanation for her bizarre behaviour last night when she called me all the ‘names under the sun’.

Maureen remained on the attack this morning accusing me of stealing all of her belongings and keeping her here against her will.   Shortly before 5 am I informed Single Point of Access that I was exhausted and will attempt to place Maureen in Respite Care this morning.

Following the Best Interest Meeting, I clarified my options with our Key Worker.  My need for a break was fully explored at the meeting and the only option at the moment is to put Maureen into a Care Home for a short period of time.  The good news is Homefield House appears to be somewhere that could meet Maureen’s needs: the even better news is they have availability.   The one remaining issue is how to get Maureen there with a minimum of distress: thank goodness Girl Wednesday has trodden that path with me on a previous occasion!

Dementia: We’re Struggling This Morning

Mixed Dementia, ,

Image result for It's A Struggle Dementia Picture

We’re struggling this morning or as my dear old mum would say ‘we are in the wars’. Maureen is feeling dizzy and is very confused.  She woke at 3 ‘o’ clock concerned that she was late for an appointment.  Two hours later she was wondering if her dad had gone to join her mum in Nottingham.  Early morning confusion is nothing new but she is also feeling generally unwell and dizzy.  If she doesn’t feel any better when she next wakes I will seek medical advice.

I’m far from in good form myself with pain in my legs and back continuing to interfere with my mobility.  Unfortunately,  Maureen and is picking up on my mood without understanding the reasons for my grumpy demeanor.

We will continue to be in the wars here unless I change my battle plan.  Now the Best Interest decision has been taken and Maureen will be staying at home I have to get my act together.  I need a Simple Plan that is based on a realistic appraisal of our situation.  I have to move out of denial and make realistic decisions that are attainable.

My first priority is to get out of pain by carrying out the exercises the physiotherapist gave me over two months ago.  Once the pain subsides I hope to be able to think clearly about how to simplify our lives and stop wasting time on trying to recreate a former lifestyle. Before I undertake any further activities I need to ask a fundamental question: is this a sensible pursuit at this moment in time?

There are two immediate steps I’m going to take on my Simple Plan.  Firstly, to only post on this Blog on Monday, Wednesday and Friday’s for a while.  Secondly, to review my approach to gardening by buying plants rather than attempting to germinate them from seeds.  Hopefully, as my pain subsides I will make real progress on simplifying our lives.

Update: By 8 ‘o’clock Maureen seems fine as we take breakfast looking out of our patio doors onto our back garden.  We have decided to spend more time in this part of the house looking at our colourful cottage garden rather than the road and bungalows that are the prospect from the front of our house.   As my friend Kelsang Dorde (pictured below) from the Buddhist Meditation Centre at Pocklington would say: it’s a no brainer!

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Dementia: Positive Risk Taking With An Emerald

Mixed Dementia

Early yesterday afternoon Maureen said: ‘you have locked me in again and I will hate you until the day I die’. This was not the first time that she has reacted strongly to finding the key turned in our front door so I promptly opened it and let her go.  I hurriedly got on my bike and followed her at a distance watching her talking to a neighbour who redirected her back home.  On her return, she was a different woman:  I was her friend and she was feeling liberated that she had been out by herself.

Later in the afternoon, I took positive risk taking to another level.  Rather than follow her as soon as she ‘escaped’ I gave her 15 minutes as I nervously sat on the edge of my seat counting the seconds.  As I got on my bike she waved to me as she turned into a nearby close.  I followed her at a distance silently encouraging her as she found her way home.  When we caught up with each other on our front drive I hugged her with congratulatory tears in my eyes – she thanked me for being such a good man.  She told me that she had waived to a man with white hair because it might just have been me!

I haven’t gone native or ‘lost it’ in my approach to Maureen’s liberation.  It is something I  have discussed extensively with professional staff and am using my judgement as I open the doors to freedom for my wife.

I also raised another important issue with my Admiral Nurse when we met yesterday.  I wanted to place Maureen within Teepa Snow’s GEMS model.  I eventually concluded that if she was anything she was Emerald:

‘Emerald ~ Green and On the Go With a Purpose ~ Naturally Flawed

  • Sees self as able and independent, with limited awareness of changes in ability
  • Lives in moments of clarity mixed with periods of loss in logic/reason/perspective
  • Understanding and use of language change: vague words and many repeats
  • Cues and support help when getting to/from places and doing daily routines
  • Awareness of time, place, and situation will not always match current reality
  • Strong emotional reactions are triggered by fears, desires, or unmet needs
  • Needs to know what comes next: seeks guidance and assistance to fill the day

I am flawed; it is part of being a natural emerald. I tend to be focused on what I want or need in this moment and may not be aware of my own safety or changing abilities. I can chat socially, but I typically miss one out of every four words and cannot accurately follow the meaning of longer conversations. I won’t remember the details of our time together, but I will remember how your body language and tone of voice made me feel. I may hide or misplace things and believe someone has taken them. My brain will make up information to fill in the blanks, which makes you think I am lying. If you try to correct me or argue, I may become resentful or suspicious of you. I am not always rational, but I don’t want to be made to feel incompetent. My brain plays tricks on me, taking me to different times and places in my life. When I am struggling, I may tell you, “I want to go home.” To provide the help and assistance I need, you must go with my flow, use a positive, partnered approach, and modify my environment’.

Teepa is an amazing woman who encourages Care Partners to focus on capabilities and I’m sure that with careful positive risk taking Maureen will continue to shine!

Dementia: I’m Counting My Blessings

Mixed Dementia,

One week has passed since the Best Interest Meeting that considered Maureen’s future care and accommodation.  The decision for Maureen to stay at home was one that I welcomed and I doubt there was any dissension in the room.  Unfortunately, it is no simple matter to secure wall to wall care for 72 hours to give me long weekend breaks once a month.  I have now accepted that my plans to have three nights away in a weeks time are not going to happen so I will be seeking additional carer sits with known faces from next week.

Sorting out my long weekends is going to take some time but there have been some really positive developments this week:

  • Occupational Therapy involvement is going to be ongoing with a hand stair rail and aids to make bathing easier already on order.
  • My meeting with a Carer Support worker went well yesterday.  This emotional and practical support will now be ongoing.
  • This morning will be the first of fortnightly meetings with my Admiral Nurse to review how things have gone and plan ahead.

There is no doubt that our Multi-Disciplinary Team has been very thorough in attempting to provide support that is appropriate to Maureen’s current presentation.   We are very fortunate to live in an area of the country where there are genuine attempts to support carers and their loved ones.  Once again I count my blessings over our decision to move to North East Lincolnshire!

Dementia: Moving Forward

Mixed Dementia

This week is an opportunity to move forward following Thursday’s  Best Interest Meeting with three meetings already scheduled:

Related imageTuesday:  Maureen’s Care Coordinator is here with an Occupational Therapist to give us advice on how to make our home a safer and more stimulating environment.

Wednesday:  I have a meeting with a Carer Support Worker to explore how she might be able to make my load a little lighter.

Thursday: I have a meeting with my Admiral Nurse as the start of a schedule of fortnightly meetings to review my role as Maureen’s Care Partner.  These meetings will offer the support/supervision that I have been seeking.

It also seems likely that I will need to meet our Key Worker at some time during the week for a progress report on the arrangements for Maureen’s care during the first of my long weekend breaks.  The thought of a break in a couple of weeks will hopefully keep me going as Maureen’s presentation becomes even more challenging by the day!

Dementia: It’s Working

Mixed Dementia,

Image result for It's Working Dementia Picture

I’m now sleeping upstairs at night following the removal of the single bed from our lounge.  Maureen still plays Musical Beds generally spending some of her time in the marital bedroom after an earlier stint on the sofa.  I initially take to the spare room and only join her following invitation.

There was a real bonus yesterday when Maureen told me she ‘had a young man in her bed on Thursday morning’.  I thought it would have been reckless to have mentioned this at the Best Interest Meeting a few hours later as  I didn’t want to risk any further ideas about the need for a Capacity Assessment on this front.

It’s clearly Maureen’s emotional memory that allows her to recall the events of  Thursday morning.  To be called a young man at the age of 71 is rather reassuring!

Dementia: It’s Good News Week

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  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

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: 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.