Journal Excerpt 3.1
Tuesday, 5 February 2008
Mary to Dr Samantha Roberts. Good Report. Seven years since Mary was diagnosed (20 February 2001). “Should be in Guinness Book of Records.” Keep same medication and routine. No further appointments. Maree returned.
3.1 Points to consider
- Seven years since diagnosis
- What does the research say regarding Lewy body progression?
3.1 Suggested Activities
- Discuss the effects of long-term caring on the:
- primary carer
Journal Excerpt 3.2
Wednesday, 7 May 2008
Mary more confused. More than usual today. Sleep [sic] a lot in chair in lounge this evening. Had difficulty in waking her to take her to her bedroom. At 7: 30 pm she went to bed and went to sleep immediately. She called for a drink at 11:45pm. In very clear English she told me this: “I was coming out of a dance at Mullumbimby when a gentleman said, ‘Excuse me, may I speak to you?’ I said yes certainly. He said that the band was only playing three dances and that five would be better. I agreed. He said that someone should tell…about it. I did my bit.”
3.2 Questions to consider
- What should the nursing student know about the trajectory of dementia/Lewy body?
- What should the carer know about the trajectory of Mary’s disease?
- What are some key strategies that could be used when communicating with Mary when she is confused?
3.2 Suggested Activities
- Mapping the trajectory
- Review the trajectory*
*trajectory should be reviewed on a six-monthly basis (date-dependent)
Journal Excerpt 3.3
I looked at Mary and said five dances aren’t many. Did you go to dances in Mullumbimby? “Yes we used to go sometimes.” “Was this before or were you dreaming it now?” “Yes I was dreaming it”, and she grinned. “Ok I’ll see you in the morning”, and as I walked to my room Mary said, “Can I have the next dance?”
“It’s a bit late”, I replied.” I think they have finished the fifth dance already.” “Yes”, she replied and fell asleep.
Saturday, 8 November 2008
Evening – Mary began to sing prompted by something viewed on T.V. She sang ‘The last rose of summer’ and we asked her to repeat it? We recorded her singing on our digital camera with sound.
On her way to bed she asked, as she often does, “where am I sleeping tonight?” We gave the usual answer: “In your own comfortable bed as usual.” Mary seemed satisfied.
Comfortably tucked into bed she unexpectedly asked, “Do I get paid for washing the sheets?” Maree, thinking quickly, jokingly replied “If you do a good job.” Mary smiled and soon was asleep.
15 November 2008
Mary’s mobility seems to be a little worse. Today Mary has seen Lewy busily employed “collecting his gear in the family room and taking them [sic] away”. Later she explained that her tormentor was to be called ‘Dr Who’ in future as she didn’t know ‘who he was’.
Mary is spending more time concentrating on the invisible people who occupy her world and is resting and sleeping a lot more now. This includes sleeping longer in the morning.
3.3 Points to consider
The role of reminiscing
- Tools and techniques
- Reminiscing through:
- Music, photographs, food, books, storytelling, sensory stimulation such as aromatherapy
- Reminiscing through:
- What music, songs, dance?
- Contemplate the benefits of reminiscing
- How might reminiscing keep the carer motivated?
The care approach:
- Care/caring response.
3.3 Suggested Activities
- Adapt and/or brainstorm help sheets to develop person-centred care plan
- Use help sheets to help explain to Ed what is happening to Mary
- Develop material for Ed.
Journal Excerpt 3.4
Sunday, 28 December 2008
Mary still having delusions during day. Can ‘see’ people in the house – men, woman. Her frustration about not being able to ‘do things and … alone. Two days ago Mary was alone in the lounge. She got out of her chair and while walking over the lounge fell on the floor. Luckily she landed on the carpet without hitting any furniture as she fell.
I was alone (Maree in Toowoomba and Jess away for Christmas Day. I couldn’t lift her so made her comfortable on the floor). Luckily, Becca and Raif Redding were to visit, and when they arrived two hours later Raif helped to get Mary to the chair. Lately it usually takes two people to assist Mary to get from one place to another in the house, e.g. Lounge to bed, lounge chair to divan, chair to commode, and lounge to sun room. It is no longer possible for me to manage Mary at home on my own.
Mary is sleeping longer during the day. However she sleeps soundly at night – from about 10pm to 6 -7 am next morning. Appetite still good and bowels working well.
3.4 Points to consider
- What can we do to support the carer in situations such as this?
- When change occurs, re-assessment is needed:
- Important areas include: mobility, physical environment, falls risk, mini mental status examination, general health
- What strategies can be put in place to address the above?
- Assumptions and understanding:
- What assumptions might be made regarding Mary’s cognitive state?
- What might Ed’s main concerns be at this time?
- How could we assist him?
- Support systems
- Societal/generational expectations of support
- Is it time to discuss the next stage of care?
- What next?
- What’s happening to Mary’s skin?
- Plan and action
3.4 Suggested Activities
- Summarise the autonomic, motor, cognitive and behavioural changes that Mary is experiencing. How are these impacting her activities of daily living?
- Consider what support services are available in your local community for people with LBD. What if you lived in a rural or remote location?
- What supports could Ed be linked to:
- local councils
- community group and faith-based groups
- carer groups (bringing people in to talk to the carers).
- Review of services
- Understanding equipment use, such as mobility aids, and medications.
Journal Excerpt 3.5
Thursday, 1 January 2009
Tonight I realised that Mary does not know for sure who I am. In a quiet talk with her she said that I am not her husband but didn’t know who I was.
‘No, you are not my father, he is dead.’ Neither was she sure about Maree. “She is in bed”. “Yes”, I replied, “but who is she?” “I don’t know, she is a bit of a mystery”, she said with a grin.
Later I pursued the subject, asking: “How many children do you have?” “Four”, Mary replied. “Who are they?” “Ava-Leigh, Maree, Kaleb and Orlando”, she replied after some hesitation. “There you are, so Maree is your daughter.” “So you must be my husband”, she volunteered.
3.5 Points to consider
- The loss and grief process
- Enabling all family members to express how they are feeling about their loved one as the disease progresses.
Reflect on the relationship between Ed, Mary and their children at this stage:
- Think about your own feelings in this situation
- Think about your own response in this situation, the cycle of grief and loss
- Identified stages
- Application to practice.
Journal Excerpt 3.6
Mary often asks about her portrait, the one painted by Mrs Solesi in Bathurst in the mid 50’s. “Where is it?” “Hanging on the wall behind you.” “How long has it been there?” “30 years”
Mary believes that “Lewy” takes the original away and replaces it with a copy. Similarly, with her other paintings hanging on the lounge room walls.
Often when Mary is going from the lounge to her bedroom at night she asks where is she going and why are we going “this way”. She will also ask which bed she is sleeping in tonight.
3.6 Points to consider
- What are they?
- What is their importance?
- How are they used?
3.6 Suggested Activities
Examine/ discuss the effect on the carer of conversations that are not conversations:
- Just managing the situation
That is, the effects on the carer of caring approach/management.
Journal Excerpt 3.7
She asked about our wedding photo and whether I was her first or second husband and where have I been over the years when she has had “Lewy”. I said that I have been here looking after her with others.
She asked if we were divorced and whether I had died.
Mary continues to have delusions practically on a daily basis. See [sic] Lewy and his friend; sometimes animals. “Saw” children sitting on divan in the lounge this afternoon. Spoke to Mary about the possibility of going into residential respite. Agreed best to look after Mary at home. Matter closed.
Mary said that she saw Lewy on T.V. ‘Border Patrol’ – trying to get her painting through customs. However he was stopped and asked to explain.
Mary still asks [sic] “I want to go home.”
“You are at home; this is our home 42 Wallaby Way, Warenda. It has been our home for a long time.”
When Mary starts to walk from the lounge to her bedroom she often asks where we are going. “Where am I going to sleep tonight?”
“In your own bed where you always sleep.”
3.7 Points to consider
- Carer communication with the person being cared for:
- Anticipating (type and response)
- Understanding of what is happening
- Are social contacts being maintained?
- Is respite available/being used?
- What is the role of the family at this time?
- Priorities: whose come first?
- What type of support is needed and how could/should it be offered?
- Why do you think the ‘matter’ is ‘closed’?
- What are the short and long term effects of the ‘matter’ being ‘closed’?
- Are the carer’s emotional/psychological/physical needs being met?
- Time travelling
- Refer to historical assessment
- Reiterate the progress of the disease
- What might help Mary recognise where she is?
Journal Excerpt 3.8
Friday & Saturday, 13/14 February 2009
Giving Mary medication she asked “why are you keeping me alive?” “Because I haven’t finished digging the hole in the back yard!” I replied. Later in conversation with Ellenna (carer) who said, “My husband wants to be buried, but I want to be cremated”. Mary chipped in to say: “I want to be cremated too”. “Well”, I added, “I’ll have to fill in the hole in the backyard!”
27 February 2009
Mary losing ability to clean her teeth. I have to assist her or do it myself. Mary having periods of ‘depression’ – crying for no apparent reason and speaking in a way that is impossible to understand. Mobility is getting worse. Appears she has ‘gone down a peg’.
3.8 Points to consider
End of life considerations – having conversations about death and dying. What if Mary had requested voluntary euthanasia when she was still cognitively intact?
3.8 Suggested Activities
- What is end of life care?
- Change (amplified loss of function)
- Swallow (review diet).
- Develop a menu for Mary that takes into account her nutritional needs, is acceptable to her and able to be consumed.
Journal Excerpt 3.9:
Thursday, 12 March 2009
Mary not responsive this morning. Just wanting to sleep. Unable to shower, Lana gave her top and tail. Mary took Exelon OK but not able to eat – very sleepy. Not talking or responding in any way. Phone Greenhall who suggested I call an ambulance – maybe a semi-stroke. Spoke to Nadia James. – definitely not an ambulance – they don’t understand her Lewy Body situation. Nadia suggested we get a specimen of urine (UTI). Tried but not successful. Nadia will call again at lunch time.
Wednesday, 29 April 2009
Mary restless this morning. No great recognition. Had visitors Phillipa, Lana, Abbie Armstrong, Lailani, Maree, Kaleb, Odette. Have phoned everyone who may like to know. Tried to feed by mouth – two small lots of yogurt.
Continuous flow of morphine. Saline solution but no nourishment. Water swap [sic] in mouth.
On Saturday, 2 May 2009
Mary passed away peacefully at 11 am. I was present and Ava-Leigh, Maree, Orlando and Kaleb soon arrived. We stayed til 2 pm except Maree. who stayed longer. Kaleb. began funeral arrangements with (Funeral Directors). As an organ donor Mary’s eyes were accepted for research purposes.
3.9 Points to consider
- End of life care
- Start talking
- Develop a plan
- An interdisciplinary approach
- Develop a more concerted team approach