Tag Archives: Distress

Dementia: Going Back Home

General

We went back ‘home’ to Coventry for a day yesterday.  As we were both up early and the sun was shining we decided on a day out so that we could see my mother and brother.  When we arrived at mum’s Care Home she was having her weekly shampoo and set.  We didn’t have to wait long before she arrived in the visiting area but as it was close to her mid-day meal we agreed to pop back later to take her out for a short drive in the countryside.

John was being fed as we arrived at his Nursing Home.  He looked clean and tidy as he enjoyed being spoon fed his lunch.  Several of the other residents tried to interact with us in one way or another as we waited for him to finish his meal.  John didn’t give any indication that he knew who we were: rightly concentrating on one of the ‘lovely ladies’, as he used to call them, who look after him.

We drove around some familiar territory while we waited for my Mum’s Care Home to be open for visitors at 2.30 pm.  Maureen wasn’t sure if we were in Nottingham or Coventry some of the time.  I returned to the Close where we used to live a second time and Maureen had forgotten we had been there half an hour earlier.  On our second visit we called on some neighbours and spent a pleasant half an hour catching up.

Mum was sitting by herself when we arrived back at her Care home at 3pm.  We took her out for a short ride in the countryside calling in at Coombe Park for the traditional ’99’.  It was almost closing time for visitors when we got her back Home and we had to rush our farewells to avoid a reprimand.

Maureen had been in great form at both Homes interacting with residents and staff.  I thought she had rumbled my fraternisation with a 100 year old beauty at mum’s Care Home but Mrs A as she likes to be called was very discrete.  Mrs A tell me she will be 200 on her next birthday and I hope she will now invite us both to the party to cover out tracks.

The journey to and from Coventry was hard work.  On the way down Maureen moved from being hostile with all sorts of recriminations to hysteria: laughing from Leicester to Coventry.  On our return journey she was catatonic.  In retrospect I shouldn’t have taken advantage of her compassion: it was cruel to subject her to such an arduous day.  She paid a heavy price for her generosity at 2 am this morning.

‘Spark-out’ I had obviously not heard the Baby Monitor as she lay on the sofa.  When I made it downstairs she was cowering in the utility room saying: ‘you locked me in’.   She stood shaking for a while before I eased her back onto the sofa with the promise of a cup of tea.  My tiredness had left her exposed in return for her compassion: this must not happen again.  I think it is time to accept that travelling 250 miles in a day, with one driver, is no longer a sensible road for us to take on this journey.

 

Dementia: ‘What About Me?

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Dementia is giving Maureen an opportunity to ask ‘what about me?’  She is posing that question to me day after day.  What she is asserting is that in my hour of need she has always been there for me: totally devoted to helping me to recover from periods of being unwell.

Maureen is also asking the same questions of her family.  She says: ‘they don’t know where I am; have never been here; I can’t remember what some of them they look like’.  She is saying ‘I raised you and where are you when I need you’.

We are fortunate that we live in an area where the biomedical model for dealing with dementia has been consigned to the history books.  I witnessed first-hand the person centred model that is used here after I had summoned help from the Home Treatment team yesterday.  Amanda was walking down the road holding Maureen’s hand trying to console her.  Her colleague was talking to me at the end of our drive making the point that ‘we have to treat the person not the condition.  She is part of a team who see Maureen’s environment as key in her presentation.

Maureen gave me a wonderful hug at the end of a trying day for her: once again she was pleased that I was listening to her concerns.  Cleethorpes is a place of great sadness for her – our holiday romance at the sea side may need to be drawn to a close.  She sits on a sofa where her daughter fell into her arms and told her devastating news that her life was drawing to a close.  Her view as she thinks of Denise is through the ‘bars of her prison cell’ looking at Pat’s bungalow: a picture of sadness and loneliness.  She told me yesterday that she longs to walk down the familiar streets of Bell Green where we used to live in Coventry.

Maureen is not ‘Sundowning’ she is lonely and disappointed by the behaviour of others: including me.  She wants us close by in her hour of need: if I’m not in sight she is frightened.

Those who love Maureen can no longer afford to hide behind dementia being a progressive condition.  I am pleased that my wife has the courage to ask ‘what about me’ and she is already aware of my response.  Unfortunately, I cannot do this alone and other people need to step up to the plate and tell Maureen when they will be with her in her hour of need.

Postscript:  A brief note of thanks to all family members who sent messages of support yesterday: from the Midlands, Royal Albert Hall and North bound trains.  Things are hectic here at the moment all I can do is update you on my Blog.

 

Dementia: Looking Back: Looking Ahead (Week 22)

General,

Any perusal of this Blog will lead the reader to conclude the Maureen’s presentation is changing as is her personality: no surprise there dementia is a progressive condition.   Routine and consistency is the very thing she needs at the moment and it is conspicuous by its absence.  My suggestions on how we might improve things are listed below as bullet points:

  • Carers need to be consistent in their approach.
  • Carers need to meet to review their input and Maureen’s presentation.
  • I need to improve my sleep pattern.
  • We need to address the shortcomings of the biomedical model.
  • Family members need to increase their level of phone contact.
  • Family members need to schedule frequent visits.
  • My Blog becomes the vehicle for updating interested parties on Maureen’s presentation.

I am exhausted by the events of the weekend.  My sleep pattern is very poor putting my mental well-being at risk.  No-one could sustain my current level of input.  Improving the co-ordination between all parties would be a helpful step forward.

 

 

Dementia: Upsetting The Apple Cart

General,

 

It looks like taking Maureen back to her childhood home has upset the apple cart  and may not have been a good idea after all.  She slept for a long time after her morning of visiting familiar ground and busking.  In between she had periods of upset – wanting to go home.  There were times when she looked completely lost in her surroundings and I had to guide her where to go when it was time for lunch.  She also asked me ‘if I always ate in this cafe as the tea was not what she normally drank’.

She got really mixed up late evening when she went to make a cup of tea.  After she had been gone for a while I checked up on her progress in the kitchen.  She had made two cups of tea and asked if ‘I would take one in for grandad’. The England opening match in the European Championship failed to impress her and she was asleep again when Russia equalised.

Maureen awoke when I closed windows in the lounge as I prepared to go to bed.  She said she wanted to stay on the sofa as she was nice and comfortable.  She mentioned she was going to write to her mum about a shortage of blankets.  When I pulled her granddaughter’s quilt from behind the sofa she asked me where Maeve was.  When I told her Maeve was in Coventry she said she wanted to go to see her.

Around 11.30 pm I could heard Maureen wailing on the Baby Monitor.  I rushed downstairs to comfort her and she told me that she was ‘going to go back to Nottingham in the morning to live with her mum’.  I eventually got her to go upstairs but she noticed I hadn’t brought up her usual cup of water to keep her mouth moist if she woke during the night.  Unfortunately, I stayed in bed and let her go down to find a cup of water.  As she had been gone for a long time so I went down to see what she was doing.

It took me a while to find her as she’d opened the patio door and was standing in the garden.  She told me she was ‘looking for her mum’.  She then returned to our bedroom and shut the door.  I opened it cautiously and found her looking out of the window.  She told me that ‘a policeman across the road was now watching out for her car’.  I said ‘I was pleased’ and she got into bed fully clothed, as she often does, declining to get under the quilt preferring the comfort of a blanket that she has when she sleeps on the sofa.

Maureen was awake at 1.45 pm trying to make sense of things.  She told me ‘I was stupid for telling her that no-one else lived here’ as she wandered from room to room looking for other people. She then told me ‘to stop speaking in that silly American drawl’.  It took some time before she settled on sleeping downstairs on the sofa warning me ‘not to wake her’.  Unfortunately I had to get up then as the Baby Monitor was switched off and she has found out how to open the patio doors and get outside.  I’ll have to try to catch up on sleep during that day because I’ve had none tonight.

As I tidy up the kitchen at 4 am Maureen is on the move again.  She declines a cup of tea saying she’ll make one when she wants one.  Then she announces ‘there are crooks and there are crooks who steal from their friends’ as she marches about the house looking for something.  She addresses me as someone who works here rather than her husband.  Which reminds me when we came across the busker yesterday he was singing: ‘You Don’t Know Me’ – how profound and one of Willie’s numbers:

Maureen has taken the opportunity of occupying the marital bedroom while it is vacant. She has thrown my pillows out of the bed and is sleeping in a central position. It looks like I’d better retreat to the spare bedroom for a while as that deep seated fear of men in her bed has returned: we all know the origins of that concern.  How sad it is that when she sleeps alone she can wake at any time totally distraught; fearing she has been deserted and locked in the house. Fortunately, I’ve managed to make sure the Baby Monitor is switched on so I can be with her if the need arises.

At 5.45 Maureen is on the move gain looking for a cardigan that her mother embriodered for her.  This is something I’ve never heard of before and I think she means a cardigan that I recently bought for her.  I’m wrong again she is talking of the cover for the continental quilt that we bought some time ago which is on the bed inside out causing confusion.

Maureen woke again at 7.15 as I was having my first an hour of shuteye. She tells me she ‘just wants to get better’ and welcomed me lying beside her on our bed.  I hold her tight and eventually sing some silly songs which are warmly appreciated.  After I finish drafting this post(something I’ve beeen doing on and off for quite some time)  I’m on duty as ‘Tea Boy’ but my guess is she will be asleep before I reappear with the goods.

I’m worn by the events of the last 12 hours: it’s been relentless.  I plan  may to ask the Care Agency for a hour or two of carer time if it is the weekend that our regulars work.  I would guess professional advice, on Monday, will be to  call off plans to visit Coventry next weekend and try to ‘settle her’ as the saying goes.  It’s a miserable old day in Cleethorpes this morning so we will have an easy day not straying far from the house: which will probably never be home as far as Maureen is concerned!

Dementia: ‘Houston We Have A Problem’

General,

I can’t remember who said it in the missions to get to the moon but we have a problem in Cleethorpes this morning.  In fact we have three problems Maureen’s current presentation, my well-being and a shortage of personnel at ‘Mission Control’.

At 2pm Maureen became concerned about her car again: she is fixated that someone else is using it and not taking her out when they are enjoying the luxury of her motor.  She went off on her own hunting for children who had been playing in her car yesterday and returned half an hour later having forgotten why she had gone out for a walk.  I’m extremely grateful to Susan Macaulay for helping me to reconsider my position on ‘wandering’.  Sue our social worker has also gave me live telephone support on this matter yesterday.  I have no intention of locking Maureen in and will support her right to go for a walk on her own whenever I feel she is in the right mode to be safe.

A secondary problem is that I am racked with pain this morning and needed a hot shower to ease the pain in my shoulders and legs.   The further problem is that Mission Control is depleted this morning as two key personnel have gone AWOL today (not really).

I have now arrived at a point in this Blog where I started yesterday when I pressed the wrong button and released an early draft: I’m spoiled for choice with the level of support that is available to me as a Care Partner this morning.  Sue our social worker never works on Wednesday’s and Mel my Admiral Nurse is on a course in London.  Despite the unavailability of such key personnel I still have a number of professional staff I can turn to if  to chat over my next move.

Just by chance I have an appointment with Paul Martin my counsellor this morning and I will arrange to see Dr Munjal while I’m at Clee Medical Centre.  I need to chat through with them my ‘cunning plan’ to deal with Maureen’s car , wanting to go home and being reluctant to take medication..  If they had not been available I know I could have chatted to staff at the Home Treatment Team or walked a few streets away to be with with Yvonna the chemist at Lloyds.  I could also contact Angie a Carers’ Support Worker and take up an offer of meeting her to discuss how things are going.

When Maureen and I decided to move to Cleethorpes lots of people questioned our sanity.  In retrospect it may well have been a reckless decision to move away from all immediate family who all live over a 100 miles away.  What they, and we, didn’t realise at the time was the range of services here is exemplary and I would be surprised if any Care Partner enjoys the options for support that I have at my disposal this morning.  I had hoped to praise the set-up to support carers here through the channels of the  Academy of NHS Fabulous Stuff and the  Huffington Post  but I fear that may not happen as Maureen doesn’t want me out of her sight at the moment.

I have a number of ideas on how to try to resolve Maureen’s fixation on her car, wanting to go home and being deserted.  It is fortunate that we have a slow puncture in the front near side tyre.  I bet those wheel nuts will be so tight it will not be possible to put the spare on this morning.  How convenient the car can be immobilised for a few days.

Bob Marco asserts that accepting the ’emotional glue’ is a prerequisite to becoming a supportive Care Partner.  He argues that once you accept this sticky solution life returns for those who are on this unforgiving journey: simple solutions all round then!

Today’s Tasks

  • Immobilise Maureen’s car
  • Seek advice on Maureen’s presentation
  • Make dental appointments
  • Encourage Maureen and carer to empty the ironing basket
  • Continue de-cluttering the house
  • Refer family members to Blog for an update
  • Continue to explore moving home with Maureen
  • Potter in the garden
  • Fast during the day to address pain in limbs

Footnote:  I will forward this Blog to the Academy of Fabulous NHS Stuff and Huffington Post and hope  they spread the word of excellent support for carers in Cleethorpes.

 

Dementia: Looking Back: Looking Ahead (Week 21)

General, ,

Maureen and I had a lovely day out in Nottingham yesterday.  My suggestion that her brother needed cheering up raised my nurturing wife from her bed and we were on our way by 10 am.  Unfortunately, we had to return home 15 minutes later as I had topped up the car with petrol and left my wallet at home.  I also did my usual trick as we approached our destination and took a wrong turning which delayed our arrival even further.

Dianne, our sister in law, provided a beautiful lunch which eased our introduction to new surroundings.  It didn’t take me long to see that it had been worth an elongated journey on a hot day: brother and sister were soon back in the old routine.

After lunch we walked to a nearby park in beautiful sunshine.  Once again the siblings were chattering away as we made our way around a Vintage Car Show.  I was in my element as I stumbled across an Austin 1800 in mint condition and reminisced with the owner about my days on the shop-floor at British Leyland.

We decided to delay our departure from Nottingham until early evening when it was a little cooler.  Maureen was obviously very tired on the homeward journey but we continued with the banter that we had enjoyed on our way to Nottingham.  She took to the sofa shortly after we arrived home and was asleep almost as soon as she laid her head on a cushion.  Around 10.30 pm I managed to ease her upstairs to sleep alone as she wanted a bed to herself because she was too hot.

Maureen awoke at 1pm very distressed and confused about where she was.  Eventually she joined me in the spare room.  Two hours later she was awake again crying that ‘she was in a madhouse where she didn’t know who was in bed with her and she wanted to go home and be with people she knew in her family’.

At around 6 am we have had a very positive conversation about ‘going home’ and being closer to our loved ones.  Maureen has been a revelation saying ‘let’s not get carried away and rush into anything’.  It is lovely to see my wife firmly in control using her intellect to appraise our situation.  I wouldn’t be at all surprised if she didn’t outwit ‘Mrs Dementia’ one of these days and send her back to where she belongs: it might just be that there is something in ‘The P C Approach To Memory Loss’.

 

 

Dementia: What A Team!

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I would not have survived yesterday without significant help from friends (including cyber) professional staff, and family members.   It is possible that I will not have space to thank them all so apologies in advance if I fail to mention you!

My day got off to a good start when I met Ed one of my friends from the Buddhist Meditation Group.  Our chat for an hour or so helped me to understand the ‘message’ a little more.  Ed is such a generous man who is always prepared to meet me at the drop of an E Mail and fields my questions in a very helpful manner.  Like all good Buddhist we ended our chat by talking football as Ed is a ‘Town’ supporter and they have just got back into the Football League.

I returned home from the calm of Buddhism to the storm of Dementia.  Maureen was incensed that Gail her carer had stopped her from walking alone.  She vented her frustration at me for several hours and I had to trail her for well over an hour.  There is little point in repeating her recriminations or accusations: they are familiar tales in the dementia bubble.

During one of the intervals in the hostilities I sought advice from Mel my Admiral Nurse but failed to reach her.  Yvonne the Occupational Therapist who had declared Maureen unfit to wander was on holiday but I had a helpful chat with one of her colleagues about the practicalities of re assessment.   I also managed to reach Sue our social worker who provided excellent telephone support and reassured me that I was on the right track (the digital tracker is currently on charge).

I hoped that tea would move things in a new direction as the vegetarian burgers ended Maureen’s hunger strike and I anticipated all was fine and dandy.  Unfortunately the food may have hit one spot but opened another door and Mrs Dementia re -entered wondering ‘when her husband would come to pick her up’.  She asked me ‘if I could give her a lift home as her kids would be wanting their tea’.  Despite my best efforts I couldn’t help her to see that she was home: during her musings she mentioned Clarice, her aunty, and that opened a door in my thinking.

At a lull in the attack I slipped away to call Clarice with a cunning plan.  Half an hour later I dropped Maureen at Clarice’s where she could wait for ‘her husband’ to pick her up.  Once home again I spoke to Colin Maureen’s son on the phone to appraise him of developments.  He was very supportive and we chatted about contingency plans for my visit to Coventry in a couple of weeks.  Colin made some very helpful suggestions about Ian (his brother) and Barrie (his uncle) potential involvement in the arrangements to see my own family.

I returned to pick up Maureen an hour after I had dropped her off.  In my break from hostilities I completely change my outfit and deliberately wore a red fleece that belonged to Maureen.  Clarice was very tolerant of her niece and husband catching up on the latest news for half an hour or so.  When we returned home as Mr and Mrs Collins I manged to keep conversation on how Clarice was coping living by herself now she was widowed.

Maureen had clearly been frightened by Clarice’s plight and shared her fears about being left alone in a strange place.  She was pleased that ‘I wasn’t angry’ about her thoughts about ‘the need to move from the sea-side and go back home’.

I have managed to stay in bed for about 7 hours and recharge the batteries a little. Maureen has woken a couple of times and reopened a number of issues.  Her initial concern was about going back home.  Then she has moved onto her concerns about short-term memory loss.  Once again she claims that ‘no-one has told her how to get her memory back’ and I have gently contradicted her assertion.  This has not gone down particularly well and I hope I haven’t overplayed my hand.

I have never mentioned  Kate Swaffer to Maureen or Dominique Klotz who advised me to check her out.  I’m so fortunate that Paul Martin my counsellor suggested that blogging might be helpful to me as a Care Partner: as it has opened the door to neuroplasticity.  Kate continues to bang the drum about potential and just as Irving Kirsch was my route out of depression Kate’s has to be the guide on this journey.

I firmly believe that Maureen has the potential to regain her independence and wander safely at will.  It is possible for her to show us that she can cross roads safely and with the tracker in place can get safe help if she feels lost.  All she needs is patience from yours truly and she will prove to others that she is safe to wander.  Once we have overcome that little matter it may well be possible to encourage her to explore other opportunities to get her memory back.

Thank goodness that Lisa will be here with her husband and two beautiful daughters by noon.  We both need a day off and with luck we might make it to the circus together.

Jen one of my cyber friends uses her blog to show gratitude and we wouldn’t cope  without such a wonderful Team who have supported us to find our way on this journey. Once again sincere apologies to anyone who I have missed out on today’s post but you know who you are!

Please note:  I am short of time and have not provided any links to Kate Swaffer or Irving Kirsch on this post: they are well worth following up on Google.

Footnote:  I just couldn’t resist that photo.  Did I ever mention that Coventry City won the FA Cup in 1987?

Further Footnote: 8.15 am the attack continues with a vengeance that I have not seen before: another type of circus.  Where are the clowns?

Dementia: Time For Teepa (Snow)

General,

 

Yesterday was very challenging with marked fluctuations in Maureen’s presentation; particularly her mood.  She slept for most of the morning and just about raised herself from the sofa before Charlotte our carer left.  Clarice her aunty visited in the afternoon and I left them too it for an hour or so.

We gave Clarice a lift home calling in for some bedding plants on the way.  Maureen became very hostile as Clarice and I gathered up our purchases and attempted to round Maureen up from wandering in the vicinity of the retail outlet.

Maureen declined Clarice’s invitation to have a cup of tea at her house.  She wanted to accompany me to the wood yard to collect further items for repairing the fence.  The prospect of more work on the fence led Maureen to show her frustration and remonstrate about me repairing our neighbour’s fence.  It took a lot of time and patience to persuade Maureen get back in the car for the homeward journey.

Once home Maureen put her arms around me and thanked me for repairing the fence.  After our evening meal Maureen became very sad about wanting to go home and missing her family.  She was very distant for the remainder of the evening but surprisingly ‘livened up’ when we went to bed.

I think it is Teepa time again for yours truly.  Her explanation of vascular dementia might just help me to understand a little more what might be going on here.   Teepa also has some tips on how to handle wanting to go home and I’m hoping that I can find a post by Amazing Susan  so I can revisit this issue tomorrow. 

 

 

Dementia:Who Am I?

General

One of my most difficult tasks as Maureen’s Care Partner is working out who she thinks I am or alternatively who I am not at ceratin times of the day or night.  We had great fun for most of yesterday with an early morning stroll around a local Car Boot Sale to set us off on sound footing.  In the afternoon Maureen sang along beautifully to Anne Murray and many others as I kept the deck well supplied with vinyl.  We managed another walk early evening checking on the activities at nearby Holiday Centres.

On our return I scanned YouTube for an episode of Dinner Ladies and we both enjoyed seeing Victoria Wood and her fellow workers at their best.  I thought we had spent the day together as husband and wife until about 9 pm when Maureen asked me ‘to take her home to her husband’.  I was taken aback by her request and explained in a low key way that she was already at home.  Unfortunately, none of my attempts to help her grasp my reality worked until sleep rescued us both from a tricky situation.

Maureen woke after about half an hour dozing on the sofa and decided to go to bed.  I managed to sleep beside her and we had a relatively peaceful night with a couple of interruptions.  Around 4 am she muttered something about ‘making chips’ and a little later on was pleased with my reassurance that she didn’t need to ‘get ready for school’.

I decided to get up around 5 am and have a shower to try to ease discomfort in my shoulder and hips. As I walked across the landing after showering Maureen appeared looking startled and then saying ‘thank goodness it’s you’.  I quickly slipped into my ‘Tea Boy’ role to help her snuggle back down in the warmth of the bed.

As Paul Martin my counsellor often reminds me my main focus as a Care Partner is to seek to minimise distress.  It’s safe to be Maureen’s DJ or Tea Boy: it’s when I’m trying to be her husband that things become hairy.  However, there is one thing that we can both be today is supporters of the Grimsby Town who are at Wembley today in the play-offs.  We can both forget our respective loyalties to Coventry City and Nottingham Forest and support the ‘Mighty Mariners’ efforts to get back into the Football League.  The outcome of the match is as uncertain as whom Maureen thinks will be sitting beside her as we follow the fortunes of ‘Town’ this afternoon.

 

Dementia: Holding My Nerve

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The next hour or so is going to be very tricky but I simply have to attempt to hold my nerve after another difficult night.  Maureen has been up several times since we went to bed which is rather surprising after a busy day without any siestas.  She has been frightened during the night by her fears that there are animals in the house.  It has taken a lot of reassurance to get her back to sleep.

My coach leaves for Coventry just after 7 am and it is tempting to change my plans.  It wouldn’t be the first time I have postponed or cancelled visits to see my family but this time I need to keep to stay strong. Maureen will be well cared for in my absence and her son will be with her for a significant part of the day.  If I back off now my plans to develop a life of my own alongside being a care partner will be in tatters and the support I have received from professional staff will have been wasted.

As I finish this post I just wonder if it is worth trying to tempt Maureen to come with me and travel to Coventry by car.  I just wonder if I’m losing my nerve already or if this is a viable option?

Great news: what a brave wife I have we’re off together shortly!