Tag Archives: Distress

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: Too Much Pressure

Mixed Dementia, ,

Posted at 3.30 am

Today’s music is particularly pertinent:

Our house is now a complete mess: nothing like the order that Maureen has lived in all of her life.  We emptied our dining room so the walls and ceiling could be reskimmed yesterday evening.  The bookcase that Maureen has claimed as her own has been emptied:  some of her most precious belongings are in boxes all over the house.  Little wonder she doesn’t know where she is and wants to run away: she is completely lost in her surroundings.

The dining room now needs to be left to sweat – dry out.  Chaos will reign in our household for the next few days.  This will be intensified on Monday when plumbers will be here to begin kitting out our new shower room.

In two weeks time, the pressure will be off and a semblance of normality will return to our household.  We will then welcome visitors with open arms and be able to offer them somewhere to stay as the Sun Room doubles as a self-contained flatlet!

Dementia: Take A Breath With Teepa

Mixed Dementia, ,

The other day a relative asked me for some advice the on how to provide support that would be helpful to Maureen during his visits – so I pointed him in the direction of Teepa Snow:

I have had to follow Teepa’s advice many times during the last 24 hours.  I am the only person who has been able to persuade Maureen to take a bath or a shower in the last couple of months.  There was a heavy price to pay for my success yesterday as Maureen struggled to accept that she had chosen to spend the day in her dressing gown without anything underneath.

Early this morning, things were very challenging with Maureen becoming hostile as she tried to resolve a clothing crisis.  She became rather uncomfortable when she put the leg of her pants around her waist and began lashing out at me in frustration.  Help arrived in the form of Night Rovers as things had cooled down.  By the time that the ladies from arrived Maureen had pants. PJ bottoms and a T Shirt on for the first time since her Sunday morning bath.

One of the problems at the moment is that Maureen is finding it difficult to hear or understand what I believe to be straightforward instructions.  Taking deep breaths along with giving simple instructions has to become automatic from now on.

Slightly more than deep breathing might be needed this morning as all windows are being replaced at the front of the house. At the same time, our builders are into the final week of the Sun Room.  It’s another one of those occasions when there is no gain without pain.  Once our window fitter is done, Maureen will no longer be looking through leaded windows which remind her of a prison cell.  The Sun Room will mean that Maureen’s Care Home is fit for purpose at long last!

Dementia: Don’t Grieve Conceive!

Mixed Dementia, Uncategorized, , ,

Posted at 2.00 am:

 

Image result for Don't Grieve Conceive picture

I have just phoned the Konar Suite to speak to a Nurse to check whether my support to Maureen has been appropriate.  She was in floods of tears a short while ago because ‘they had found a dead baby’.  This was the second time this week that she has been overwhelmed with this thought.

When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’.  Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming.  She didn’t know that Maureen’s second born had died at three months when she was twenty-one.  I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.

Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7.  This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house.  She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution.   Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a  replacement for a young child who never made it to his first birthday.

If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life.  She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!

Footnote:  Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!

 

 

Dementia: Is Dr Dan The Man?

Mixed Dementia, , ,

Some of my cyber friends have pointed me in the direction of Dr Dan Nightingale.   From my limited understanding of his work, it appears there may be an alternative to Trazodone: the medical solution to Maureen’s presentation.

Maureen’s behaviour became extremely challenging yesterday afternoon when she took off saying ‘she didn’t like it here’.  I followed her around the local area listening to a familiar tale of me ‘robbing, deceiving and abusing her’.  At one stage she confronted another woman who I had never seen before about her involvement in the affair.  The positive about this incident was that she got into the car after reprimanding this poor woman.  An hour later, it took the involvement of two support workers from the Home Treatment Team to persuade her to leave the car and enter ‘her house that I had stolen’.

Maureen was all sweetness and light when the HTT was here.  Following their departure, she sang along to YouTube beautifully for a while before becoming distressed about a strange man in the house.  My attempts to reassure her that she was safe had no impact so I gave her a cup of tea induced with a small amount of lorazepam.  I managed to encourage her to ‘rest her eyes’ but unfortunately by midnight she was on the attack again with a short spell of vindictiveness and sarcasm.

It is not easy to switch off and go back to sleep after seeing your wife out of control and looking menacing with a cheeses board in hand.  Therefore  I’m drafting this post as one ‘o’ clock appears on my VDU.

I’m hoping that Dr Dan will be the man to help Maureen never forget who I am and stop accusing me of being responsible for events in her life that have no connection with me.

I’m also hoping that my Buddhist teachers will help me to stop self-cherishing and recognise the spiritual lessons from this journey:

What a shame I can’t make the opening session of this Term’s meditation classes in Grimsby tonight!

Update at 4 ‘o’ clock:  Maureen wants ‘Mr Fish’ our Key Worker here to lodge a complaint that she hasn’t any underwear and the toilets are filthy.   Having listened to her diatribe for about half an hour I contacted Single Point of Access so that she could request a visit.  She wouldn’t take the phone to speak to them directly so I held it close enough for them to grasp her reality about ‘the state of play in this hospital’.   I expect a call from ‘Mr Fish’ shortly after he is on duty this morning.  I’m pretty sure he will press ahead with a Best Interest meeting so we can all get round the table to discuss how best to respond to Maureen’s fluctuating presentation.

Further, Update at 6 ‘o’clock: I have just heard a very articulate presentation from Maureen on why she no longer needs to be in this ‘Care Home’.  She makes the point that there is no incentive for them to send her home.  From her perspective, her parents are too intimidated to assert that she is well enough to go home.  She says Care Homes are only interested in making money and will keep her here forever.  From many of the things that she said I thought she had been in touch with Kate Swaffer to confirm her thesis on ‘Prescribed Disengagement’.  I just have a feeling that we might be able to harness Maureen’s fighting spirit to good effect and ‘rementia’ offers a way out of this very dark Tunnel.  Only time will tell if Dr Dan really is the Man!

Dementia: Working Overtime

Mixed Dementia,

Image result for working Overtime pictureOur builders informed me yesterday evening that they are going to work the next two weekends to finish Val’s Room ahead of schedule.  Their support to us during the nine weeks they have been on site has been exceptional and this latest move is typical of a dementia friendly business.  Maureen asks every day ‘when that man is going to clear his mess up’ but as soon as she sees him and his colleague her face lights up because she knows her interaction with them is alway’s positive.  I’m sure we will both miss them when their work is done!

I’m working both overtime and night-shift at the moment.  Maureen caught me out the other day: quite rightly pointing out that certain areas of the house were far from clean.  I hastily tidied up the bathroom and the utility room before she would use the facilities.  Then she told me that I ‘shouldn’t have to be doing such work as it was the responsibility of the cleaning ladies’.  She is right and it is time to employ someone for a few hours a week to help keep the place clean.

Monday’s night-shift was long and arduous.  Maureen was armed with a small metal table when I returned from one of my frequent trips to the bathroom.  It would have come flying in my direction if I hadn’t whistled as I entered the lounge.  My call sign saves my bacon on many an occasion: thank goodness my dad taught me how to whistle. How ironic that a few hours later Maureen thought I was her dad and asked me questions about his parents that I had to bluff on, as I had never met them!

Some of my cyber contacts have suggested that coaching is essential as Maureen’s presentation becomes more complex.   Although they often comment on my blog, along with helpful references, they are far too busy to Skype.  Therefore I have decided to revisit the issue of support from the Alzheimer’s Society:  this isn’t a time to reduce my options for coaching!

I have an appointment with Maureen’s GP this morning to discuss her reluctance to take medication that was prescribed following her stroke.  I’m hesitant to give her tablets covertly because if she caught me out it would feed her paranoia that I’m trying to get rid of her.

Our Key Worker is popping in this afternoon so that he has an up to date picture of Maureen’s presentation.  This will also provide an opportunity to open discussions on the appropriateness of our current Care Package.

 

Dementia: ‘Having A Nice Day’

Mixed Dementia, ,

Image result for mcdonald's pictures

Things flared up again yesterday for the second Sunday in succession.  The early part of the day had passed without incident, apart from Maureen having no idea who Girl Sunday was.  On Saturday she had asked the same carer if she was my wife!

Our adventure started in the afternoon when Maureen became concerned about the whereabouts of Granddad.  I suggested that we should go and look for him, as this gave me a welcome opportunity to ease her out of a dressing gown that she had been wearing for 48 hours.  Once she was suitably attired we traced our steps of seven days ago. Although, we didn’t quite make it to a Close where she had made such an impact the week before.

We had a lovely walk, chatting about all sorts of things, for about an hour.  Maureen seemed in a hurry and I hoped that explained her hunched stature as we made our way back home.  Once in the house, Maureen became convinced there were dogs in the rear garden and ran off through the front door.

I trailed her around the streets for some time as she tried to get away from danger.  Once we neared home, I edged her into the car as a safe haven from canine attack. McDonald’s, once again, was a game changer: with a Chocolate McFlurry easing Maureen’s sore mouth and shifting her reality.

When we returned home, Maureen danced and sang to Nat King Cole as I cooked a late evening meal.   She was in great voice and the number of songs she knew was amazing.   Shortly after we had finished eating, Maureen made her way upstairs and eased her tired body into the marital bed.  I joined her a short while later leaving the kitchen looking like a bomb site.  After reclaiming my pillow -she had all three- we both had a good night’s rest.

I’m hoping that things will settle down this week.  We have familiar Girls on duty, apart from the weekend, and Mcdonald’s is only ever a stone throw away!

Just before posting I’ve played an Ace by telling Maureen that her sister will be able to come and stay with us in the newly built Sun Room.  If her brother and his wife follow up I know that we will see a very different Maureen.  She is delighted with the prospect of the family she misses so much being reunited in just a few weeks!

Dementia: Farewell Girl Friday

Mixed Dementia,

Image result for Girl Friday Picture

Today is the last working day of Girl Friday* before she goes on Maternity Leave.

Without Girl Friday I doubt Maureen would still be here.

She would have gone into a Care home a long while.

 

I hope we are able to give you a good send off this morning  Girl Friday.

You know Maureen: your care for her has always been person-centered.

I will always be eternally grateful for your wisdom and loving care for Maureen.

 I will never forget what you have taught me about dementia.

 

*Girl Friday has also been Girl Tuesday this week.  In the three years she has been caring for Maureen she has worked on every single day of the week.  She will understand that constipation will be playing havoc with Maureen’s presentation at the moment.  If my phone call to Single Point of Access doesn’t result in a prompt response we could both be in for a rough time this morning, which will be nothing compared to what Maureen is currently going through!

Update;  By 7 am we’ve both spoken to a Nurse we have the gear we need and expect movement by noon.

Dementia: She’s Landed A Beauty!

Mixed Dementia, ,

Image result for Black Eye pictureMaureen landed a beauty last night and I expect to have a shiner this morning.  She thought I was trying to force her to sleep with me and lashed out with venom making contact with the area around my left eye.  Anybody who is aware of Maureen’s history will understand her fears about what can go on in the bedroom even when you are married!

It took lorazepam and two visits from the Night Patrol of our Care Agency before Maureen felt safe enough to sleep in her own home.  I’m hoping that a quarter of a tablet will mean that she has a good rest and is still able to enjoy the fresh air she loves today.

It isn’t surprising that Maureen lost her bearings last night after a tiring day with far too many people here.  At one stage we had five workmen here along with three relatives and a carer.  The various comings and going throughout the day would have drained anyone.

If my shiner is as pronounced as I expect it to be will be I will tell Maureen I walked into a door.  There is no way I want to remind her of the dreadful experiences that led to her lashing out last night: they are best forgotten.  What I will refresh her memory of is the lovely time she had with her brother and a beautiful walk we had around the Boating Lake after another visit to McDonald’s.  I might even take her for yet another Raspberry McFlurry today because we did ‘have a nice day’ but oh what a night!

Maureen is very confused this morning: at 8 am I will telephone Clee Medical Centre to request a home visit for a review of her physical health.

Dementia: Trazodone – No Thanks!

Mixed Dementia, ,

 

 

Image result for No thanks PictureIt would be tempting to start Maureen on Trazodone after the events in the early hours  This medication has been  prescribed by a Specialist Doctor who has assessed Maureen and knows what lies ahead:

  • Maureen waking in the early hours not knowing who I am and accusing me of keeping her here against her will so I can have my wicked way with her.
  • An hour or two later she waking again wanting to go home but cannot find any clothes to wear.
  •  Having accidents after using the toilet and ending up in wet clothing.
  • Letting me have it with both barrels until she runs out of steam and falls asleep

I have been advised that putting Maureen on Trazodone will ‘make my life easier’ or ‘to let the Services do their job’  – an inference that there is no other way than to open the bottle.

What stops me from giving Maureen the fix is that from my perspective Trazodone is a one way street to a chemical cosh.  In no way is that a criticism of the Services that are trying to support us: it is a rejection of a medical model for dealing with dementia that is far from person-centered.

Maureen is sensitive to most medication: one tablet of citalopram put her in hospital.  The only blood pressure tablet she tolerates is lisinopril: she has had adverse reactions to any others that have been tried.  The passage below is almost a Black Box warning for someone with dementia:

‘Common side effects of trazodone include:

  • Headache.
  • Muscle ache.
  • Nausea, vomiting, loss of appetite, or stomachache.
  • Constipation or diarrhea.
  • Loss of interest in sex (erectile dysfunction in men)
  • Dizziness or loss of balance.
  • Dry mouth or dry eyes.
  • Numbness, burning, or tingling sensations.
More items…

 

Subjecting Maureen to Trazodone covertly is something she would not tolerate in any shape or form.  Therefore, there has to be another way to deal with this aspect of her current presentation.  She had a ‘Sofa Day’ yesterday: that is really something to focus upon!

No medication will quieten things down when plumbers arrive in number around 8.30. They will be making a lot of noise as they begin to create our new shower room. I’m not sure how I’m going to hold the fort until Maureen’s brother and his wife arrive mid morning.  Perhaps, the ensuing racket will persuade to get off the sofa and she will sleep like a newly born baby tonight!