Category Archives: General

Dementia: Up Before The Birds

General

Two favourite birds 001Maureen is up before the birds this morning: even her pet blackird, pictured right, is stiil sleeping at 2.30 am! Blackie as she calls him responds to her whistle, as he comes down to be fed.  He’s rather fond of grapes and sultanas: expect him to be involved in the dawn chorus any time now.  Well this early morning wakening rounds off a funny 12 hours or so.

Early yesterday afternoon I caught sight of Maureen in the bedroom, and had to smile at her outfit.  Her blue jumper was on back to front.  I could see  her pink P J bottoms peeping out from under her claret joggers. She had odd socks on, beneath a blue slipper on one foot, and a green rubber gardening shoe on the other.

After an early evening siesta she began to talk to me as if I was her dad.  She mentioned the things we had done together, and relatives I had never met.  This mistaken identity didn’t worry me too much as she seemed to feel very safe in the company of her ‘dad’.  When bedtime arrived she encouraged me to let her have a bedroom to herself.

I heard her moving around shortly after 2 am this morning saying she wanted a cup of tea.   As her behaviour with the kettle is uncertain I promptly joined her downstairs.  We have now been up for 5 hours listening, and singing, to some of our favourite music on YouTube.  So Blackie your mistress is singing before you this morning: Lazy Bones!

It’s now 7.40 am and Maureen has decided it’s time for bed: ‘as night is drawing in’.  I’ve reassured her that I will serve breakfast at the usual time.  She will sleep for a long time now, and I’ll go off to for my acupuncture appointment.

 

Dementia: A Step Towards Breaking The Cycle

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I think we made considerable progress yesterday with our plan to break the negative cycle of carer sits.  This is something that Sue, our social worker, had identified as something we needed to do.  Yesterday, Maureen and I planned things so that she didn’t feel that carers were here to ‘baby sit’ her, so I could go out and have fun.

Last Monday I made the mistake of scarpering almost as soon as Chloe, our carer, walked through the door.  I knew I had made a mistake when Maureen gave me the ‘cold shoulder’ as soon as I walked back in the house.  After all I had: ‘taken her car, gone out enjoying myself while she had been stuck in the house with Chloe’.  On it went for the rest of the day with real bitterness and hostility in the evening.

Yesterday morning was a lovely experience for us all.  We planned things in such a way that it was like having a visit from a helpful granddaughter.  Chloe and Maureen got on with household tasks, while I pottered around in the garden.  We took tea breaks together and had a lovely morning.

Around noon I prepared lunch as the women chatted away in the lounge.  At 1pm and we thanked Chloe for popping in to see us; knowing that she would be back on Friday.  Our afternoon siesta followed a hearty lunch, and the evening went almost to plan.

Around 9 pm Maureen was dropping off on the sofa, so we retired to bed shortly afterwards.  I deliberately tried to prevent her from sleeping downstairs, as that often results in difficulties when she wakes up not knowing where she is.

Planning and structuring our days with sensible routines is clearly the best way of achieving domestic harmony, with dementia around.  Yesterday was a small step towards breaking the cycle of Maureen’s reality being that: ‘I’m leaving her with carers so I can go off in her car and have fun by myself’.  My focus needs to be on minimising Maureen’s distress, and finding new ways of having fun together.

The other good thing about yesterday: Mel my, Admiral Nurse, responded to yesterday’s blog.  I knew she would and it’s good to see that my request for online support has kicked off.  It is so helpful to have comments on my review of the week: thanks Mel I really apprecaite your support!

 

 

 

Dementia: Looking Back (Week One)

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Starting from today; Monday’s blog will become a reflection on the previous seven days. It will be a sort of progress report for professional staff to comment, if they are able, on how things are going.

On Tuesday Sue our social worker called for a routine home visit.  She concluded that our current care arrangements are not working for us, and certain changes are in the pipeline.  The ‘Plan’ is to make ‘sits’ a part of Maureen’s recovery programme, and move them away from ‘baby sitting’.  Sue has forwarded a draft Support Plan which I am about to comment on.

On Wednesday I met with Paul my Counsellor.  Once again he alerted me to the fact that Maureen’s world is shrinking, and the need to minimise distress.  He also encouraged me to develop a life of my own, and not be totally consumed by my caring role.

Twice this week I have cajoled Maureen well outside her comfort zone:  a trip to Lidl on Thursday, and to Freeman Street Market on Saturday.  On both occasions she has seemed lost in unfamiliar surroundings.   All such outings are doing is reminding her of her poor memory, and causing distress.  I intend to avoid such outings for a while, and stay local.  There have been several times this week when Maureen has got lost in the house: struggling to find her way from one area to another .

Maureen’s presentation continues to fluctuate throughout the day.  Sometimes I am her rock and she couldn’t cope without me, at others I am the enemy within.  Yesterday evening was a prime example of my changing staus: after having fun dancing and singing to music whilst washing up she has ‘rested her eyes on the sofa’.  I  woke her gently at 10.30 pm, and she was reluctant to come to bed.  She mentioned that she ‘couldn’t go very far as I had taken her car’- it has been on the drive all day.

An hour later Maureen made her way upstairs.  She made it clearthat she wanted a bedroom to herself and will sort it out in the morning. As she preapred for sleep she is going on about all of her things being taken and never knowing where her car has gone. I retired to the spare room after a brief spell beside her in bed.

I find it difficult to sleep when hostility has surfaced  late at night.  My sleep pattern is poor at the moment with early morning wakening.  Despite acupuncture on Wednesday the pain in the rotator cuff in my left shoulder seems to be getting worse.  My legs are far from comfortable, with pain from tendons in both of my quads.  Therefore,I need to make the Leisure Centre to walk in water.

Our regular carers have been back on duty this week.  I managed to have a chat with Chloe on Friday, and she reports that Maureen is becoming increasingly confused.  She also says that Maureen is no longer concerned about her appearance, and is reluctant to shower.  We also discussed my forthcoming birthday, and how any change of scenery would only add to Maureen’s levels of confusion.  Chloe mentioned that Maureen resents my absence when I visit family, and feels that she would think I had left her if I was away from home for any length of time.  Looks like the celebration of my three score year and ten at the end of February will take place in Cleethorpes – Portugal is a pipe dream!

In closing I think it is worth outlining a few targets for the week:

  1. To try to ensure all medication is taken.
  2. To encourage Maureen to exercise four time a week, as recommended
  3. To try one new evening activity to replace watching T V.
  4. To leave the car on the drive unless Maureen is in it.
  5. To meditate every day.
  6. To visit the Leisure Centre twice (me).
  7. To follow the exercise regime for my shoulder.
  8. To try to build more fun into our lives.

 

Dementia: ‘Am I Going Mad?’

General,

I am convinced that we are all straying into very dangerous territory by not understanding Maureen’s reality.  Today’s post will reflect on my shortcomings in this area: tomorrow’s will deal with how significant others are having a similar problem.Image result for Am I Going Mad Graphic

My mistake is that I keep trying to take Maureen outside her comfort zone: I am creating discomfort rather than minimising it.  This point really came home to me early yesterday afternoon, when I dragged Maureen to Freeman Street Market.

When I look back the experience for Maureen must have been terrifying, and only served to remind her of her poor short-term memory.  I shudder when I think about how it must have felt to be in a strange place, with me chatting to people that she didn’t know: no wonder she often questions her sanity!

During my periods of depression I never realised how helpful this experience would become later in life.  It is fortunate that I met with Paul Martin my counsellor on Wednesday: something he said stopped me in my tracks.  He has always contended that my prime focus as Maureen’s Care Partner is to minimise distress.  However, he helped me to see that Maureen’s world is shrinking, and she needs the comfort of familiar surroundings.  Only the other day she said that she had ‘forgotten her way around our house’.  Sometimes she gets lost finding her way back to our bedroom, after a visit to the bathroom.

It has taken me a few days to let Paul’s message sink in: we need to stay local from now on. Local shops may be more expensive but we can no longer afford the distress that taking Maureen outside of her comfort zone causes.

When I think of my selfish thoughts about my forthcoming 70th birthday I cringe.  On what basis can I criticise the involvement of others in our lives, when I was thinking of us going to Portugal, to celebrate my three score years and ten?  Sometimes I think it is my sanity that is in question, rather than Maureen’s!

 

 

Dementia: Understanding Sensory Clues

General,

I have often sang the praises of Teepa Snow on this blog, and I want to spend time this weekend staying close to Maureen and thinking about her presentaion from the perspective of this article:

Dementia and Sensory Cues: Reading the 5 Senses to Understand People with Dementia
A Clinical Pearl by Teepa Snow, MS, OTR/L, FAOTA

Over the last ten years, I have done a lot of research, direct care, and education in dementia. I have learned a great deal about how people living with dementia navigate their world when challenged by the effects of a changing brain. The sensory system – what we see, hear, feel, smell, and taste – continuously takes in, processes, and uses data to help us understand and interact with the world. The challenges you might be experiencing with dementia patients are often a breakdown in the sensory system. So how can we help? Below, you will find a few lessons I’ve learned about observing the “cues” available to us that can improve our work as professional Care Partners.

Notice and Acknowledge

The first and most important step is to notice and acknowledge. If you take the time to observe, you can often discover the abilities a person living with dementia is actually working with at any given moment. If we understand more fully what someone can do, we can choose to support and care for them in a way that meets their needs. This begins with observations, not assumptions about what is happening.

Look for Sensory Cues

All human beings give clues and information about their ability through their interaction with others and the environment. Take an inventory for yourself by honestly observing and respecting how your patients are relating to the world through the five senses.

Visual cues

Observe: What is a person focused on? What do they see that might be different from what you are able to see?

“Visual cues” are a great tool. Vision is the preferred way for human beings to receive information. We like to see. Over time, dementia affects the brain’s occipital lobe impacting a person’s visual field and depth perception. As a result, a person literally may not know you are sitting next to them. They can’t see you, even though you can see them. If you are aware of this, you can move yourself into a person’s visual field before attempting to communicate or care for them.

Auditory cues

Observe: What do they respond to when you speak? Do they respond at all? A lack of response can also be a “cue” about ability in a particular moment.

Do they hear you? Did they actually process what you said? Are they giving you a response that suggests they understood? What is happening in their body that might tell you? Set your client and yourself up for success and look for a “cue” from them to confirm that what you think transpired actually did.

Consider other “cues” that may be helpful. What needs might someone be attempting to meet in their behavior? What are they saying or communicating with their actions?

Dementia affects all 5 senses

It’s important to understand and be aware that over time all 5 senses will change for a person living with dementia: visual abilities, auditory processing and comprehension ability (and please don’t confuse this with the hearing of sound as these are two different things), feeling ability (including touch sensation and the ability associated with motor skills), and the ability to smell and taste.

Everything changes experientially for a person living with dementia and this impacts their behavior, communication, and relationship with others. If we truly understand and are willing to observe their abilities and stretch ourselves by looking at what’s happening through the lens of curiosity, we can further understand and choose to support and care for others in ways that make more sense. These changes in perspective will improve relationships, set realistic goals for Care Partner interactions, and give the person living with dementia a greater sense of personal dignity and worth about their life.

Dementia: ‘We Have To Break The Cycle’

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On Tuesday when Sue our social worker was here she had a brief word with me after I had retired to the kitchen in frustration. She had gathered that I was a little fed up with Maureen going round in the same loop about me wanting to see mum.  Every time we tried to move things forward Maureen would try to divert us down a road to nowhere.  When Sue popped into the kitchen for a word she said: ‘we have to break the cycle’.  Her words are pertinent, and need to be extended throughout our approach to supporting Maureen.

There is no doubt that having Sue as our social worker has made a fundamental difference to our lives. As I have said before Sue exudes professionalism, and compassion: a fundamental difference from our previous experience of her Department.  I also realise, as my daughter Anna often reminds, me I have a tendency to be impatient: a shortcoming that is unhelpful when dementia is calling the tune.  Maureen’s adage of: ‘slowly slowly catchee monkey’ has to be my mantra: never mind my predisposition for getting things done.

If we are to ‘break the cycle’ we need to have strategies rather than plans with deadlines.  We need to help Maureen focus on what she can do, rather than concentrate on what she can’t.  We also need to have some sort of mechanism for keeping an eye on how things are going.  To start the ball rolling: from now on I will use Monday’s Blog as a review of the previous week.  This will provide an informal progress report, that I can forward to professional staff for comment. Looking back, and glimpsing a way forward, might just help us all to ‘break the cycle’.

Dementia: Performance Appraisal Needed

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One of the things I need in my role as Care Partner is on going feedback on my interventions.  If Maureen’s recovery from stroke, and dementia, is to be maximised a team approach is essential.  All team members need to have a mechanism for performance appraisal.

My participation in the Blogging 101 Course has challenged me to rethink the audience, and purpose, of this Blog.   It would really help to me if professional staff were able to use my Blog as a vehicle to comment, when appropriate, on my performance as a Care Partner.  On occasions I would like to forward certain Blogs to professional staff for comment.  I am not expecting our social worker, Admiral Nurse or G P to make their comments public: they can respond  privately by E Mail, when they have time.

I am hoping that this suggestion is helpful to us all.  It would give me supportive feedback, cut down on traffic, and keep meetings to a minimum.

Dementia: Less Is More

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I found the meeting with our social worker yesterday very reassuring.  It soon became clear that Sue is singing from the same hymn sheet as Maureen and I.  She had grasped that the current arrangements for carer sits need to be fundamentally changed.

At the end of our discussions it was one of those occasions when less is more.  Sue has heeded Maureen’s call that she doesn’t need babysitting.  We didn’t use the words but it is clear that Sue has no truck with ‘Prescribed Disengagement’ (Swaffer).  Her guidance to the Care Agency will be that staff need to play their part in helping Maureen regain confidence, and competence.  Carers are definitely not here to chat, and just make sure Maureen is safe.

I am very optimistic that the new arrangements will be beneficial to us both.  We have all agreed that two hour sits will be adequate in future.  The revised arrangements will give me adequate time for myself, and long enough for Maureen to spend in the company of carers.

The discussions about my need to see my family were as thorny as always.  Maureen seems to have accepted that I will go alone in a couple of weeks, and has agreed to round-the-clock care whilst I’m away.  We are all hoping that as she gets stronger we will be able to make the trip together

I am sure some readers of this Blog will wonder what we are doing giving up 3 hours of free care a week.  My simple answer is that it would be hypocritical not to.  Why waste resources that are so scarce at the moment?  Trust is so important in all of this.   We are now working with a social worker who understands that needs fluctuate, and  flexibility is key to Maureen’s and my welfare.

This is such a refreshing change from the difficulties we have had in the past.   Some of my colleagues on Talking Point were concerned that there would be recriminations for raising concerns about the previous social worker: nothing could be further from the truth.

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: Reality Check Needed

General

It’s now 5.30 am, and I have been awake for a couple of hours.  Maureen decided she wanted an early start this morning, and opened the curtains at 3 am to see what was going on outside.  I could fill pages on what has followed but I’m not sure it would be of any real benefit.  What I need to do is outline some specifics about Maureen’s current presentation to discuss with our ‘support teams’ in the coming week:

  1. Maureen believes we are living in some type of Care Home.
  2. Maureen believes her family don’t know where she is.
  3. Maureen is very frightened: particularly about men
  4. Maureen has little concept of: time, place or person.
  5. Maureen needs support to undertake most domestic duties safely.
  6. Maureen continues to be troubled by discomfort in her left leg and foot.
  7. Maureen finds all underwear uncomfortable.
  8. Maureen has few clothes that fit or feel comfortable.
  9. Maureen’s intolerance to smells continues to create discomfort.
  10. Maureen’s confusion about who I am is becoming more frequent.

Just to give some context to the above points, in our conversation this morning Maureen asked me how we had got here.  She was unsure whether we were in Cleethorpes or Coventry.  Despite speaking to both of her sons on the phone yesterday; she talked of writing to them to tell them where she is.  She has no recollection of her son’s visit on Thursday or his brother’s a couple of weeks before.

Maureen has just gone downstairs, and asked me if it is safe to take a handbag with her.   She has returned a few minutes later as she has discovered another handbag, and wonders why she has two.  I can hear the kettle boiling downstairs, and will need to check the lid is down.  It’s likely she has poured several cups of tea, for other people in this Home.

Maureen has just appeared with a tray saying she couldn’t find half the things she needed.  Five minutes later she’s back with four mugs on the tray, and a jumble of other items laughing, and saying: ‘poor old sole can’t even make a cup of tea now’.  I could go on: the point I’m making is that things are changing, and we need to discuss a practical way forward for the next stage of our journey.

It would be helpful for Maureen’s Care Plan to reflect her current presentation, rather than how she was over 12 months ago.  My long awaited Carer’s Support Plan  needs to consider if my involvement as a Care Partner is sustainable with the current level of carer sits.

Postscript:  It’s now 7 am both handbags are now missing, along with Maureen’s spectacles.  Drawers and cupboards are being opened and banged shut as Maureen hunts them down.  I’ve had a preliminary search and they are not in the usual haunts.  Thank goodness the holiday period is over and Chloe our regular carer is back today.  I will need to seek respite in the warmth of the Spa and Sauna at the Leisure Centre : can’t wait!