Tag Archives: Respite

Dementia: Respite At Last!

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We all gave it our best shot yesterday morning trying to persuade Maureen to go into Ashgrove Care Home.  Gary our social worker, Gail our carer along with myself talked the talk but her arguments for staying at home from the day before were repeated.  Just as we were about to call for support from the Home Treatment Team Gary suggested that I could just ‘rock up and drop her off’ telling a ‘Love Lie’ that we were just popping into Ashgrove for a cup of coffee.

Gail and I took Maureen for a walk around Cleethorpes Country Park and popped into Ashgrove on the way back.  Once we were inside staff were primed to settle Maureen so Gail and I could beat a hasty retreat.

Maureen will stay in Ashgrove initially for a week .  I will not visit during that time as I know they will contact me if needed.

My priority during this break is to attempt to sort out my sleep pattern.  I have decided to do this by sleeping in my own bed rather than visit Madyhamaka Buddhist Meditation Centre.

Last night it was  strange being in the house without Maureen.  Music added a feeling of familiarity to my surroundings.   When  I played the first side of The Sound of Music I could have sworn I heard my ‘Singer Lady’ holding forth.  Once I sat down to eat I counted my blessings for the excellent support I had received from professional staff and family members throughout a challenging day.  As I stared at the empty place next to me I  knew that the means justified the ends: Maureen would be well cared for and I would get the rest I needed.

Just for a change, I have updated my Good Music page on time today.  With  Remembrance Sunday around the corner there one contender. I will always be grateful to Izzy, one of my many friends from my days on Talking Point, for making me aware of this song.

 

Dementia: Refusing To Go Into A Care Home

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Image result for I WANT TO STAY IN MY HOME DEMENTIA PICTUREMaureen asserted throughout yesterday her right to remain at home.  Despite various attempts to ease her into Ashgrove Care Home, she was adamant that she wanted to stay in her own home.  As she said: ‘I’ve done nothing wrong, I’m not a criminal: you can’t make me go anywhere’.  She also said that if I was struggling to sleep, I was the one who needed help and should move out to allow her own family to look after her.

There is no doubt that Maureen remains a very intelligent woman, able to use logic and rational thought.  Her arguments for staying in her own home were perfectly  understandable considering her experience of Care Homes.  I had to remove her from Ladysmith Road bruised and broken on her birthday.  She escaped from Royal Court and Ashgrove as she hates being locked in anywhere.  Her faltering short-term memory means that she can’t remember the details of her incarceration but the scars are there in her emotional memory.

Maureen was afraid to go into a deep sleep last night for fear of being taken away.  She is now worried if I’m out of sight.  Therefore, we have to be very careful this morning to ensure that our next moves don’t push her over the edge.  Despite being exhausted I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Although I’m exhausted and would love to be enjoying planned respite, I intend to help Maureen hold the line on staying in her own home.  There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.

Gary our social worker will be here this morning.  It is his turn to try to move things forward.   Sue from the Home Treatment Team could get no change out of Maureen yesterday, despite her success a few weeks ago.  After more than half an hour she recommended backing off to avoid further distress. As Sue left, she commented how much Maureen had deteriorated  since her last visit: don’t I know it!

Dementia: What A Difference A Day Makes

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Twenty four hours on from finding Maureen in despair in Ashgrove Care Home she was singing and dancing along with Bing Crosby.  She astounded me as she sang along to most of the numbers on a double LP – amazing value at 50 pence from a local charity shop.

This morning she was empathizing with me for being exploited by the owners of this ‘Care Home’ – who she feels are making lots of money from my good nature.  I have assured her it doesn’t matter to me as I enjoy looking after her.

You will gather I’m a great believer in accepting Maureen’s reality, and stretching a point  to keep things on an even keel.  It is easier to go along with the extremes of Maureen’s presentation when I have energy, and I now have a ‘insurance policy’ to call on whenever Carer Burnout threatens: Ashgrove Care Home.

When I called at Ashgrove yesterday morning to collect one or two things we had left behind, I was greeted with a resounding message: ‘Maureen is welcome back at any time’. How reassuring that I now have a safety net on our doorstep that I can utilise at short notice whenever I need a period of respite.

I have mentioned on many occasions that we are relatively well served with support in our neck of the woods.  To have found a local Care Home of such quality  is good fortune indeed.  Maureen’s feelings about the place are ambivalent ranging from: ‘never wanting to go back there again’; to saying she would be ‘better off back in hospital as there is always someone looking after you there’.

Edit:

Maureen thinks Ashgrove was hospital just as she frequently thinks our house is a Care Home!

Dementia: ‘Just What The Doctor Ordered’

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I journeyed over 200 hundred miles yesterday to hear a common plea from my mum and wife: ‘can you get me out of here’.  It didn’t take me long to consider both situations and  to heed their desperate pleas for help.

Following our usual run to Coombe Park and sharing an ice cream mum was happy to go back to Elm Farm Care Home.  She told me how much she had enjoyed her escape into the outside world for a little over an hour.  As always I told her that her ‘little boy’ would be back soon and resisted the temptation to reassure her once again that I had a woman (wife) to look after me back home.

There wasn’t a great deal of conversation while I was with mum; she doesn’t have a lot to say these days.  I resisted the temptation to give her news of her eldest son.  She wouldn’t have coped well with the news that I’d found him fast asleep in his Nursing Home: comatose in the later stages of Alzheimer’s.

Maureen looked forlorn when I found her in the evening – sitting alone at a dining table in Ashgrove Care Home.  She broke down when she saw me as she thought: ‘I’d abandoned her there for the rest of her life’. It took me half an hour to arrange the second breakout of the day.and bring Maureen home.

As I am writing I’m also trying to deal with Maureen’s reaction to being here: ‘this is not home’ – where she wants to be!   I fully understand that I will continue to pay the price for ‘dumping her in a Care Home’.  However, that is a price worth paying for much-needed respite:  just what the: doctor, Admiral Nurse, social worker, and the Home Treatment Team ordered!’.

 

Dementia: I’m Exhausted From Being A Care Partner

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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: Facing Carer-Burn Out?

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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: Champions League Winner!

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Maureen’s achievenment in making it to Nottingham, is equivalent to her beloved Reds winning the Champions League. What better way to celebrate her winning performance than a picture of her alongside a replica of the trophy taken during our visit to the City Ground yesterday . I had already awarded her a Platinum Medal for her performance in the early rounds of our trip south.  Now there is further adulation for her outstanding performance during our vist to the East Midlands.

Her achievement is remarkable when you consider she had so little preparation for the trip south.  Following stroke, eighteen months, ago she has not felt able to venture much further than Immingham, and that was for a visit to the Memory Clinic.  She has found travelling in the car very tiring; possibly on account of her 50% loss of peripheral vision.  Also her energy levels have fluctuated so much that on ‘duvet days’  she is hardly able to make it out of the bedroom.

Maureen opened the door to a trip to Nottingham by her comments on Wednesday morning.  She told me that she felt so much better that she wondered if she could go to see some members of her family in Nottingham.  I suggested that we could perhaps make it a day out or even an overnight stay.  Shortly after noon we were on our way.  The journey was far from straightforward, as I missed a turning and extended our journey time by half an hour.

As soon as we arrived at her brother’s I knew we were onto a winner.  When Barrie and Maureen get together their closeness is lovely to see.  I couldn’t recognise my wife from the tired, and listless woman, that often bases herself on the sofa.  In fact,I had to cajole her to go to bed well beyond our normal time for retiring.  The next day she was much the same enjoying visiting her old haunts.

I am not ‘spinning’ here to avoid the complications of the trip south.  On occasions it was painful to watch Maureen in new surroundings: she struggled all the time we were at her brother’s to find her way around his bungalow  What I am dwelling on is Maureen’s herculean effort to ‘hang on in there’ and make the best of our visit to Nottingham.  That is why she has her award: she deserves it.

When she phoned her brother to thank him for his hospitality, the emotion in her voice was palpable.  I suspect this is because she may have thought she would never see Notingham again.  It is possible that she may well prefer to stay local from now on.   As I have said before I do not consider my role is to encourage her out of her comfort zone.  She certainly doesn’t need to go chasing around the country to please others.   We are quite capable of  developing all the cognitive stimulation she needs here in Cuddly Cleethorpes.  To quote from the words of the Sky Blue Song: ‘while we sing together we will never lose’.  Did I ever mention my team is Coventry City ?  ‘Come on you Reds’; indeed!

Dementia: The Dynamic Duo

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I would want to commend our social worker on the way she handled her visit yesterday.  She contacted us in the morning and agreed to call after lunch.  The prospect of her visit led to considerable anxiety on Maureen’s behalf.  She thought that her liberty was at risk, and the social worker was aiming to put her in a Care Home.

I spent a large part of the morning assuring Maureen that we would be remaining together, in our own home.  However, she kept going back to Tracey’s last visit; where she thought attempts were being made to ‘catch her out’.  She kept returning to the theme of ‘being frightened’ and the social worker’s need to explore this issue.  Maureen said : ‘I think she was trying to see if I was frightened of you’.

It soon became clear that no matter what I said Maureen was ‘frightened’ by the prospect of our visitor at 2.30 in the afternoon.  I alerted the social worker in a brief E mail that I would try to phone her; about the risks associated with her visiting without an update on Maureen’s presentation.  Unfortunately, I couldn’t get to the phone to have a brief chat about things.  As a further attempt to cool things down I suggested a walk to get some sea air.

I deliberately elongated the walk,  to minimise thinking time once we returned home.  We were still eating omlette and chips when Tracey arrived.  My hosting role as ‘tea boy’ gave me an opportunity to ‘warn Tracey off’.  It’s amazing what you can communicate while taking a drinks order.  A nod, thumbs up, and a wink from Tracey was all that was needed.

Any video recording of what followed would have made a few bob as a training aid.  Tracey did the business in a sensitive way by taking a ‘rain check’ on things.   Bat Man and Robin couldn’t have done things any better by reassuring Maureen how well she is doing.   The issue my weekend away never surfaced. It’s amazing what a tea boy and a social worker can come up with in a few minutes together.

I am not sure if we are Pussy-Footing Around around, yet again, or working with Maureen’s mantra of: ‘slowly slowly catchee monkey’?  However, as a Trade Union Official once said to me: ‘Never mind the posturing: it’s outcomes that really matter’.

Dementia: The Only Way Is DIY

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Maureen woke at half past three this morning wondering if staff were on duty in this Care Home before dawn .  She wanted a cup of tea, because her mouth felt dry, and  was very pleased when I told her I would help as I knew where  things were.  I couldn’t leave her to her own devices anyway, as she often tries to boil the kettle without the lid on.  When we got out of bed she expressed concern that we might get into trouble for waking the other residents up. Then she said it didn’t matter as we were being kept here because: ‘they thought we were mad.’

It’s not surprisng Maureen is awake at this time of the morning; she went to bed very early last night.  It is possible that I woke her early this morning after visiting the bathroom.  She is now back in bed, with tea, and will have little difficulty going back to sleep. Unfortunately, once I am awake It is difficult to ‘switch off’ with my thoughts on ‘what next?’

I gave an early morning airing to the possibility of swimming during the next few days.  The initial response has not been positive, with concerns about the water in the pool being cold.  It could be I played my card too early.  I will return to this theme later and keep pushing out the boat until it is floating on the water.

My other predominant thought is getting to see my own family.  Scarlett a regular contributor to Talking Point asserts that DIY is the only way of making such things happen.  She shares her experiences as follows:

During my 12 year “journey” with John, along the Alzheimer’s path I learned

(a) Nobody phones you back when they say they will

(b) Appointments are cancelled at a moment’s notice, and rescheduled

(c) Then they’re cancelled again

(d) Social Workerss, et al, are constantly on annual leave, on a course, sick or at a meeting

(e) Don’t assume that once you’ve explained everything in great detail, and “someone” has been sitting in your home, writing notes – that’s it. Because …

(f) Every new person you encounter wants to carry out their own assessment

(g) Being stoic, and not bothering anyone, gets you nowhere

In the relatively short time that I have been a Care Partner my  experiences mirror Scarlett’s, and many others, from what I have read on Talking Point.  I simply have to grasp the nettle, and develop my DIY skills, if our journey with dementia is to progress in the right direction.

The only way I am going to be able to see my own family is to arrange the care that is needed for Maureen myself. That way I will not be depending on others; who may have other priorities.  The time has arrived to build a positive relationship with staff at the new Care Agency.

Dementia: What A Difference A Day Makes

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It’s 6 am on Sunday morning and we are both up with a spring in our step.  I have been up for a while tidying up one or two loose ends.  Maureen has just come down to seek her first cuppa of the day.  I know beauty is in the eye of the beholder but she looks ‘something else’ today.  The reason for both of us feeling good today is largely because Chloe was here yesterday for a couple of hours.

Our social worker managed to squeeze us another two hours of carer sits.  To get our ‘adopted daughter’ at such short notice was down to Michelle at the Care Agency.  When you consider that both parties are under considerable pressure I feel refreshed that they recognised the need for a compassionate response to my cry for help.  Such responses are really appreciated when the relentless pressure of being  Care Partner is grinding you down.  They both spotted a man on his knees and managed to pull out all the stops to help him stand a little easier.

Chloe breezed in with her normal matter of fact manner telling Maureen she had: ‘popped in because she was in the area’.  Within a short time she skilfully eased Maureen into the shower and things were underway.  This allowed me to pop out into the garden and sort out our vegetable patch.  Once the beans were down and in the compost bin, I put my head around the door to see the ‘hairdresser’  in action.  As Maureen says: ‘they are not allowed to cut as they are not trained to do hairdressing but they can wash and blow dry’.  Chloe is also an ace with the iron, the vacuum cleaner and all the other gadgets we use to make life a little easier.

When we ‘ran away’ to Cleethorpes all those years ago we never thought that we would get old one day.  Our respective children are scattered around the country; busy with their own lives.  Adopting Chloe has made such a difference to our lives and now we have further plans to add to our family.  Rosie is here on Wednesday again and she seems a likley candidate to help us fill a gap in our lives.  More like a granddaughter, as she is about to go off to University, but we can still see her at weekends if we play our cards right.  Extending our family in this way will make our house seem even more like a home.

With dementia you never know what any day will bring, yet there is room for optimism in this household today.  If we continue to turn our house into a home then there is no need to feel down that Autumn is on the horizon.  It is September the start of Term and another Academic Year.   It is up to us to make of it what we can.  Our subject matter that is absolutely clear: to live every day as if it is our last.  Thanks Kate for that one: