Dementia: ‘Sorry I’ve Been Dumped On You’

General

Maureen woke up very early this morning as she felt cold in bed.  I immediately went into action with additional bedding and clothing.  As she settled down in bed again she said: ‘Sorry I’ve been dumped on you’.  I always try to counter such angst with phrases that communicate we are in this together, until death do us part.  On occasions I try to remind Maureen of all the times she has come to my rescue. Unfortunately, she has no recollection how her interventions have kept me alive in body and spirit on many occasions.

I have no idea what it is like to have dementia.  All I know is what it is like for me to be a Care Partner. Having dementia must be your worst nightmare.  To feel that you are a burden to your husband must put such a horror show off the ratings.

Maureen is singing in bed now I can’t quite pick up the tune.  Not sure who to call up on YouTube to cheer her up.   Best let her choose the music for once. Dementia has robbed her of so much – surely I can leave her to pick her own tunes to sing in bed.

It seems as if it might be another ‘duvet day’ as all clothing is uncomfortable or too tight.  Maureen is totally exhausted by trying on one thing after another.  I am hoping that further sleep will give her a break from her toils.  It may be a day where even more TLC is needed and we won’t venture far.

Dementia: Medication, Side Effects or Infection?

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Guess who forgot to put the clocks back this morning?

Maureen woke up early this morning choking with catarrh.  This led her to be very despondent about something else going wrong, and the need to see a G P once again.  It is likely that this is a side effect of lisinopril.  Maureen will have forgotten the attempts to move her to another blood pressure tablet because lisinopril causes post-nasal drip.  I think she has been around the block trying different tablets to address hypertension.  En route she has had side effects far worse than catarrh, so it’s always back to the old favourites.

It is possible that she has caught the infection that I have hopefully seen the back of now.  I didn’t have post-nasal drip it was more like a washer had gone on a tap inside my nose.  With Maureen’s sensitivity to medication it may be better to see how things develop before taking her to see her G P.  In the mean time I will make her some cherry linctus as that has helped before

Just to put my mind at rest I also need to revisit the issue of whether Maureen should be on aricept.  When the Clinical Psychologist from the Stroke Team diagnosed mixed dementia she mentioned that medication could help.  Some months later our Memory Service diagnosed mixed dementia and promptly discharged Maureen, as there is currently no treatment for this condition.

I have chatted to Maureen’s G P about this connundrum and he is well aware of Maureen’s sensitivity to medication and her reluctance to take tablets.  This is not going to be a simple matter to progress but  is a something I feel inclined to revisit.  I will chat over this dilemma with our social worker, and Admiral Nurse, when we meet together in a week’s time. Oops I almost forgot this is another reason to catch up with Yvonna my pharmacist friend.

Once again it is time to thank my friends on Talking Point who have reminded me of the potential benefits of aricept.  It is so helpful to have access to this Site 24/7, as there will always be someone to offer support or try to help you when you might be going down a dead end.  From what I have seen that is where the real expertise on dementia resides; ‘old hands’ who help apprentices like me try to find the best route for Maureen and I on our journey with dementia.  Some of the more experienced Care Partners don’t always agree with my style, and approach, to being a Care Partner but Talking Point is a Broad Church.

I just hope that we haven’t experienced another mix-up that has led to the progression of Maureen’s condition.  Early diagnosis was prevented because of protocols within the medical profession and the reluctance of others, including family members, to accept that there were symptoms of dementia .  When Maureen suffered stroke; delays in diagnosis prevented thrombolytic intervention.   I am just hoping that a disagreement over diagnosis doesn’t mean that it is now too late to consider aricept.

Dementia: From Harpo to Sleepy

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Last night I had to hastily change for a ‘Harpo Marx approach’  to becoming Sleepy one of the Seven Dwarfs.  When Maureen is resting and I want to gently wake her up I become Harpo and whistle. Unfortunately, she was so spark out on the sofa after an evening walk yesterday that Harpoism failed.  I tried several times but she refused to stir, and slept on.

Well past our normal bed-time I realised that Harpo had lost his touch, and she could be on the sofa for the night.  So I then turned into Sleepy by sorting out a bed on the floor and lay down for the night.  Within minutes something irritated my throat leading to coughing and Maureen immediately woke up.  She was delighted that I had decided to bed down in the same room, as she recalled  confusion when she first wakes.  These are often the times when abject confusion takes over, and she has no idea where she is in her life history.  Those are the moments when I have to be very careful because if she thinks I am a shadowy figure from her past I am in for a rough time.

Although she welcomed my kind gesture she still hit me with a barrage of questions once I edged her upstairs.  At one stage I thought I might have to go to the spare room so she didn’t think I was the someone else who is often in her thoughts.  As she drifted into sleep I realised that it was one of those times when ‘night night’ was the safest way forward.  Any form of physical contact may have spooked her and revived haunting memories.   Although we shared the same bed I am not sure she knew who I was.  Perhaps ‘that kind man’ who helps her with all sorts of things.

Dementia: ‘Can I Have Two Minutes On Neuroplasticity?’

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When I popped in to see Yvonna yesterday she told me that she was busy and stayed behind the counter.  I edged her into the consulting room with: ‘I could just do with a couple of minutes on neuroplasticity’.  Yvonna is always generous with her support to me, as I seek mentoring on my approach to being a Care Partner.

Yvonna has a very holistic approach to well-being; she is well read and has a sharp mind.  The Branch of Lloyds where she is the Pharmacist is within walking distance of  our home. Walk-in expertise on the doorstep: what more can you ask for when you are trying to find your way with dementia?

I wanted to run by Yvonna how music is making such a difference to our lives.   When we have chatted about this before she commented: ‘you have found your way’.  What I wanted to share with Yvonna was that Maureen was learning to  sing along to new songs.  Yvonna is a great one for bringing you down to earth:  with a smile on her face  she suggested that ‘I would need to be working with a group of 50 people for 5 years before there was real evidence that my theory had substance’.

I squeezed more than two minutes with Yvonna and left with further cause for thought.  Music has allowed us to find our way: we sing, dance and have fun with YouTube several times in the day.  What I wonder is if I put Barney on again whether Maureen can learn, and retain, far more than the chorus?  What I do know is how sorry she feels for the lad singing:  ‘I wish I had someone to love me’

I don’t think it will be long before I am back, for another ‘two minutes’ ,to let Yvonna know how things are going.  It is such a bonus to have such expertise, and radical thinking, on the door-step.

Dementia: Peripheral Vision and Compassionate Communication

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I think our luck may be changing as we try to find our way on this journey with dementia.  A chance conversation yesterday has opened up a new front on Maureen’s 50% loss of peripheral vision.

As I wandered around Cleethorpes yesterday morning I caught site of Pete’s wife as she stood at the till in her hairdressers shop.  Pete was in hospital at the same time as Maureen, as his stroke had taken place at about the same time.  The only difference being that Pete had been taken straight to the Stroke Unit at Scunthorpe to be thrombolised.  Margaret his wife then told me of other major differences that Pete had experienced in his treatment following stroke.

Pete continues to be treated as a stroke patient: whereas Maureen is seen as someone who has dementia.  Maureen was promptly discharged from the Stroke Team quite some time ago, and moved onto to the Memory Service.  They  discharged her with a diagnosis of mixed dementia as there is no traetment for the condition..

Pete has a diagnosis of Mild Cognitive Impairment and his treatment is still coordinated through the Stroke Team.   We are left to our own devices.   This could be the subject of further examination but it is visual loss I want to move onto next.

I didn’t ask Margaret for detail but Pete has suffered peripheral vision loss.  He has now been referred to a specialist eye hospital in Sheffield to explore possibilities, with the best expertise in the country.  This possibiliy came about through contact with the Blind Society.  Referral from Pete’s G P has led to an early appointment.

It is likely that I chose the wrong moment to share Pete’s path to Sheffield with Maureen. She was eating her breakfast and bantering with Chloe, the carer.  What it served to remind us of is Maureen’s recollection that a specilaist optician, at the hospital, had promised to make her some special glasses.  She has held onto this dream, and that is what it is, so we need to chase up an appointment.  Once that has come to its natural conclusion, and no glasses, it may be possible to revisit the idea a trip to Sheffield.

No matter which road we take next on our journey, Maureen believes it is possible to get her driving licence back.  Despite being told by several experts that she will never be able to drive again she still hold onto her dream.  Little point in challenging her dreams.  I always share her disappointment that the Care Agency don’t send Maggie any longer.   Maureen believes she was going to help  her to get that licence back.   I have never challenged this idea:  compassionate communication, or telling porkies, is often the only way to get anything approaching a peaceful life with dementia around.  I must also remember not to try to discuss important issues when someone is eating their breakfast!

Dementia: GIGO

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I have often resorted to the computer acronymn to explain Maureen’s presentation.  To take it to a personal level when my performance is garbage I get it thrown straight back in my face.  That slap on the chops when I pursued personal questions about underwear really hurt.  Not half as much as the injury to Maureen’s pride when I asked questions about her personal behaviour: no wonder she slapped me across the face.

We only have to look at  Maureen’s reaction to Girl  Thusrday to give more weigh to my GIGO assertion.  Maureen had been a little uncooperative.  Paula said : ‘She won’t have her porridge’.  After she had gone it became clear what had gone wrong Paula had kept trying to get Maureen to cooperate by saying Paul said you need to do this, that and the other.  Red rag to a bull as Maureen as she had been ‘deserted by Paulwho was off out on the town yet gain’.

Maureen was putty in the hands of Chloe today.  I listened as she tried various approaches until she persuaded Maureen to take a shower.  It went something lke this.

Chloe: ‘Want a shower Maureen?’

Maureen: ‘Not today, it’s too cold’.

Chloe: ‘Do you want your hair washing today?’

Maureen: ‘Can you do it over the sink?’

Chloe: ‘I’ll pop the towels on the radiator in the bathroom’.

Maureen: ”That’s a good idea.’

Chloe: ‘ While we are up there are you going into the shower?’

Maureen: ‘Ok then’

Chloe: ‘See you up there in a couple of minutes’

Chloe works in this way with Maureen throughout the three hours she is here.  As she says she ‘never pushes Mauren to do anything: she lets her potter’.  We did well when we chose to adopt Chloe as our Daughter.  Paula didn’t have a chance she hadn’t been here for six months and had no idea how Maureen’s presentation had changed in that time.  I would put money on her getting it right the next time.  Cute cookies these carers: garbage doesn’t stay around for long when they are on the case.

Dementia: A Willingness To Listen

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The last two days have convinced me that it has been worth standing my ground and perhaps ruffling a few feathers.  Just to give an impression of how I continue to deal with my tendency to ‘take them on’; my focus in 2015 has been to praise when I receive good service.  I have had an amazing responses to thanking individuals and organisations, when I have kept my word.  So I have learned  it’s good to praise as well as suggest improvements, when things don’t go well.  That has been my approach in attempting to resolve the support we need on our journey with dementia.  What I have been trying to achieve is to get the same quality of service we have received from Clee Medical Centre, since Maureen’s diagnosis, replicated across the board.  After a period of struggle I now think we are on the way.

It’s important to point out that any time I have asked questions, or raised concerns, there has always been a willingness to listen.  At a time when austerity measures are taking a significant toll on services the door is still open for a rethink: to take in comments.  I think it is commendable that North East Lincs are prepared to listen.  At no time as I have pressed a hard, and sometimes presented an unpalatable line to the authorities, has anyone ever shut the door on me and hidden behind lack of resources.  When you are trying to improve Public Services  you can’t ask for anything more than that.

I am confident that a suggestion I have about how Sue our new social worker will get to know us will get favourable consideration.  I am nervous that the My Life  approach might be doomed as soon as the folder comes out of Sue’s bag.  So I have a  ‘cunning plan’.

I think it is possible to use planning for my 70th as a way of getting to know us.  It is something we have already skirted around, and the folder is on the table: so to speak.  I am pretty confident Sue and I will be able work intuitively;  using holidays as a way of getting to know us.  We already have lots of resources at hand: mountains of photographs.  We also have a DVD of the Baltic Cruise that we went on for Maureen’s 70th.  So lots to go on as a vehicle for introductions and sorting out tactics for the future.

I hope I am not being selfish here.  Be interesting to see how much leniency I will get at my tender age. After all: ‘It’s my party and I’ll cry if I want to’.  I wonder what Lesley Gore is doing these days?

Dementia: ‘What Did I Do To Deserve This?’

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Maureen was feeling very sorry for herself last night.  She became so upset that I encouraged her to go to bed at 8 ‘o’clock.  I had inadvertently brought about a spell of self-pity with my choice of music on YouTube.  Playing our Songbird reminded Maureen that two of her children had died.  She was almost inconsolable as she sobbed: ”Why me; have I been a bad person?’  I did my best to console her and assure her that she was not responsible for Kevin, and Denise dying far too young: her son at 4 months, and her daughter in her 50’s.

I have never heard Maureen go in for self-pity in the time we have been together.  She also said something along the lines of: ‘I meet a nice man and now I have got trouble with my leg’.  A reference to trouble with her left leg following stroke.

As she slept I  thought about a couple of things.  I just wonder if I can cajole Maureen into a trip to Coventry?  I deliberately put Maeve on YouTube to try to motivate Maureen to contact Denise’s daughter.  It doesn’t appear that communication is going to come from Coventry or that long promised visit.  I am trying to ‘nurse’ Maureen into a trip to Coventry.  At the right moment it might just evolve: just like Nottingham.   The other matter concerns the possibility of therapy about unresolved grief.

Any type of therapy is alien to Maureen:  with a predispositon for ‘flight’ she has always buried bad news.  Her solution is to scarper when things get too hot for her.  This is her approach to dementia with denial presented as: ‘I lost my memory once’.  Unfotunately, there’s no hiding place from. dementia..

I think it is worth seeing if we can create opportunities for Maureen to talk about all sorts of things.   I think I met  the woman for this job yesterday morning.

Dementia: Professionalism, Empathy and Compassion

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Within minutes, this morning, I came to the conclusion that our new social worker was the business.  One of my shortcomings is I make my mind up about people within the first few minutes of meeting them.  Sometimes, I get it wrong but I would put my money on Sue being just what we need.

I wouldn’t claim that I have a formula for sorting the wheat out from the chaff; it’s more of a gut feeling. Throughout the hour or so that we spent together Sue exuded, professionalism, empathy and compassion.  Perhaps what sealed it was when she said: ‘You are the expert here: you are on duty 24/7’.

I know I have a reputation for fighting my corner and often polarising things.  It’s my dad’s fault you see as I outlined in an earlier post – he taught us not to be pushed around.   However I know he loved both my mum and Maureen and would have said: ‘the ends justify the means’.

There is no way the sins of Sue’s sisters were going to be sorted out this morning.  That will be done in another place.  What I am pretty sure of is: this straight talking woman will deliver, and we will now get the support  we need.  I have no doubt whatsoever that I will now be able to be a person in my own right, as well as a Care Partner for Maureen.  It won’t be long dad before I am able to keep my promise that I made to you about mum.  You will also be pleased to know that I can become the ‘Old Man’ again to my own children.

Oops I nearly forgot Sue is going to complete a ‘My Life‘ profile with Maureen.  That sealed it for me.  She is going to give Maureen the chance to tell her story.  S he wants to hear it ‘from the horses mouth’ not an edited version from a third-party.  I knew that all this DIY  is not needed.  Some social workers understand their role and the pressure Care Partners are under.  They don’t expect the likes of me to do their job for them!

Dementia: ‘The Old Man’

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There’s a verse from a song that I keep playing on YouTube that I can’t get out of my head this morning.  It goes something like this:

‘I never will forget him

For he made me what I amFinbar furey Live in 2008

 I miss him

The Old Man’

It’s not surprising that this song is reverberating around my head this morning.  I want to keep a promise that I made to my dad as he lay dying on a hospital bed.  I whispered to him that: ‘I would look after my mum’.  He would know that I would try to play my part in looking after mum following his passing.  He would understand why I have not been able to see her for three months.  He would also want me to look after Maureen.

Just taking the second line of the verse above: ‘He made me what I am’.  Jack Collins, as he was fondly known at British Leyland, was a great dad to me, my brother and two sisters.  He taught us all not to let anyone push us around.  He was always challenging those who had sold him short.  His letter writing to all sorts of vendors, who had not treated him fairly, would need to be seen to be believed.

I am also an ‘Old Man’ to four children – the youngest almost 30.  I have not been able to be a dad to them for quite some time.  They could quite legitimately view as me leaving them for a second time.  I walked out on living with them over 20 years ago.  It has not been simple to spend time with them in the last few years: I have allowed domestic matters to get in the way.  They have been very understanding over immediate pressure in my own life: some of them more than others.

I am having my first meeting with our new social worker this morning.  It isn’t surprising that  Finbar Furey’s song is in my head.  My priority has to be sorting out my promise to my dad, and becoming the Old Man to my own family once again.