Tag Archives: Better Practise

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: A Care Partner’s Resolutions for 2016

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My resolutions for 2016 are extracted from an article by the Alzheimer’s Care Resource Centre.  I have placed one word after each resolution to remind me how to action my resolutions:

‘Here are 10 caregiver resolutions for the New Year:

Caregiver Resolution #1 – I must rest. I must take the time each day to remove myself from the situations that stress me and make me tired, and I must do so safely. meditate
Caregiver Resolution #2 – I must ask for help. I must not feel guilty for this. I know my friends and loved ones would want to assist. And for me to rest, I will have to ask for help. ask
Caregiver Resolution #3 – I must adopt a healthy lifestyle. I will attempt to get physical exercise every day if possible, if even for a few minutes. I will make healthy food choices, and I will not abuse alcohol or drugs. I will schedule and keep regular visits with my healthcare provider. walk
Caregiver Resolution #4 – I will take care of my spiritual health. I will feed my inner self through meditation, prayer, silence, reading, the arts, or in other ways I consider true. I will seek wise and professional council if needed. Buddhism
Caregiver Resolution #5 – I will take care of my emotional health. I will not walk this road alone. I will share my story with others. I will seek their advice. I will continue to enjoy hobbies and explore new ones that interest me. I will seek professional help if needed. counselling
Caregiver Resolution #6 – I will educate myself about the disease that is affecting my loved one. I will investigate accepted caregiver resources and attempt to follow recommendations. study
Caregiver Resolution #7 – I will find humor in living each day. I will not feel guilty about laughing, even when times are bad. I will try and laugh with my loved one. smile
Caregiver Resolution #8 – I will continue to see my loved one as a vital person, and validate him/her daily. I will look past the disease that is affecting my loved one and into their heart and soul. I will love them in the moment, in the now, just as they are. I may grieve at times, but I will honor the person they continue to be and my relationship with them. love
Caregiver Resolution #9 – I will see myself as a hero and value my gift of caregiving. Heroes are human and have faults and weakness. But heroes draw upon a silent strength and overcome. Often, the most heroic thing to say is, “I will wake up tomorrow and try my best.”honesty
Caregiver Resolution #10 – I will clasp the hand of my loved one and the hands of other caregivers, lifting both mine and theirs in triumph over the disease that seeks to steal. I will give back to them, and to myself, our humanity. share

May every day of the New Year glow with good cheer & happiness for you and your family’.

 

Dementia: What’s Happened To My Wife?

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I decided that I needed to join Maureen in bed at 9.30 last night as she seemed very frightened. She had taken herself upstairs half an hour previously, without a word’, after waking from dozing on the sofa.  Just to be on the safe side I followed her upstairs shortly afterwards to assist her with night time routines.  Then I went down stairs to settle for a bit of Bruce Willis on the TV.

My plans for a bit of relaxation were interrupted by the need to put the lights back on as the trip had gone on our fuse box.  I mentioned this to Maureen as I joined her in the bedroom, and she said: ‘I wouldn’t know what to do if I was by myself’.  I did my best to reassure her over this recurring theme but her comments caused me to reflect on what has happened to my wife.

Before I ‘ran off to live with Maureen’ or ‘dumped myself on her’, depending on whose version you take, she had lived by herself for eight years.  In that time she had managed her own affairs with little assistance from others.  She kept a claw hammer under the bed just to be on the safe side.

In the early days we both struggled to adopt top living together: me with a very organised woman; Maureen with a rather chaotic individual.  To some extent positions are now reversed following  stroke but Maureen doesn’t have the luxury of a sound environment in which to learn.

Maureen’s experience following stroke has major shortcomings.  Grimsby hospital missed the boat and failed to diagnose stroke.  Once vascular dementia was diagnosed Maureen has been subjected to Prescribed Disengagement (Swaffer).   She has also been at the mercy of financial austerity: initially ‘supported’ by professionals who did not understand dementia.  (This new set up on WordPress makes it difficult for me to refer back to posts that detail these complications in our lives).

2016 provides an opportunity to move forward.  Professional staff will be returning from their holidays next week.  I intend to work alongside Sue our social worker, and Mel my Admiral Nurse, to devise a strategy for the next stage of our journey.  We all need to be singing from the same hymn sheet so that neuroplasticity rings out from the rafters in this household: then my capable wife will be back.

 

 

Dementia: Staying Positive

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I think Maureen and I have been very sensible over the last week or so.  There is little doubt that there have been changes in her presentation, and our bio social/psycho approach to dementia has paid off.  As a precaution antibiotics have cleared up any suspicion of infection, and we move on.  We had a great day yesterday: staying in bed until she wakes in the morning leads to a positive start to the day.  Consequently, I will not blog before 8 am from now on.

We are far from fans of medication, and only take tablets as a last resort.  Therefore, my hunch was that the environment was impacting on Maureen’s presentation rather than further progression of dementia.  Familiarity with some of the thinking of Irving Kirsch and Peter Kinderman will always be behind my approach to being a Care Partner.  I always try to consider what has been going on, rather than focus blindly on symptoms.

I will always be grateful to my cyber friend Irving Kirsch for his exposition of the shortcomings of antidepressants for mild to moderate depression.  Indeed, had I accepted the ‘chemical imbalance myth’ I would have been swallowing mirtazapine for the rest of my life.  My contact with  Peter Kinderman has been minimal but I will be eternally grateful for his assertion of the need to focus on environment rather than symptoms.  This way of looking at things has great resonance in our current situation.

Maureen has shared much in the last few days: opening up on her anxieties probably more than she ever has done before in her life.  It is not surprising that she is frightened at so many levels: strange men in her room; that I will get fed up of her and put her in a home; that she can’t remember the simplest detail; and much more.  None of this is a mental health issue it is a healthy reaction to dementia.  Maureen didn’t need medication she needed to share her concerns and know that she is loved.

 

Dementia: It’s Tai Chi For Me!

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I have already posted this morning on Willie Nelson being one point in a strategy to help us through this hazardous journey.  I am pretty confident that stepping out to the Rumba in the kitchen can only help Maureen recollect who I am.  In fact I have already been prancing around the bedroom to Dolly Parton, and 0ne or two others.  YouTube is part of a wake up routine to help ground Maureen in the morning.  However, something more is needed to keep your truly on track as the challenges of dementia come thick and fast: tai chi is the answer.

We have attended tai chi classes on an intermittent basis over the years.  The routines have helped me to restore much needed flexibility into my stiff old frame.   They may also help me to remedy with the problems I have with my rotator cuff in my left shoulder.   Fortunately, they take place on Monday and Wednesday mornings, so they fit in nicely with carer sits for Maureen.

Tai chi is a sort of moving meditation which will be of real benefit at the moment.  It will help me to calm my mind, and put me in a better place to address the daily challenges of this journey.  Once I sort out my sleep pattern I also plan to return to Buddhist meditation classes.  Both activities are patronised by really caring, and supportive, folk: something that I really need as this journey progresses.

 

Dementia: Willie Nelson To The Rescue

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Maureen slept for most of Christmas day.  I woke her for meals, and we watched the last episode of Dinner Ladies.  I managed to keep callers at bay, apart from a brief telephone conversation from Maureen’s youngest son.

Just as we were going to sleep we talked briefly about Maureen being uncertain about who I was.  Once in bed her reticence towards me was explicit.  I made it clear it didn’t matter, and it was something that would pass.  Then this morning it came to me: we will dance our way back to closeness.  Maureen will eventually remember me as her dance partner – after all we have Gold Medals for Latin and Ballroom.

As I came round in the morning I thought: I’ve got it – the Rumba one of our favourites.  Then I thought hang on a minute Willie Nelson will do it for us: his version of ‘No Mas Amor’ is just the ticket!

Click here  and think of us as we Rumba our way back to being husband and wife – in the kitchen of course!

 

Dementia: ‘Practice Makes Perfect’

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Away days like yesterday are going to be a common feature of my life from now on.  However, there are certain things to be sorted out before I set out again in a couple of weeks-time:

  • An up to date Care Plan
  • Guidelines for carers and visitors
  • Basic information about our household

It is really important to avoid a repeat of yesterday.  Maureen needs to continue with her normal routines in my absence.  She needs a reasonable mix of stimulation and rest.  Her food needs to be of a good nutritional standard.  Medication needs to be offered and taken.

It is inevitable that there would be teething problems as we begin this new stage of our journey.  We all need to move on and as they say: ‘Practice Makes Perfect’.

 

 

Dementia: In Safe Hands

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It’s reassuring that Maureen will be with carers that she knows when I’m away tomorrow. 

Once again I need to praise Sue our social worker who is  aware of Maureen’s vulnerable state at the moment, and has requested that we have familiar faces on the scene.  This has meant that Chloe’s idea about writing a Care Plan for her colleagues is not needed tomorrow.

I chatted to Chloe on Friday about the guidance she would give her colleagues and it went something like this:

  • Introduce yourself as a friend of Chloe’s
  • Say you have just popped in to give a helping hand
  • Never say you are here so Paul can go out
  • Give Maureen plenty of space to do her own thing
  • Never try to force Maureen to do anything
  • Do not try to make Maureen have a shower or wash her hair
  • Take into account that Maureen has a 50% peripheral vision loss
  • Go out for a walk with Maureen if she is keen to take exercise
  • Understand that Maureen is still grieving for her daughter who died 3 years ago
  • Understand that Maureen may confuse Paul with her previous husband Eddie

I’m sure Chloe will add to her Handy Hints to colleagues.  It also seems likely that the idea will catch on and the Agency will adopt it as standard practice.  How fortunate we are to have such a committed carer as Chloe in our midst.

 

Dementia: ‘Please Don’t Leave Me Alone’

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I have just returned from a short trip to the shops to find Maureen very distressed.  When I found her in the bedroom she said: ‘I don’t know what I’m doing’.  She went on to tell me that she became very frightened as she: ‘felt useless that she couldn’t do anything to help, and I was doing all this running around’.  I have posted below an extract from an article by  Bob DeMarco, that appeared in the Alzheimer’s Reading Room, to remind me why I can’t leave Maureen alone at the moment:

‘The simple facts are that at a certain point in the development of dementia, a person really cannot be left alone.

The easiest way to understand this is that dementia patients do not “cope” well when left alone.

You could ask yourself this question. If the person who is left alone is angry when you return, how do you think they might have been feeling while you were gone?

Do they feel,

Confused? Afraid? Abandoned?

Alzheimer’s patients are very fragile. As the disease develops they don’t have any real concept of time. To a person who is deeply forgetful 30 minutes might seem like an entire day.

For example, I might go to the store for 30 minutes and leave Dotty alone at home. She would be angry when I returned.

Later that night she might say to my sister Joanne, I don’t know where he goes, he goes out all day long. She said this even though I was only gone for 30 minutes I and I went to the store.

Clearly she had no understanding or any memory of how long I was gone, and why I was gone.

Dotty might also say, I don’t know what he is up to. This was code for Dotty thinking or believing I was going to put her in a “home”.

Like any feelings or emotions in any of us, if you let these type of thoughts build up over time it is likely that you are going to “lose” the dementia patient.

When I say “lose” what I really mean is lose their trust.

If they don’t trust, or if they stop trusting you, you are really in for some very miserable times. If an Alzheimer’s patient does not trust you they will become angry, irritable, challenging, and hard to deal with.

When this happens you both suffer the burden.

The person who is deeply forget becomes confused, then angry, and then they “act out”. You on the other hand get left with an upset stomach (agita), and a very sore heart.

That is the way it felt to me.

Some caregivers complain that they can’t get a minutes peace. That the person who is deeply forgetful follows them around, or constantly calls out for them when they cannot see them. Dotty did this all the time.

Let’s reverse field. Instead of “venting” and complaining about the behavior of a person that is deeply forgetful, let’s instead ask ourselves, why do they follow us around, why do they call out when they cannot see us?

The simplest answer to this question is because we are their lifeline.

We are the person they trust (maybe the only person). We are the person that keeps them attached to the real world.

Like it or not, you become the one person in the world that a person who is deeply forgetful can rely on and trust. You are the only person that can keep them from becoming confused, angry, and just downright scared.

After a certain point in time a person who is deeply forgetful gets scared when left alone. This in turns leads to all kinds of negative behaviors’.

Dementia: Talking Therapies Needed

General,

I have decided to change my plans on my second Blog of the day.   Rather than dealing with Christmas I need to focus on an issue that Maureen has to deal with day after day: low mood and grief.  She woke up this morning, once again, confused and grief stricken; even depressed.   Her thoughts had taken her into negative territory and by the time I had tea beside her in bed her mood was definitely low.

Some time ago I mentioned that the Memory Service had offered to keep her on their books if she admitted to low mood.  A Care Co-ordinator said she could understand if her mood was low, and if it was they could help her.  As the only reason they could keep Maureen on their books was to monitor medication, I think it is fairly safe to say that antidepressants were around the corner.  I am bemused here because Irving Kirsch was only across the Humber Bridge at Hull University when he proved that antidepressants were no better than a sugar coated pill for mild to moderate depression.  He used Freedom of Information to prove that drug companies had not disclosed details of tests that did not cast their medication in a positive light.

When you consider what Maureen has been through lately why would you prescribe tablets that are likely to give her side effects?   Her own G P is reluctant to prescribe medication unless it is essential because he knows that her body does not react well to tablets.  Why on earth is talking therapy not part of NICE Guidelines when someone is diagnosed with dementia?  Once again I’m back one of my hobby horse that we need to move dementia out of Mental Health: it is not an affective disorder it is brain injury.  This might just lead to an acceptance that talking about the potential of the condition to lower your mood might be helpful.  Wasting time and money on tablets that don’t work is crazy: talking therapies are needed!