Category Archives: General

Dementia: Thank Goodness For Our Flexible Friend

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Yesterday morning Maureen and I had two really contrasting experiences.  I had a good morning with my meeting with our social worker and Admiral Nurse going really well.  Maureen had a distressing morning  feeling that Chloe  was here as she is not safe to be left on her own .  Maureen now feels that carers are providing a babysitting service for her.  Hence her question in the evening of: ‘Are you babysitting me tonight?’

Maureen has also posed why we need ‘the ladies’ at all?  She wants us to ‘do things as a couple again’, and resents the intrusion of carers in our affairs.  She makes a fair point, and were I in her position I would be raising the same question.  One of the benefits of working with Sue, our new social worker, is that she stresses the need to keep our options open with a flexible Care Plan.

I don’t know what we would do at the moment without our flexible friend:  a social worker who accepts the dynamic nature of dementia.  She has also accepted that Maureen and I will travel this journey in Our Own Peculiar Way.  This means that we want to choose our own path, rather than follow the beaten track of the biomedical model.  I have mentioned on several occasions that Irving Kirsch and Kate Swaffer are our spiritual guides.  Therefore our views on chemical imbalance as a determinant of mood and Prescribed Disengagement as a way of life are fundamental to our approach to our journey.

It would be hypocritical of us all  not to consider Maureen’s assertion that she doesn’t need baby sitting.  She has rightly issued a healthy challenge to us all, and it needs to be given very careful consideration.  Interesting times lay ahead as Maureen begins to regain confidence and become assertive.   No complaints from this quarter: it’s all evidence that the holistic medicine that is being applied daily is taking effect.  All I need to remember is that Maureen ‘is not ill she is recovering from stroke’, and sometimes she needs to rest!

Dementia: Independence or Safety?

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I am hoping that today will help me to review my approach to Maureen’s safety and independence. If this morning’s meeting goes as well as I am expecting, some things will be put in place to make our lives simpler.  This might just help me to end the habit of waking up early in the morning and ruminating over outstanding business.  A better sleep pattern would also help me to catch up on some important reading rather than doze off after a few pages.

In the past I have often used Talking Point to find a way forward on our journey with dementia.  I would not have coped without the suggestions and advice I have received from this excellent Forum. However, my meeting with our social worker, and Admiral Nurse, this morning, offers something even better: an opportunity to discuss matters with professional staff who understand dementia, and know us both.

Our focus has to be on steps to maintain Maureen’s progress following stroke. We need to hold to the line that: ‘Maureen is not ill – she is recovering from stroke’. There is considerable evidence that this approach is paying dividends. However,we need to explore further ways on helping Maureen to regain her confidence and independence.  Any regressive movement in the direction of focusing entirely on keeping her safe would be ill advised.

My plans to visit my daughters in London next weekend provide a helpful focus for our discussions. We need to find a way of involving Maureen in conversations about the support she needs in my absence. I have vered towards a safety first: approach suggesting round the clock care while I am away.  Such an approach is inconsistent with attempting to help Maureen regain her confidence, and independence.  This morning is going to be interesting and particularly challenging to your truly:  ‘put your money where your mouth is come to mind!’

Dementia: Neuroplasticity – Are We Overdoing It?

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One piece of advice about the brain is: ‘use it or lose it’ to seek neuroplasticity.   However, as we have been cast adrift by the Services in this area we have been  left to find our own ways of helping Maureen’s brain repair itself by developing new neural pathways.. There are lots of  groups or activities that Maureen and I could attend in the community but it is not as simple as that.  Maureen is averse to attending groups that label her, and place her alongside others who have memory issues.  Therefore my approach is to provide in-house cognitive stimulation.

With my background in adult learning I am used to trying to find different ways to get a message across.  However, I have a feeling that on  occasions I may be exposing Maureen to far too much stimulation.  My concern here is that tiredness will lead to frustration and become counterproductive.

If you met Maureen when she has energy you would not believe she had experienced stroke or been diagnosed with mixed dementia.  On most days my intelligent wife is around for significant periods of time.  When she is tired a different woman is in residence.  My task now is to accept that it exhausts her to process, and make sure activity is always followed by rest.

I am generally full of ideas that provide cognitive stimulation.  Early yesterday morning we had our own version of ‘Singing For The Brain’,  a little later on we were speaking in French to each other.  As Maureen slept off our busy morning I decided that we would coast for the remainder of the day.  So I resisted nagging her to respond when the phone rang in the afternoon.   She doesn’t like using the phone at the best of times.  Therefore I respected that she didn’t want to take a call, even though she knew it was probably her son.  As she said: ‘if it’s important they will ring back’.

Each day new possibilities arise for cognitive stimulation, and I have to work with Maureen’s mantra of: ‘slowly slowly catchee monkey’.  Our journey with dementia is not a sprint – it is a marathon. The exciting thing is that in training, on most days, Maureen often achieves a personal best!

Dementia: ‘Trouble In Big Brother’s Household’

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I took a worrying call from my sister in law yesterday that all is not well in my brother’s Nursing Home. Apparently there has been a significant downturn in the quality of care John has been receiving in the last few weeks.  This is such a shame as John had seemed well cared for: surrounded by lots of ‘lovely ladies’ who attended to his every need.  Now the signs, approaching neglect, are clear to any observer – with Jean having genuine concerns about her husband’s personal care.

At this juncture I think it is worth revisiting John’s journey to his Nursing Home.  His route to diagnosis has a familiar ring to it; with close family taking a while to accept that Alzheimer’s was causing radical changes in his behaviour.  Once his condition was out in the open we struggled to know how we could help.  As things got more difficult for Jean to cope with she persuaded John to attend a local Day Centre.  When she sought respiteone weekend John’s destiny was sealed.

Unfamilar with new surroundings John struck out, so we are told, at a carer.  Police were summoned and John was sectioned.  A considerable spell in a Mental Health Unit resulted in chemical intervention, to calm down his behaviour, so that he could be placed in a Nursing Home on continuing health care.  How fortunate that Maureen didn’t lash out at anyone when she was dumped  by a social worker in her ‘Mental Home’: it’s scary to think about where that might have led!

Whenever I have visited John he has seemed happy: comfortable and surrounded by ‘lovely ladies’.  A new manager has recently been appointed and staff turnover has been high.  John’s main carers are now predominantly bank nurses from an Agency.  Few of them really know John and may well not understand his personal needs.  As his wife says she has had to call at John’s Household on a daily basis in the last few weeks to make sure he is clean.  Staff shortages and the influx of new staff have led to personal care of residents falling by the wayside.  The Nursing Home has never been spick and span but now the constant aroma says it all.

I am often told that Maureen is at the most challenging stage of dementia.  I don’t mind the daily challenges one bit.  Yes it is tiring and I wish my wife had never had a stroke with ensuing dementia. However, I don’t relish the day I can no longer cope seeing her neglected by others and not knowing where to turn.  No wonder this is on my mind so early in the morning as I can’t easily get down to see my Big Brother or give my sister in law any support at thois moment in time.

When you are a Care Partner you soon learn who your real friends are.  It only took an EMail, to the Coventry contingent, and my daugher and two sisters sprang into action as soon as I passed on  how distressed  Jean had become.  The other thing you learn is never to pass on any bad news, of any kind, to Maureen she has enough to deal with!

Footnote: Just remembered today is ‘Sunday Roast’ day.

Dementia: Mayhem at 3am

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Just for once I thought I had got it right last night when Maureen went to ‘rest her legs’ shortly before 8 pm.  She woke an hour later and asked me ‘if it was time to go to school ?’  On hearing that it was Saturday, she went back to bed and closed the bedroom door.  When I turned in a couple of hours later I went for the spare room to make sure I didn’t disturb her.Image result for Mayhem graphic

At 3am Maureen went to the bathroom and complained that ‘she was cold’.  She wondered ‘how she had got here?’  I left her to it for a while and she went downstairs to search for socks.  She continued to complain that all the radiators were cold.  After a short time I joined her downstairs and eased her back to bed.  The curtains were wide open in ourbedroom and the street light  beaming in.  I closed the curtains, added some additional bedding, introduced a warming heatie-wheatie and enquired if I should join her in bed.  After a while of reassurance from me, on all sorts of fronts, Maureen returned the land of nod: no such luck for me.

If I don’t find a way of getting more sleep soon I am going to be in trouble. My body is crying out for more rest but I am struggling to find a way forward.  I am sure my leg and shoulder problems would be eased by both following the recommended exercise routines and more rest.  I could be that my gastric problems that will be investigated in a week’s time might be eased if I slow down a little.  Unfortunately, once I am awake I can’t seem to be able to take off my thinking cap.  I am very concerned about the news I received on my brother yesterday and that will feature in a post in a couple of hours.

It is never easy for me to develop a healthy sleep pattern, and I need to do something to address my current round of early morning wakening.  Unfortunately, there is so much going on at the moment that it is difficult to switch off once I am awake.   Perhaps the solution is to sort out one or two pressing matters, then I will be able to sleep a little more peacefully and for just a little bit longer.

Dementia: It Keeps You On Your Toes

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I recall when the children kept coming along in my previous marriage people would say: ‘they keep you young’.  I wasn’t always sure about that, and when we had four in tow we decided to call it a day.  With dementia I would say: ‘it keeps you on your toes’.

There are lots of reasons I need to stay wide awake at all times.  I need to keep Maureen safe and I have to keep an eye on what she is doing at all times.  If not there is a risk that she might come to harm by burning herself for example.  Then there is the chance she will forget where I am and wander off to look for me.  She is fine at going out for a walk but not so clever at finding her way back home.  Once I hear the door open, or can’t here her in the house, I have to move quickly or she is out of sight on a walkabout.

The other way Maureen keeps me on my toes is the the way in which her mood can change so quickly.  Sometimes I know what causes her ‘to go cool on me’, at others I have no idea what has lead to hostility.  Yesterday, Maureen became Mrs Angry when she heard I was going to the Leisure Centre in ‘her car’.  When I returned home a couple of hours later my loving wife was back responding positively to my positive comments about how good she looked after her hair do.  In fact she was totally preoccupied with the need  to give Chloe,our carer, a tip for her good work.

Teepa Snow says you need to hone your observational skills, become a detective, when you are supporting someone with dementia.  Such investigative skills would be helpful along with the need to stay on your toes.  Strange that as today is ‘Soccer Saturday’ as I always listen to the Sky Blues match on the radio this afternoon!

Dementia: Pot Calling the Kettle Black

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Maureen was totally exhausted yesterday afternoon.  When I looked back on what had happened in the morning I think I worked out why.  Maureen was still in bed when Chloe arrived so she immedaitely joined her and sat on the beside  chatting.  This was still going on when I left to go to the Leisure Centre.

When I returned Maureen looked lovely after a morning’s pampering.  Once Chloe had gone it became clear that Maureen had been exhausted by the morning.  She had not been left to ‘come round’ in her own time.  Then I imagine she would have had breakfast to be followed by a shower and having her hair done.  The chatter and banter would have been non-stop.  No wonder there was a look of relief on her face when she signed Chloe’s timesheet and bade her farewell.  Maureen’s immediate reaction was to seek refuge on the sofa, and I left her to it while I prepared lunch.  She joined me in the kitchen after a while and laid the table in a fashion.

Maureen always enjoys our Friday luch of home cooked fish and chips. She ate well and  was allowed sweet – an old joke from both of our chidhoods.  Then she took to the sofa and slept for a considerable period of time.

In the evening ‘Paul the Pot’ took over, and in retropsect put Maureen under significant pressure.  Following a late evening walk we popped in to see some neighbours and stayed chatting for half an hour or so.  When we returned home Maureen revealed how challenging our visit had been for her.  It had confronted her with how stroke had damaged her memory, and left her very frightened.  Maureen had no recollection of being in Hayley and Abb’s house before.  Although she enjoyed their company one of her comments during our chat with them was telling: following stroke ‘she thought she was going mad but realised she had lost her memory once’.

Unfortunatley, I fell asleep on the sofa shortly after returning home. When I woke up I was ‘lashed with resentment’:  that I am always talking to other people but don’t talk to Maureen.  In retrospect Maureen was ‘letting me have it’ for subjecting her to a very challenging situation, because I wanted to socialise.  Popping in to see neighbours late at night is the last thing you need when you are recovering from stroke!

I hope I have learned my lesson from the events of yesterday.  It is important to encourage Maureen to spread her energy over the day.  This is easier to do when I am at the helm: providing I remember Maureen is recovering from stroke!  It must be so difficult for paid carers to know how to work with Maureen, as she is keen to do things,.  What we all need do to is help Maureen to pace herself and spread her energy out over the day. Something that ‘Paul the Pot’ needs to keep to the forefront of his plans both day and night!

Dementia: Pain and Discomfort

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Despite our good news posted earlier, pain and discomfort are dominating our lives at the moment.  My leg, and shoulder, pain is back with a vengance. Maureen’s discomfort and distress over clothing has returned.  There is a simple solution to my difficulties but Maureen’s problems require some blue sky thinking.

It has been made abundantly clear to me that I need a bigger bum.  Following bilateral hip replacement my glutes need building up.  The solution is quite simple: to walk in water as a simple strengthening exercise.  I haven’t been doing it lately and am paying the price.  It is the same for the pain in my left shoulder: I  haven’t made the time to do the exercise my physiotherapist recommended.  There is a simple solution to get rid my pain; return to the Leisure Centre on a regular basis and resume my exercise routines.  The solution for Maureen is not so obvious.

There were times yesterday when I felt completely impotent to help with her discomfort.  None of the normal remedies worked and her distress continued.  At one time I had to beg my sobbing wife to come out of the bathroom, so I could at least give her a hug.  All her clothing seems tight at the moment, and even extending certain garments has not helped.  It’s now time to put these issues before people who know Maureen.

Chloe, Girl Friday, will be here soon and she may be able to suggest a way forward.   She has significant experience of working with those who have had stroke, followed by dementia.   I will also run the issue by our social worker, and Admiral Nurse.  Hopefully this will lead to something that could just relieve considerable distress at various times during the day.  Just to be able to get  through the day with clothes that feel comfortable, would be a real game changer for Maureen.

Footnote: Today has to be ‘Fish and Chip Friday’ – home cooked of course!

Dementia: Good News

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There is no doubt that there continues to be a very positive response to the concerns I have raised about shortcomings in the support we have received from social services. To be quite honest I could not have asked for any more.  The outstanding issues have been referred to a Senior Practitioner and our new social worker is a breath of fresh air.  So I am optimistic that we are now on a positive footing, and am confident that things will move forward when we meet along with the Admiral Nurse on Monday.

The not so good news: I am getting up extremely early in the morning.  This is because I am accompanying Maureen to bed rather early in the evening as I am trying to avoid a repetition of the screaming  episodes when I join her in bed and she doesn’t know who I am.  The next step is to doze, along with Maureen, during the day to prevent exhaustion setting in.

Dementia: What About Me (2)?

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This is the second time today I have reblogged a post, and this time it is from just over a week ago.  It is reassuring that I have a joint meeting with my Admiral Nurse and our social worker on Monday morning.  This will be an opportunity to move forward on the issues I outlined below:

Dementia: What About Me?

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It’s early in the morning once again.  I have woken myself up this time, no-one else is to blame.  Maureen is sleeping peacefully, thank goodness, and my mind is active far too early in the morning.  With a meeting with my Admiral Nurse  this morning and my social worker tomorrow I am trying to clarify my thinking about my aspirations.  Put quite simply it is that I want to be more than a Care Partner.

There are some people who almost brag about their total devotion to their loved one.  Any perusal of Talking Point will reveal harrowing tales of endless struggle, and acceptance of an impossible burden.  Often the marriage contract is used to justify heroic struggle, even when the odds are stacked heavily against the Care Partner.  I do not believe Maureen would expect that of me or me of her.

There are lines in the sand in our relationship, and our love is not based on evidence of self scarifice.  In fact I have often heard Maureen hint, and even say: ‘if this is becoming too much for you, put me in a Care Home’.  That is a measure of Maureen’s love: she would endure facing her worste nightmare rather than feel she was spoiling my life.

I have already outlined my thinking on being more than a Care Partner in The Way Ahead.

Once I have crossed the bridge of a Carers’ Assessment I will be a better Care Partner for Maureen. Quite simply, because I will become myself again.  It’s such a shame that this process has been postponed so many times.