Tag Archives: Tiredness

Dementia:The Importance Of Teamwork

General,

One of the things I am keen to develop is a team approach to Maureen’s care.  I’m trying to work very closely with Chloe, and Gail, our regular carers.  In the last week we have drafted some guidelines for occasions when one of their colleagues have to step in. New faces at our door need some ‘handy-hints’ if their sits are to be effective: scanning a Support Plan as soon as they enter the house is not the best introduction to Maureen.

Myself, Chloe, and Gail, are the only people who see Maureen in action: we see beyond the confabulations that others receive.  We see Maureen’s increased level of confusion: making a cup of tea, and then forgetting it is brewing, so making another.  We experience the difficulty in getting her to shower or take  exercise.

I managed to chat to Chloe yesterday about Maureen’s reluctance to go to bed, and wanting to get up very early in the morning.  Both of us are familiar with Maureen lacking any concept of time: when it is dark she no longer has any idea if it is early morning or evening.  Whenever she wakes up from ‘resting her eyes’ she thinks it’s morning, and is expecting breakfast.  Chloe is aware of the shortcomings of a sleep deprived Care Partner.  I am concerned that carer burn-out will lead to an inability to look after Maureen.  We both agreed that something needed to be done to try to regulate Maureen’s sleep pattern so I can get more rest.

Following my discussions with Chloe I made a few changes in yesterday’s routine.  Firstly, I went out for a couple of hours in the morning.  I made the Leisure Centre for an hour, and had a relaxing time in the Spa, and Sauna.  This gave me some time to think on how to change one or two things at home.  On my return I noticed that Chloe had managed a ‘Pamper Day’ and Maureen looked spick and span.  She told me later that she had told ‘love lies’ about not being here next week, to get Maureen into the shower.  After Chloe had gone I set about changing our routines.

I deliberately served meals later, and encouraged ‘eye resting’ at different times.  The evening meal was served later; ensuring that Maureen was awake beyond 8 pm.  I parked myself beside Maureen on the sofa to prevent her from lying down. None of this went down well and my disgruntled wife picked at her food pouring scorn on the efforts of the chef: lots of it remained on her plate.  As always it was a battle to persuade her that she needed to take her blood thinner but I persevered.  Around 9.30 Maureen took herself to bed declaring she wanted to sleep alone.  I gave her ten minutes and joined her upstairs to support her bedtime rituals.

At almost 11pm I slipped into bed beside her, and wished her goodnight.  We slept relatively soundly together, and I got up 7 hours later to make early morning tea.  As I post this blog Maureen is still in the land of nod.  Her tea has gone cold: I will drink it later or use it as plant food.

More of the same today me thinks.  The one adage in being a Care Partner that always holds: if something doesn’t work try something else.  When I think of it that comes from Eric Berne’s ideas on transaction analysis’.

Dementia: Dealing With The Hangover

General

We were both  hung over yeaterday after partying early into the morning .  Maureen was able to sleep it off by going back to bed at 7.30 am but I had a morning acupuncture appointment so I couldn’t join her.

Alison was sticking needles into me just before 9 am, for some real complimentary therapy. As she sorted out where to place the needles we continued our conversation of the previous week about dementia.

As a complimentary therapist Alison always steers the conversation in a personal direction, as she treats the whole person.  She knew that her question about how are you doing would lead to me talking about my role as a Care Partner.  As her dad had recently been diagnosed with dementia, we had a two-way conversation rather than me receiving counselling.

When I returned home Maureen was still sleeping off her hangover.  That gave me an opportunity to chat with Gail when she arrived for the carer sit.   We sat and had toast and tea together for a while. I gave Gail a catch up on how things had been in the last week.  I also showed her Chloe her colleague’s notes on how she cares for Maureen.  Gail added a further couple of sentences to Chloe’s work, so we now have guidelines for new faces when our regulars are not available.

The dedication of Chloe and Gail never ceases to impress me.  They treat Maureen  as a relative that they are very fond of indeed.  I couldn’t fault their approach to supporting us both: they are incredible.  As we can go weeks without a knock at the door, with a friendly face wanting to come in, they are so important to our lives.  Hence I have back-tracked over our discussions with our social worker last week, and want to continue with the current arrangements of carer sits for nine hours a week.

We both dozed at several periods in the day, to try to catch up with our sleep deficit form ‘partying’ the night before.  Maureen ‘packed for home’ on a couple of occasions.  The holiday was over from her point of view: ‘it’s time to go home, next time we’ll stay in a hotel’  She said this as I dragged her way from the kitchen sink exhausted from her efforts.  Her assertion was quite understandable: she often came to Cleethorpes on holiday after her parents moved back to Nottingham.

One final point from yesterday we sang a lot during the day to some of our favourites. We also developed a new game singing silly songs as you will see on my Good Music page.  Maureen has really taken to singing and often mentions how good it is for us to launch into song.  She is singing ‘Remember Me’ now: I will be always eternally grateful to Tom Schuller, and Kate Swaffer, for pointing me in the direction of the work of Oliver Sacks!

 

 

 

Dementia: I’m Exhausted From Being A Care Partner

General, ,

Yesterday turned out to be a very challenging day and I’m now physically, and emotionally, exhausted.  Being up from 3 am is not the best start to anyone’s day.  Then at 1pm Maureen went on the attack following me leaving her with our carer, while I went out in ‘her car’.  Later in the afternoon there were lots of tears about not knowing where she was, and the things she can no longer do.  I spent a large part of the afternoon assuring Maureen ‘that they couldn’t split us up, and I would be by her side until death us do part’.  Towards the end of the evening all hell was let loose, as Maureen turned on me.Image result for I'm Exhausted Graphic

No-one could sustain the amount of effort that is now needed to give Maureen the support she needs at the moment. The time I spend just trying to keep her settled means that I hardly have a life of my own.  Just joining in with the hunts to find missing (‘stolen’) gear takes up an extraordinary amount of time.  If I’m not on the ball she can wander off looking for me, even when I’m another room.  Her emotional needs are exceptional, and can be totally consuming.

At around 9.30 pm yesterday evening Maureen decided that I wasn’t her husband: he had gone out. She thought he might have been upstairs; so she went to look for him (me). Maureen became so distraught, with a strange man in the house (me) that I asked Kate our neighbour to come round to try to reassure her.  Unfortunately, this didn’t make any difference.

Shortly after Kate left, Maureen became very hostile; making all sorts of accusations.  She was completely taken with my ‘game plan’ of ‘taking over the house, her car and all our belongings’.  It was after 11 pm before Maureen went to bed, and I took refuge in the spare room.  Just before she turned in she said, with anger: ‘you don’t care about me at all, you are just trying to take everything but my children won’t let that happen’.  I have never seen her quite like this before I don’t think she realised who was the audience for her outbursts.

At 4am this morning I could here her moaning in the marital bedroom.    I entered the room cautiously, and she said ‘she had been talking to the man’.  I settled her with; a drink,  a tablet for her sore mouth, and joined her in bed.  It didn’t take longer to ‘nurse’ her back to sleep.  She is well away now while I’m typing, and trying to collect my thoughts.

Maureen has awoken a couple of times in the last hour.  She is wanting to tell me about the events of last night concerning the strange man, who said he was her husband.  The man she is talking about is that Paul (me) who worked with her in Coventry.  She is very frightened and is seeking continual reassurance but wanting to tell me things in case she forgets them.  When I look back I made many mistakes last night as I tried to ground her: exhausted Care Partners all struggle to make the right interventions!

Fortunately, Sue our social worker will be here at 11 am this morning for a routine call.  Sue’s assessment is that Maureen has capacity, and if she doesn’t want to be left with carers we have no right to force such arrangements upon her.  Unfortunately, all Sue has to go on is what she sees, and hears, in her occasional visit. It would be difficult for anyone to see much beyond the ‘hostess mode’ that Maureen perfects when professionals call.  Therefore, her functional capacity and ‘out of character’ behaviour are kept well- hidden from professional staff.

The immediate priority is to help Maureen settle down, and re-establish domestic bliss.  I think it is an opportune moment to seek a Case Conference to consider Maureen’s presentation, and my responses as a Care Partner.  In the interim period there are a number of measures that need to be in the pipeline:

  1. To check for UTI or other type of infection.
  2. ‘Maureen’s car’ to remain on the drive unless she is going out in it.
  3. To review carer sits: nature and frequency
  4. To encourage Maureen to take more exercise.
  5. To try to entice Maureen into new activities: particularly in the evening.
  6. To organise carer respite, possibly overnight, ASAP.
  7. To reduce pain in my limbs, and left shoulder.

 

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Dementia: ‘This Is Not Sustainable’

General,

Sometimes it takes a stark comment from someone else to help you take a reality check on a situation I was recounting to Maureen’s youngest son that I was following her down the road after she had just told me: ‘I’m going to go out and look for Paul’, when he commented: ‘this is not sustainable’.  He makes a fair point: I need additional support to cope with Maureen’s current presentation.

Three, three hour carer sits is no longer adequate as Maureen’s condition continues to take a turn for the worse.  We have no idea if this a temporary dip or further decline.  The positive thing is that Sue, our social worker recognises the need for flexibility in our Support Plan. It hasn’t helped this week that Christmas Day deprived us of carer attendance, and New Year’s Day is likely to do the same.

As today is a Bank Holiday I have to tough it out until Tuesday. Thankfully I have some help today.  There is so much going on at the moment that it is difficult to know what to do for the best.  One thing that appears to be happening is that Maureen’s confusion is now frightening  her.  It’s no longer just a question of her not knowing who I am: she is now frightened by her poor memory.

Yesterday evening she broke down as she told me of her fears of strange men in the house, who are continually trying to get into bed with her.  She said these fears arose when she was in hospital, when she heard groups of men discussing their plans to get into the beds of confused women.   Her recollection was of men suggesting that they could tell medicated females they were their husbands’, and be able to take advantage of their confused states.  A little later on she admitted that she was often unsure which Paul I was out of the ‘teacher’, and her ‘husband’.

Early this morning Maureen has woken up distraught, once again, that she is late for school .   I tried to settle her with a drink, and gathered following an enquiry about the state of her sore mouth that she didn’t see me as her ‘husband’.  I therefore, retired to the spare room.  At 2 am Maureen is up and about tidying up in the marital bedroom: it looks like another long day.  The good thing is she is taking the benefits of being bilingual seriously, and singing a song in French about a cuckoo in the forest.

I plan to be on the phone on Tuesday morning to both my Admiral Nurse, and our social worker to discuss Maureen’s presentation.  Listening to Willie Nelson  helps, and lots of other strategies keep us ticking along but Maureen’s behaviour continues to be extremely challenging.  Confusion about day and night has been around for a while but early morning wakening is now creating unhealthy sleep patterns.  More is needed on several fronts to minimise Maureen’s distress, and I need additional support reduce the chances of Care Partner burnout.  This is  an unforgiving journey and we are fortunate that we now being supported by a social worker who is a dementia specialist.

Dementia: Pot Calling the Kettle Black

General

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: Facing Carer-Burn Out?

General,

This will be a very short post as I need to see my G P this morning.  I need some advice to help me improve my sleep pattern.  Although when your wife is confused over time that does not help.  Poertry recitals at 4 am in the morning are pleasant but not if it is difficult to get back to sleep afterwards.  One of my tasks this morning is to help Maureen trace the remaining verses of:  ‘I Remember’ or whatever it was she wanted to recite well before dawn.

My other problem is, once again, my digestive tract .  My saliva contained rather a lot of blood this morning.  I have to confess as soon as this, ongoing problem, goes away I forget to take the Gaviscon that was prescribed  a some time ago.

As I have mentioned before our Medical Centre has an excellent system for triage, and appointments.  It is reassuring that I know I will be seen this morning.  It looks like my body is trying to tell me something and significant carer burn-out is looming unless something is done pretty soon.

Dementia: No More ‘Pussy-Footing’ Around

General, ,

I am going to try another approach to getting some time off -respite- from my role as a Care Partner.  It is two months since I had a break, and then it took a threat to abandon Maureen before I got a chance to visit my family in Coventry.  This time I have given far more notice of my plans.

In the past my opportunities for organised respite have often been frustrated.  On occasions I have been let down at the last minute, and had to cancel travel and hotel bookings.  This has left me frustrated, and out of pocket.  It has also led to disappointment for family members who are beginning to question their status in my life.  I fully understand their concern, and upset.

Social services now have a couple more weeks to sort out Maureen’s care in my absence.  They will have to agree with her what is needed while I’m away from home.  I need a break, and to see members of my own family.  I plan to take my time off: it’s social services responsibility to ensure Maureen is cared for in my absence.

I look forward to receiving details of the arrangements that will be made while I’m away from home.  I will take legal advice if I feel the inaction of social services put Maureen’s or my welfare at risk.  I can see no other way forward.  I’m absolutely fed up with social services and our Care Agency passing the buck, and care not being available.  This ‘pussy-footing’ around needs to come to an end.

This is an early morning post because  we went to bed early.  I will be blogging about that, and Maureen going missing once again, later today

Dementia: Cold Causes Cancellation of Carers’ Assessment

General

I received an E Mail from our social worker last night informing me she has a heavy cold.  Therefore, I have called off the meeting to discuss my Carers’ Assessment.  I can’t risk passing on an infection to Maureen as that would make her dementia worse.  My request for respite, so I can visit family, will now be dealt with via E mail this morning.

This is the third, or fourth, time this meeting has been postponed.  I’d better keep my poor memory on this quiet, or they might refer me to the Memory Clinic.  I wonder if that is why I keep counting back from a 100 in 7’s and looking at the calendar?  Best to be prepared; to  have  answers ready in case I am if I am referred for memory testing.

One of the beauties of blogging is allowing yourself a bit of humour now and again.  What isn’t funny is I haven’t seen my mum, and family in Coventry for a couple of months.  I feel bad about this as I can recall reassuring my dad that I would do my best, along with my sisters and brother, to look after mum.  I remember making this promise as he lay on his hospital bed approaching the end.   The photograph below is the last one taken of mum and dad together.

Featured image

I can imagine what dad would say about the delays in my  Carers’ Assessment.   He would wonder why another social worker can’t progress matters.  Dad spent his life working in the motor industry; where illness, and problems with phones, would never have delayed production.

Dad retired well before computers made communication somewhat easier.  In his role as a Senior Foreman, at British Leyland, he never had the luxury of New Technology at his finger tips.  What he had in abundance was compassion for his work force.   I worked on the shop floor of the same factory as dad: I knew his ‘men’; I witnessed their respect for a compassionate manager; they were proud to hit production targets;  I was proud to be known as Jack’s Lad.

It will be interesting to see if new technology and compassion can work in my favour this morning.  Dad will know that I will keep my promise to help to ‘look after mum’.  He knows I won’t put up with this ‘pussy footing’ around for much longer.  He often talked of the shop floor of the car industry as the ‘University of Life’:  a place where you learned how to look after yourself.  The time may well be approaching to dust down those old overalls, and call for assistance in securing my right to a Carers’ Assessment.  I can’t continue to put my health and Maureen’s welfare at risk.  The consequences of carer burnout are well documented, and result in a little more than a cold.

Dementia: ‘What’s The Plan Action Man?’

General,

Maureen has often posed the above question to me in the timewe have been together.  It’s her catch phrase for checking what fancy doing on any particular day.  She is one of the most  amenable people I have ever met, and generally goes along with my suggestions about how we should spend our day.

Action Man now has to consider how Action Woman is on the day.   She has never been one for getting up in the morning and jetting off on a late availability holiday.  Maureen likes to plan ahead, and work to lists so, nothing is forgotten when you arrive in the sun.  So if a holiday is booked planning and packing are done well in advance.

It’s a lovely sunny day here in Cleethorpes, so it looks unlikely that the weather will restrict our options.  It is more likely that energy levels will have to be taken into account, after our early morning start to the day. Staying local may be the best option; with a walk on the prom and the beach.  As Autumn arrives we need to make the best of what might be an Indian Summer, because it may not last long.

As always I will fly a couple of kites: two stand at the ready in the garage if the wind gets up. Metaphorically speaking; I will also continue to put another couple of ideas into the sea breeze. Swimming, and ballroom dancing, seem worth trying to get off the ground – so best float them up there.  I’ll keep you posted on progress…….

Dementia: The Importance of Staying Positive

General,

If I don’t live by the graphic on the right things are going to get really difficult here.  My appointment with the social worker, to review my Carers’ Assessment, has been postponed yet again.  Therefore, we remain saddled with a Care Package that is totally unrelated to Maureen’s presentation.

It is rather difficult to progress anything without the social worker’s blessing.  So all I can do at the moment is tread water and try to cope.

What I have to ensure is that my tiredness, and irritation, is not picked up by Maureen.  It is time to keep a smile on my face and tough it out over the weekend.  I will need to focus on working with staff at the new Care Agency on Monday when they take over the reigns.

We are fortunate that Maureen’s youngest son will be here on Sunday.  He has an incisive mind, and a balanced approach to things.  He couldn’t be coming at a better time.  We need wise counsel before we take our next next steps on our journey with dementia.