Category Archives: Mixed Dementia

Dementia: Lost, Confused and Bewildered

Mixed Dementia,

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We are both struggling this morning.  Maureen clearly doesn’t know where she or who I am.  A short while ago she told me that lots of men were telling her they were her husband.  She also keeps asking me if we are going to go home today.  These themes are not new but she appears to be more frightened than I have ever seen her as she tries to deal with her confusion.

I’m also bewildered this morning by two things that appear to be lost.  I have spent ages looking for one of Maureen’s favourite slippers.   They are particularly precious to her as she bought them with some money her sister sent her shortly after her stroke.  I have hunted high and low in all the normal hidey-hole’s and they are nowhere to be seen.  I’m also similarly mystified where a plastic container with all the remedies for Maureen’s sore mouth and tongue has gone.

Maureen is now spending an increasingly amount of time being lost.  Her ability to recall is minimal – on rising this morning she became very distressed that she couldn’t find her way back to where she had been sleeping.  She continues to struggle to find her belongings and the accusations about people stealing her things is now a daily occurrence.  These aspects of her current presentation would hardly be helped by moving her out of her current surroundings into a Care Home so that her Care Partner can have a much-needed rest: home based care remains the safest option!

Dementia: A Timely Reminder

Mixed Dementia,

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Ode To A Care Giver

From Wellspring Village Residents at Brightview Concord River

Always be patient for those in need

You must be a good listener, a good listener indeed.

Always be willing to lend a hand

And empathize so you understand.

Always remember the success I’ve had,

So don’t get discouraged or feel bad.

Put yourself in our place each day you’re here

Speak slowly and calmly, keep communication clear.

Join my reality and focus on what I can still do

Because I’m still here, still here with you.

Ends

Tracey MaxfieldThe above Ode was sent by Tracey Maxfield (pictured right), one of my contacts on Linkedin.  It is typical of the support we receive from all over the world since I started blogging.  I think she must be psychic as the reminder to ‘speak slowly and calmly, keep communication clear’ was really needed today.   I was far from calm when Maureen was missing from the marital bed earlier this morning.  In fact,  I panicked for a while until I found her safely tucked up in the single bed that I regard as ‘my den’ in the lounge.

Today is the second Friday in a row that I have decided not to have a break from my kitchen duties by having fish and chips at a local Care Home.  Another invitation to eat out would have been declined by Maureen today as she knows I usually have haddock and potato wedges on the menu.   What is reassuring is that staff in local Care Homes’understand that Maureen prefers home cooking and ‘where I’m coming from’.  They accept that for Maureen to spend time in their company would not be in either of our Best Interests at the moment.  What a pity that some members of our Multi-Disciplinary Team may well not see it that way when Maureen’s Best Interests are formally discussed next Thursday!

Dementia: We Are Both Spitting Blood

Mixed Dementia

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Maureen has been spitting blood this morning as she tries to address the ongoing soreness in her mouth.  I hope I’m able to encourage her to keep cleaning her teeth and use a mouthwash to try and eradicate what has become a chronic condition.  My blood spitting was of a different order yesterday as I explained my concerns to our Key Worker about how Maureen had been mistreated in the last few years.

There were clear signs that there was something wrong with Maureen’s cognitive and functional capacity well before her stroke.  Unfortunately, family members were in denial and the medical profession was reluctant to explore my concerns.  A belated diagnosis of stroke three years ago left it far too late for any kind of medical intervention.

Maureen’s eventual diagnosis of vascular dementia led to discharge from the Memory Service. As one of their Consultants explained to us ‘you have to accept a new reality’.  What concerns me as the Best interest Meeting draws closer is that reality has hardly been person-centred based on Maureen’s life experiences.  All too often, the focus of professional staff has been on the disease and not the person: with a medical model lingering in the background.  Their one size fits all approach to supporting Care Partners fills my mouth with an unpleasant taste with the BIM a week away!

Dementia: Compassionate Company

Mixed Dementia,

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Although yesterday was a little disappointing we both had the pleasure of enjoying some compassionate company.   Wayne our chauffeur, like all of the staff of Airport Travel, treated Maureen with dignity and respect.   From the time of our arrival at Madyhamaka to our departure lots of people went out of their way to make our short stay as comfortable as possible.  It was refreshing to see Maureen treated as a person rather than someone who has dementia.  What a lovely change from the approach of many who darken our door and under the guise of a person-centred-approach cannot see beyond her diagnosis.

 

Dementia: Seeking Respite At Madyhamaka

Mixed Dementia,

I will try and persuade Maureen to accompany me to the Buddhist Meditation Centre at Pocklington today.  Airport Travel is on hand to chauffeur us for the short break that we both desperately need.  The thought of being served wonderful food along with compassionate people in beautiful countryside lifts my spirits and eases the pain in my aching body.

Maureen was reluctant to go anywhere yesterday: she appeared to greet my suggestions for a day out with suspicion.  What she doesn’t understand is that time is running out for us to demonstrate that there are there are ways of me recharging my batteries without putting her in a Care Home.

My discussion with the staff at Homefield House went well yesterday and we have a plan to introduce Maureen on Friday that aims to minimise her distress.  It is very different to similar facilities I have seen in the area.  As our Key Worker implied it is akin to a place where Ladies Lunch with waitress service and sherry served with meals.  Despite its many positives, it is a Care Home and I anticipate that Maureen may see what it is and react accordingly.  I am also unclear whether the level of stimulation that Maureen needs will be available from fellow residents.   All we can do is stick to our ‘cunning plan’ and react accordingly.

If I am unable to persuade Maureen to take a break at Madyhamaka we are likely to face the one size fits all approach to dementia – Respite in a Care Home.  The Best Interest Meeting is likely to remind me ‘that I’m not a robot’, as our Care Coordinator pointed out the other day, and want to ensure specific arrangements are in place so that I continue to have the energy to look after Maureen in our own home.

Dementia: Procrastination and Patience

Mixed Dementia

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We have slept together in the marital bedroom for most of the last 8 hours.  It wasn’t a bad night as Maureen only woke a couple of times.  When she woke the second time, convinced she had lost Maeve from sleeping beside her, it took over half an hour before she accepted she had been dreaming.  It wasn’t surprising she had been thinking about her ‘missing’ granddaughter as there had been lots of chat about her during Sunday afternoon.  Her dream is a prime example of her inability to recall as was her distress just before we turned in when I was out of sight for a few minutes and she said she hadn’t seen me for hours.

Within a couple of hours of their departure, Maureen had no recollection of her visitors on Mother’s Day.  In fact, she asked me if her son had been as she couldn’t remember seeing him.  How sad that she had no recollection of the couple of hours she had spent with her son, his wife and their four children.  Her focus on Maeve had arisen because our visitors were on their way back home from her 18th Birthday Party.  It is also sad because Maeve used to be a regular visitor when her mother was alive and she hasn’t been here for some time.

Maureen is still at home because the Care Home I have in mind for a Resite Break was understandably unable to carry out an assessment yesterday.  I have an appointment to meet the manager at 11 am to discuss how we can encourage Maureen to take up temporary residence with the minimum of distress.  Procrastination is indeed the thief of time but patience has to be paramount if I am to get the break I so dearly need!

Dementia: Seeking Immediate Respite

Mixed Dementia,

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This is a live feed at 4 am as Maureen onslaught of the last few days shows no sign of running out of steam.  She ‘doesn’t want to be here has no trust in me’ and continues to list my shortcomings.  I am exhausted and there are questions about my ability to keep her safe and protect my own welfare: something has to give and today may be a good time to seek a temporary resolution.

I am reluctant to give detail after previous false starts but I think I have found a Care Home that can meet Maureen’s needs.  The problems associated with getting her there could be resolved today with the support of one of her sons.  He will be arriving with his family later this morning and it is possible that we will be able to move Maureen into a place where her needs can be met with a minimum of distress.

 

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: The Penny Has Finally Dropped

Mixed Dementia

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It has taken a long time but the penny has finally dropped- the Best Interest Meeting on the 6th of April is now the only way forward.  Maureen continues to be a combative mood, struggling to accept that she lacks the capacity to decide upon her future care and accommodation.  There is little point in relating her ongoing diatribe about her incarceration here and my shortcomings.  This is ‘Mrs Dementia’ at full throttle rather than my lovely wife.  My Support Plan is no longer adequate to cope with her presentation: Carer Burnout is looming.

I know that the hard-working professionals who are doing their level best to support us will understand how difficult it is when a loved one is changing beyond all recognition and you are doing your best to hang on to what is left.  Therefore, it is reassuring that the meeting on the 6th of April will seek to protect both of our interests.

Our Key Worker managed to put in some additional support yesterday and more of the same will be needed until the BIM.  ‘Girl Thursday’ also gave me some helpful coaching with a stark reminder ‘not to pander to her’.  Worn out after another night with little sleep I was misguidedly giving options to Maureen rather than serving her food that she usually likes.  With sleep in my eyes, I had forgotten that she lacks the capacity to make decisions. However, she is definitely leaving here today: ‘no longer prepared to be a skivvy in this Care Home!’

I have just stumbled across this poem which is worth reflecting upon as the BIM draws closer:

Dementia: ‘Peach’ Is No Distraction

Mixed Dementia, ,

I decided to remind Maureen today was her Granddaughter’s 18th birthday.  Conversations earlier in the week had resulted in ‘she doesn’t send me a birthday card, why should I send her one’.  However, as her mother died and we undertook to try to maintain a close relationship with the young lady I reminded Maureen of the special occasion this morning.

Things went exceptionally well for a while with Maureen singing along with her Granddaughter on YouTube.  This is one of the numbers that Maureen really likes:

Maureen accompanied Maeve for quite some time, waving to her and clapping after every number.  Then problems emerged as Maureen tried to work out how to send a birthday greeting.  My explanations were not well received as I tried to help her understand that YouTube was not interactive and Maeve could not hear her accompanying her singing.  I even suggested visiting the  Birthday Girl in Coventry but that fell on deaf ears.  After a while, things turned really sour with Maureen returning to a familiar theme of being brought to this house against her will.

When Maureen is ‘wanting to go home’ there is little I can do to shift her reality – it is one of those occasions when distraction and redirection rarely work.  I will need additional support today if I’m going to survive Maureen’s current presentation.   Once again I’m looking to our Key Worker to come to my rescue with his usual person-centred approach to our situation.

One final point it is my guess that the forthcoming Best Interest Meeting has triggered unfortunate changes in Maureen’s presentation.  Her advocate was here yesterday and the last time she was here Maureen was distressed for a couple of days.