Dementia: Happy Anniversary

Mixed Dementia

Care Partner MDToday is our wedding anniversary: it’s 19 years since we tied the knot.

From our perspective Wedding Day by the BeeGees says it all:

However, Maureen’s viral infection is still in full flow and impacting upon her presentation.    She ‘wanted to go home’ yesterday and it took me over two hours to shepherd her back home.  There were also several times during the day when her behaviour was either very challenging or puzzling.   Her confusion about how to use the toilet has surfaced again and will have to be addressed if it continues.  It was worrying that the bathroom floor was extremely wet as I turned in for the night.

The daily challenges continue to arise but that does not lessen my resolve to live together as husband and wife.  Our newly extended house should be the only Care Home we will ever need.

On our Special Day, our approach will be no different to any other year.  We don’t  give each other gifts: I have always said Maureen’s presence is my present!

Update at 3.15am:

I drafted the above before turning in last night.  Maureen has been awake for the last half an hour or so.  She is looking after four children: talking to them incessantly as they follow her around our house.  She has just taken them all to the toilet.  It will be interesting to see the state of the floor in the utility room when they have finished.

I hope I can find where have I saved that article on hallucinations and delirium!

 

Dementia: Preventing Discouragement

Mixed Dementia

Maureen’s infection is continuing to impact upon her presentation.  She sang beautifully throughout the morning and afternoon yesterday as I put some of her favourite LP’s on the record deck.  Unfortunately, when she awoke from our afternoon nap abject confusion led to a difficult early evening.

Our standoff in the street must be a familiar scene to neighbours by now, as negotiations take place on all sorts of fronts.  Yesterday, the issue was whether to walk to the local shops or use the car.  Eventually, we did neither and the suggestion of a cup of tea brought us in from the street.  I then managed to cool things down further with potato wedges and scrambled eggs.

We were both in the same bed by 8 ‘o’ clock last night, worn out after the events of the day. This morning Maureen’s infection is dreadful.  However, this is not a time to be discouraged: this is a lesson in patience!

 

Dementia: ‘Coming In From The Cold’

Mixed Dementia,

Reggae has always had great resonance for us.  The words of the above number have great significance in our household this morning:

  • Maureen’s cold broke yesterday.  I have never been so pleased in my life to see a loved on coughing and sneezing: at last, there was an explanation for her presentation – infection!
  • I had a long conversation with the Specialist Doctor who prescribed Trazodone yesterday and she understands why I haven’t opened the bottle.  We are very fortunate that staff within NAViGO treat the person rather than the disease.

Maureen’s Tea Boy has additional duties this morning: ensuring tissues are at hand!

 

Dementia: Medication Is Not The Solution

Mixed Dementia, Uncategorized

Posted at 3 am:

Image result for Medication is not the answer

My early morning greeting from Maureen was not easy to handle.  She woke after we had both had a couple of hours rest wanting to go to the toilet.  I tried to direct her without success and received a barrage of complaints and insults: ‘there isn’t a ladies, the floor will be covered in pee, there is nowhere to sit down.’  Half an hour later I eased her upstairs and the deed was done – although she told me she had used the floor!

Once relief had taken place where to sleep became the next issue.  The familiar complaints of ‘everywhere smells, I wouldn’t get into bed with you and animals have been in the bed’ was played out; along with insults hurled in my direction.

Trazodone sits in the cupboard without an instruction leaflet and unopened.  The message has been that ‘it will help you’.  My research along with comments from many people who follow this blog suggest otherwise: Maureen doesn’t need a chemical cosh!

The Best Interest Meeting is scheduled for early November.  Such a prospect is no help to me in the early hours after World Alzheimer’s Day.  I’m hoping that this morning’s call to Single Point of Access will result in an immediate gathering where adequate care and coaching will be put in place.  Perhaps that would be an appropriate moment to hand back the bottle of Trazodone!

Update at 6.15 am:

Good News:  I managed to get further sleep and Maureen has a cold:  no wonder she was grotty when she woke earlier!

Bad News:  A  few days delay in the completion of our renovations due to an understandable mistake by a plumber yesterday.

 

Alzheimer’s . . . from the Daughter / Dad Perspective

Uncategorized

Raw honesty and clarity on World Alzheimer’s Day.

A Bit of Brian's Brilliance's avatarA Bit of Brian's Brilliance

In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole.  I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
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Daughter of Dad with Alzheimer’s, from HER Perspective

Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease…

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Dementia: 11 Things To Start Doing For Yourself

Mixed Dementia, ,

A helpful creed to live by from the Alzheimer’s Care Resource Centre:

I’m am breathing properly, softly and deeply as I try to figure out where the hosepipe issue has come from.  For the second morning running, Maureen has been scared that ‘they are going to turn the hosepipe on her’.  I can understand that she may have been dreaming that she had left potatoes cooking when she awoke at 3.30 am this morning but where have the fears about the hosepipe come from?

Sorting out my breathing is relatively simple.  The test will be whether I can embed the other ten things in the above list within my approach to life!

 

Dementia: Time For Change

Mixed Dementia,

Image result for Time For Change Picture

George Rook made a good point in his <BLOG> yesterday:  there need to be some radical changes in how we approach dementia in this country.  There is only one thing I would add to George’s excellent post: DEMENTIA IS NOT A MENTAL HEALTH CONDITION!  

Dementia is concerned with changes in the brain it is not caused by what is going on in the mind.  In my opinion, the sooner we remove dementia from under the umbrella of mental health, with its predominantly medical model the better!

We had a tough day here yesterday with two electricians with us all day.  I breathed a sigh of relief to hear that rewiring is not needed but more work is needed before we are safe and sound.  Maureen found it difficult to understand why power was being switched on and off throughout the day.  Her response varied from; interacting with ‘the men’, to wanting to go back to the peace and quiet of her ‘own home’.  Her performance in the evening was amazing as she sang and danced to an Andre Rieu concert on YouTube for over an hour!

 

Dementia: Give Us Just A Little More Time

Mixed Dementia

 

I have been pressing for a review of Maureen presentation.  This has resulted in the suggestions that a Best Interest Meeting is the way forward.  I’m not sure that a BIM is needed after how she presented yesterday:

Maureen’s presentation will always be a reaction to her environment and how she is being treated.  If living on a building site for three months hadn’t changed her presentation there would be real cause for concern!  Who doesn’t want to get away from it all when your house has been turned upside-down and you no longer know where anything is?

What really needs to be resolved at the moment is:

  • Clarity over Maureen’s diagnosis: is it predominantly Alzheimer’s or Vascular Dementia?
  • Consensus on where to place Maureen on Teepa Snow’s CEMS Model and the attendant approach to support.
  • Adequate support to me as Maureen’s Care Partner.
  • A reinstatement of the role of a Care Coordinator.

Maureen was a revelation in the company of her family yesterday.  Once our renovations have been completed and there is adequate room for her relatives to stay I am convinced we will see a very different Maureen.

Now here’s a thing: earlier this morning I reminded Maureen that four of her grandchildren had been here on Monday – she had forgotten.  As I’m about to post she has just said ‘it was a nice day yesterday’ going on to explain how much better it was to be out in the fresh air rather than sitting in the house when visitors are here.  Such comments give me hope that neuroplasticity is fact rather than fiction!

 

Dementia: ‘They All Know Us’

Mixed Dementia, ,

Image result for Citizen Khan PictureI often adopt a Citizen Khan approach to our life: frequently telling Maureen ‘they all know us’.  Once again the locals came to my rescue yesterday afternoon when Maureen gave me the slip.  It was another one of those farcical events that can leave you bent over with laughter when you look back.

I had been having a Sunday afternoon snooze and woke up to find Maureen had done a runner.  When I made it to the front door she was walking by and I hailed her with ‘hello Blondie’  she responded with ‘I was trying to remember where you lived’ and walked on.  I stopped to talk to a neighbour as Maureen started on a familiar route around a local Court.  Then I walked on to catch her as she completed her circuit but no Maureen. I checked with my neighbour but she had not passed him as he tended his front garden so I retraced my steps thinking she may have gone into someone’s garden.  A few minutes later I gathered what had happened when my neighbour said she was in a Close opposite our house.

Maureen had obviously doubled back and that was why she had not met me at the end of the Court.  Then she had gone back towards our house and ended up in the Close.  When I found her she was on the arm of a woman who lives in a bungalow opposite our house.  She has been kind enough to let us park our car on her drive while skips have taken up our normal parking space.  To show our thanks for her kindness I invited our neighbour in for a cup of tea and she stayed and chatted for a while.

It is so helpful that our neighbours know us and are aware of Maureen’s condition.   I always know if she slips out some kind soul will be on her case within minutes to keep her safe and sound as they usher her back home.

Dementia: Positive Risk Taking

Mixed Dementia

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After a great deal of thought, and frequently changing my mind, I have decided to go for it this morning: 

When I first heard that two family members and their four children wanted to visit today I was aghast.  My first thought was didn’t they understand?   How could anyone conceive that someone with severe dementia could cope with such a gathering?  So I suggested breaking up the visiting party and leaving some of them in waiting until we saw how it was going.  This morning – I think – I’m going to leave it to their discretion as this will mean I have the time to clear up some important outstanding business

If the visiting party arrive before one ‘o’ clock I will hopefully have time to resolve some critical issues for the forthcoming week.  Some of them involve complex matters about my relationship with certain organisations.  I’m not a believer in doing dirty washing in public – unless I have to – and I’m hoping that a little bit of positive risk-taking today will be good for all concerned.

Maureen’s early morning response to the news that visitors are coming today is ‘I don’t know what they look like’.  Showing her photographs and talking about her grandchildren yesterday has long since faded from her memory.  Her current focus is on trying to solve a support issue and lambasting me with a comment that the black bra (which is, in fact, a belt) belongs to my girlfriend.  It’s getting hot here now as she ups the anti shouting out that ‘it’s hers, not mine and it stinks!’  The bra has now been thrown into the wash basket and Maureen is shouting that ‘fat arse has had all of her underwear’.

A cup of tea and a bit of humble pie is my only hope: at the right time of course!