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Experience: patient, carer, family: Home

The long goodbye

Ed's life changing experience

Introduction to Module 2

Module 2 expands on the content presented in Module 1.  It humanises the broader understanding of dementia and discusses how a dementia diagnosis affects the patient, their family and friends. Many health professionals do not have opportunities to see their patient outside their workplace.  That is, working in an acute healthcare facility may limit a nurse’s view of patients and carers and their everyday experiences.  Likewise, community workers may not have the opportunity to see the patients’ acute healthcare experiences.  While communication between health services is core to service provision, and each service interfaces with the others, the opportunity see the services and the transitions between them from a consumer perspective is rare and valuable.

The theoretical knowledge gained from this module is enhanced by additional learning opportunities. The content of this module is linked to examples in Ed’s narrative, activities and learning strategies to better understand the concepts

About these activities & resources

The activities and resources for each module are suggestions. However, many of these are suitable for use with other modules, and you may choose to mix and match to suit your need.

Journal excerpt and associated resources for learning and teaching -module 2

Journal excerpt Points to consider & suggested activities

Journal excerpt 2.1:

The most important thing for me now is to give caring for her (Mary) top priority

Our younger daughter has come to live with us to care for her mother.

When she was a child she would tell her mother, "Mummy when you get old I'll look after you".   Her kindness is so much appreciated.

Upon becoming a carer, major changes took place in my lifestyle. –I’m not resentful - not much anyway - because I believed I owed much to Mary - a loving wife and devoted mother to our children for over 50 years. I wanted to repay her for her kindness and provide care to help soften the problems arising from her dementia.

The most important thing for me now is to give caring for her top priority - to be available when needed, to share humorous episodes with her, to help with activities that Mary can no longer handle alone and to cry with her when she is depressed, and in doing so to try to keep myself calm and healthy and most importantly to do all of this in our own home environment until such time when we accept that she would receive better treatment in a residential nursing home than we could possibly provide at home.

Initially home care did not seem very onerous.   Mary's main symptoms included hallucinations at night involving attacks by snakes. In repelling this imaginary attach [sic], Mary sometimes injured her arms or legs.  As a result of a special problem, Mary was prone to falling and to having difficulty in reading and writing.

 

2.1 Points to consider:

What is happening here? 
What support services are available to Ed and Maree?

2.1 Suggested Activities:

Individual and group activities to identify and explore the concept of roles and responsibilities. Consider the challenges and potential impact caring for the person who once cared for you

Jigsaw classroom– 

Students gather the evidence for best practice and present their findings to the group

Identify the key points from Ed’s insights.  How could this important information be used to develop action plans for Mary’s care that support Ed, Maree and Mary?

Using an example of a ‘typical’ home where you live as a guide, consider the support services, alterations and potential challenges to providing care. Mary’s symptoms would be managed  differently in a hospital/aged care facility.  Consider the strategies that may be implemented in a care facility to meet Mary’s needs. What advice would you give Ed?

Journal excerpt 2.2:

Fortunately Mary showed no inclination to wander, nor become angry. Her short-term memory deteriorated yet her long-term memory remains, and she has little problem in recognising people and objects.

So in the early years of Mary's dementia, my caring role was not too demanding or stressful. However, as the years passed and Mary's condition slowly deteriorated, it became more demanding, especially at night when it became necessary to get up and assist her to the toilet. This was when I noticed that my broken sleep pattern was taking (a) toll on my body both physically and mentally. I became fatigued easily and was losing interest in participating in social activities which I (had) previously enjoyed.

I began to worry, and wondered if my symptoms resulted from my caring role or from some yet undiagnosed more serious health problem. I decided to seek the advice of my GP, and made an appointment.

We explored the situation. My doctor appreciated the situation from caring could sometimes result in the carer showing signs of depression. However, he wished to explore all possibilities and suggested a range of blood tests as a first step. I agreed and made another appointment to discuss the results.

2.2 Points to consider:
What is carer fatigue?
How would you discuss this with Ed?

2.2 Suggested activities:

Divide a page into three columns:
Column 1 – physical/psychological challenge to be addressed
Column 2 – for each challenge, identify a strategy
Column 3 – for each strategy, identify tools and resources required

Ed’s insights are a valuable learning tool for healthcare providers. Reflect on the changes you would make to providing care for Mary that considers Ed’s needs

Jigsaw classroom –
Research and present current best evidence on the concepts of ‘activity of living’and ‘activity of dying’.

Journal excerpt 2.3:

Wednesday, 9 January 2008
Mary a bit (lot) 'weepy' today. Concerned (still) about spending one night at (respite centre). Says it's hard for carer and me to understand how she feels. She can't speak or feed herself! Explained that the Cottage is different to the Nursing Home where she had respite previously - small and someone would look after her. Said 'they didn't on Tuesday at lunch time and I spilled peas everywhere!'  Mary loves to be at home with Maree and myself.  She's happy because she loves us and knows we'll care for her. Also there are nice friendly people coming and going all the time.

2.3 Points to consider:
What does respite provide?
What should respite/carers provide?
How do we support the decision-making response?  

2.3 Suggested Activities

Discuss (in groups)
1.  The Activities of Living (ALs) & – where on the continuum is Mary?
2. How do we balance/can we balance the carer’s need for respite & the patient’s wish to not be ‘in care’?
3. What is your position?     
4.   How might your personal attitude affect your ability to work with patient? Carer?        
5.   Develop some strategies?

Journal excerpt 2.4:

Mary says she knows that she shouldn't interfere with our lives - we have our own lives to lead.  I assured her that there is nowhere else I want to be and that she is not affecting anyone's life!

2.4 Points to consider:
Consider Mary’s emotional/psychological state
How might the nurse respond to Mary’s declaration?
How might the nurse / Health care team help Mary at this point? 

2.4 Suggested activities:
Reflect on your own attitudes/ideas
–How do you think dying people  should be cared for?

Journal excerpt 2.5:

Monday June 2008
Mary ok. In past week or two has had delusions during day.  Such as house has been altered (changed).  Pictures on wall taken and returned. 'Bump' on floor.

In this period - showed photos to friends but could not recognise her relations - Grandchildren etc., upset.

2.5 Points to consider:
What specific assessment/s could/should be done at this time?
How is the person being cared for and the carer involved in the falls management plan?
What does it mean to have poor/inconsistent insight:
–to Mary
–to Ed

2.5 Suggested Activities:

Discuss questions the nurse might use to clarify (with Ed) what is happening

Journal excerpt 2.6:

Wednesday, 15 October 2008
Still having delusions (seeing things) during day.  'Lewy's' red-headed lady friend woke, … sits on the divan in the lounge.  Also two to three 'men' in the family room.  Still sleeping well at night; doesn't 'bounce' out of bed in the morning.  Waits for carer to arrive before getting up.

Saturday, 18 October 2008
Mary fall [sic] in lounge room. Tears on her upper and lower parts of arm. Greenall (aged care services) nurse attends. Pia dressed upper arm. Keep dry - if wet contact Greenall. Dressing not water-proof. Lower arm - dressed with water-proof 'bandage'.

Mary having delusions about being out somewhere (at races - Caulfield Cup) and having to get home before it becomes dark.  We have no drivers [sic] licence to drive bus.  Quite a dilemma.  Can't walk about in somebody's house without an invitation (Mary heard M. walking in our house). Mary finds it hard to realise that we are in our own house all the time.

2.6 Points to consider
Carers:

–Type of involvement
–When to be involved
–How much involvement
–Trust-building exercises

What should the Student nurse know?

What principles does Ed need to understand (e.g. touch technique)?

Health Management & Managing delusions
–how should/could carer respond?

What is the difference between hallucination and delusion?
–review and characterise ‘episodes’ over the progress of Mary’s Lewy Body

 

2.6 Suggested Activities:
Develop a wound care strategy
Develop a falls management strategy
Demonstrate how you would help carer understand what to do Develop a 15-minute presentation using layman language that would help Ed understand what to do

Journal excerpt 2.7:

Monday, 20 October 2008
Lewy's red-headed lady friend has been in at various locations in the lounge and family rooms today. Mary's fractured ribs troublesome today. 

Saturday and Sunday, 25 and 26 October 2008 
Mary sleeping most of the day since falling.  Also talking a lot to herself - mostly incoherent.  Ribs sore a lot of the time.  Left arm dressed on Friday.  Healing very well.  Nurse Neeson lives north side.

Mary depressed today (Sunday) - everything going wrong - can't read or write and so on. Jess here for next week caring for Mary. Maree. in Sydney at Buddhist retreat.

2.7 Points to consider

Assessment
–what type?
–when?

When home care/community nurse is not easily accessible, what does the carer need to know?

Assessment & Management (medication)

Diversional technique
–creative outlets

2.7 Suggested Activities:

Role Play:

–Sleep assessment
–Skin assessment

Journal excerpt 2.8:

Monday, 28 October 2008
Mary confused about where she is.  Will ask where she was and wanted to go home and take her portrait with her.  Difficult to convince her that she is at home.  Asked where her bedroom was.

2.8 Points to consider:

Fluctuating levels of insight
–how can this be managed?

2.8 Suggested activities:

Research, discuss, share with group
–palliative care &
–when could/should this subject be broached with patient? family?

 

Journal excerpt 2.9:

Sunday, 12 December 2008 
Mary finds it difficult to focus on T.V. Asks where is it? Still wants to go home - take me home. Today she said: "take me home, to die". Mary's [sic] often talks about dying or wanting to die. Frustrated that she can't do things.

Saturday, 24 January 2009 
Mary depressed.  Just wants to "lie down to die".

Has UTI, very tired and has been quieter than usual the last couple of days.

2.9 Points to consider:

What effect does Mary’s depression have on Ed?

Building /supporting resilience:
–what needs to be in place to support the carer?

2.9 Suggested Activities:

Develop/adapt physical / psychological assessment

Journal excerpt 2.10:

Tuesday, 29 January 2009
Mary slept 8:30 pm to 8:00 am when she took her Exelon then slept again and did not wish to get up for a shower and dressing [sic] at 10:30. Eventually got up and had breakfast and medication at 11:00 am.  After lunch had sleep.  Was 'down' this arvo.  Had nothing left and wanting to die.  Later told me that I should see that she is "going down".

Sunday, 1 February 2009
Mary, ... new delusions, dropped me off somewhere and had to pick me up. Also saw a child in the house, ...

Tuesday, 3 February 2009
New delusion, 'Bride', being married in a tub in the laundry.  'New' man in lounge room; big man; had his door open one day.

6 February 2009
Mary very tired.  Started Movicol daily.  Definitely lost ability to clean teeth.  Still incoherent most of time.

2.10 Points to consider:

The process of physical and mental deterioration

Change
Reminiscing
Time travel
Reduction of Anxiety
–what?
–how?

Increased physical load to the carer

2.10 Suggested activities:

Research & Group Discussion/s –
1. types of medication for dementia:
–what?
– why?
– actions?
–compatibility?
2. other dementia-related medication
3. what would you be teaching the carer about drug/side effects
–carer information written for the carer

Journal excerpt 2.11:

11 February 2009
She has become angry with me in the morning believing I am going to 'get rid of her'. Asked me where is the rope that I am going to strangle her with.  Has looked at me with fear and anger and haven't [sic] wanted me to touch her.

Later on Tuesday she told Kalab. that she 'put on an act' this morning and later in the day asked me 'what did I think when she acted as she did this morning.  Mary is more confused now. Asks a lot as to 'what is going on' and is obviously more confused.  Cries a lot and complains that 'she is useless'. Still says at times that she 'wants to die'. She is much quieter during the day and doesn't speak and enjoy the day as much as she used to.  Also with longer hours in bed 7:30 pm to 10 am (14 1/2 hours) she is more restless during the night.

22 February 2009
Mary shows sign of anger and frustration at carer (Ellena) for first time this morning. Also insisted that someone had been stealing her clothes.  (Still believes that 'Lewy' is moving her portraits, particularly her portrait and that 'Lewy's' men are in the house).

2.11 Points to consider:

1. What’s happening with Mary?

2. Depression in Dementia
–how is it managed?

Journal excerpt 2.12:

Saturday, 14 March 2009
Mary have [sic] … today and seems depressed.  Still taking antibiotics for UTI. At one stage was saying the Holy Mary and talking of God. Still seems to be affected by UTI. Adrienne called late afternoon. Has torn skin on leg. Seems very tired.

Saturday, 25 April 2009
Spent day at hospital.
  Kalab, Aiden, , Hannah, Bella Osmond, Orlando, Betty (Greenall),  Becca Redding, Jacintha all visited.

Little change in Mary's condition.  Appeared once or twice to recognise someone but could not be sure.

Unable to talk.

2.12 Points to consider:

Role of spirituality in care?

Reflect on own beliefs and attitudes
–what does the research say?
–application to practice
Wound care

Journal excerpt 2.13:
To be realistic, one must conclude that unless there is some unexpected change for the better, Mary is unlikely to leave hospital.

Some decision (or suggestion) will be forthcoming from the medical staff on Tuesday 28th 10 am to 12 pm.

Tuesday, 28 April 2009
Phoned those who should or would like to know Mary’s condition. Beatrix M, Dannika and Abbie A said to visit in next day or so.

2.13 Points to consider

What evidence would the HP /team use to inform decision?

2.13 Suggested Activities:

Debate the pros and cons arguments /solution for ‘where to from here?’