Below is Ed's Journal, which shows the journey an elderly couple traveled when one became the full-time carer for the other. It is an invaluable insight into the world of carers, their families and those being cared for.
A long goodbye
Mary was on reception at the hospital when I went for treatment. I liked her immediately and eventually she agreed to go out. We courted, became close and I asked her to marry me. She said, "Speak to my father". I did. He grinned and said, "Ask her mother".
We married, honeymooned in the mountains, and settled in the city until I finished my studies. We were very happy and so much in love. We asked ourselves, do good times like this last forever?
Later she felt ill and consulted her doctor who told her she had miscarried. I was dismayed - would we ever have a family? Cheerfully she replied, "Of course, we will! Don't worry - everything will be OK".
And so it proved to be. We reared four healthy children and enjoyed the journey.
As the children matured, she build [sic] a career and travelled within Australia and overseas both professionally and socially. She led an active and rewarding lifestyle. We both looked forward to a satisfying retirement.
She drove to the medical centre for a routine visit. Her doctor, noticing she was disoriented, suggested further tests. Eventually, she was diagnosed with Lewy Body Dementia.
Our lives were to change dramatically. She was gradually to lose her cherished independence - could no longer drive, required assistance with personal care and other activities at home and in public. Luckily, she retains her cheerful nature, wry sense of humour and full recognition of people and places.
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.
Dementia has been described as a 'long goodbye'. Tonight we will be close. We'll talk, recall past experiences, sleep and dream. Tomorrow we'll wake together to another beautiful day. We are so fortunate. We know now that good times do last forever.
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.
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.
My wife Mary was diagnosed with Lewy Body Dementia in 2000. Hallucinating is a major disturbing symptom of the disease and occurs regularly during the night.
As her primary Carer, I had to take precautions to minimise any damage Mary might inflict upon herself during these nightmarish episodes, which often involved her frantically attacking snakes.
These precautions included Mary putting gloves on her hands and knee-high stockings on her legs.
Once [sic] evening when Mary was ready to retire, I helped her put on the gloves and stockings, tucked her into bed, kissed her 'Goodnight', put the bell on the bedside table, dimmed the light and retired myself.
I hoped that when I was called later it would be to help Mary to the toilet, rather than deal with one of her nightmares, which could be frightening.
The ring of the bell awoke me at around 2am. Barely awake, with eyes half closed in the dim light, I made my way cautiously to Mary's bedside and assisted her to the toilet. As I waited, I threw back the doona and top sheet to make it easier for Mary upon her return. It was then I noticed the 'poo' on the bottom sheet in the centre of the bed. I was somewhat surprised because Mary is not incontinent...but sometimes accidents happen! Quickly I grabbed an old white towel from the linen cupboard, placed it over the 'poo' and carefully scooped it up. I hurried to the laundry and placed the towel and the contents on the floor. The bottom sheet did not appear to be soiled and I decided not to mention the mishap to Mary. Soon she was comfortably settled into bed and sound asleep.
The next morning, I casually mentioned to Mary what had happened. 'That's [sic] can't be right', she protested, 'I never do that kind of thing!' 'Well', I replied, I'll show you'. We went to the laundry and I carefully unwrapped the towel to expose its contents. Mary laughed 'That's not poo, that's my short stockings. I took them off under the bed-clothes during the night. See how they roll themselves into a neat bundle'. I joined in the laughter. A case of mistaken identity.
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 (respite centre) 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.
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!
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.
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."
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.
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.
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.
Mary fall [sic] in lounge room. Tears on her upper and lower parts [sic] 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 Maree walking in our house). Mary finds it hard to realise that we are in our own house all the time.
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.
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.
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.
Mary having a lot of delusions:
Wants to go home.
"Lewy's" men (up to three in room) and watching her
Asks at bed-time: "Which bed is she going to sleep in tonight?" Pictures still being shifted about (by "Lewy").
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.
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.
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.
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.
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.
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.
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."
Mary depressed. Just wants to "lie &own [sic] to die".
Has UTI, very tired and has been quieter than usual the last couple of days.
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".
Mary, … new delusions, dropped me off somewhere and had to pick me up. Also saw a child in the house …
New delusion, 'Bride', being married in a tub in the laundry. 'New' man in lounge room: big man; had his door open one day.
Mary very tired. Started Movicol daily. Definitely lost ability to clean teeth. Still incoherent most of time.
Mary 'sat down' on way to shower. Going to use shower chair with wheels in future. Mary, Jess and I went to lake for walk and lunch.
Using shower chair. Seems successful.
Mary has reached 'new' stage in her decline.
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 Kaleb 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.
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 Ellena (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!"
Mary's speech is getting more difficult to understand, particularly at morning and night. I'm getting advice and suggestions from a number of quarters in regards to the ventures [sic] of continuing to look after Mary at home vs. putting Mary in a nursing home. E.g. Nadia James suggested Malanni - close. Could easily visit etc. Someone advised from …, Jess, family (Kaleb & Ava-Leigh). Emphasis seems to be on my needs – health, etc. I think Mary is not yet ready for residential care. Her quality of life is best served at home. I must take a more relaxed attitude and put Mary's interests first. Take each day as it comes and the pursuit for what may happen in the future.
Leave doing some activities till later. Bridge, dancing, golf - at least on a … basis. Mary's mobility is slowly deteriorating which could be a problem in the future.
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).
Mary very tired. Quieter and reflective. Appears to be 'depressed'. Having more difficulty in speaking. Getting hard to understand. Mobility not good.
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'.
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 Greenall 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.
Collected specimen and tested at Doctor’s surgery. Positive - put her on antibiotics for 7 days.
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.
New behaviour: Hallucinations all night and early morning. Up six times. Incoherent most of the time. Aggressive.
Mary hallucinating again all night. One episode involved a snake and Mary inflicted a tear on her lower arm. Dressed in a waterproof cover. Mary [sic] hallucinations cover a wide field of imagination. Having great difficulty in swallowing tablets. Taking liquids OK.
Unable to wake Mary this morning. Eyes open a couple of times. Shania and I gave bed wash and change [sic] pull-up pants. Lacie and Rebekah visited. Suggested ambulance to hospital. I suggested we consult Dr Nadia James’s opinion first. Nadia agreed to visit Mary after morning practice. Arrived 3pm. Decided should go to hospital by ambulance at 4pm.
Visited 5 - 7 pm. Looking for 'something to treat'. On drip, giving oxygen through mask, urine taken. Further tests tomorrow. Orlando, Kaleb and Ava-Leigh told.
Had talk to Dr Darcy Evans. Female nurse, Belinda, and Male nurse, Jack. Discussed continuing life support if all possibility of recovery has passed (Continuing equivalent to 2-3 days).
Explained that Mary and I had discussed this matter. We chose to discontinue support past a reasonable stage.
Surprised to be having this discussion at this early stage. Darcy indicated that this kind of discussion was routine as it was preferable for the medical team to know the thoughts of family members before commencing normal treatment regime.
Phone call … Dr Kaur, hospital. Asked about Mary's past medical history and behaviour over recent past. Mentioned that Dr Kilbee was on leave. Dr Shay still at hospital.
Mary will be admitted - check tomorrow where she is located and who her Dr is.
Mary in Hospital. Awake but not talking. Maybe she can hear and maybe recognise family. Ellena, Lana phoned, Lailani called.
Orlando, Kaleb visited hospital. Spoke to Ava-Leigh and Maree. Someone (Adrienne?) left flowers.
Phillipa came 2 hours - phoned her tonight.
Mary 'semiconscious' today. Still nil by mouth. No further draining of lungs - cough not evident. Examined by ' Connor '. (Speech Therapist) no swallowing problem. Decided to continue nil by mount [sic] … Mikhaela put in new catheter in arm, and re-started drip....
Roxanne, Dr Somme, …. Hospital registrar. Had good talk. Cause of Mary's condition still elusive. Admits to puzzle. Tested, brain, chest, urine, skin - nothing positive. Will continue anti-biotics for 2-3 days. Dementia patients sometimes act "differently".
Orlando, Aiden, Odette and Hannah visited. No positive signs of recognition.
Spent day at hospital. Kaleb, 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.
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.
Mary improved today. Showed signs of recognition of people around her, e.g. Nurse, Beatrix, Hannah and family. Seemed to be trying to talk, e.g. 'go home' = I want to go home.
Mary showed some improvement today. Spoke a few words to nurse. Tried to speak throughout day. Looked more comfortable.
Maree and self visited during day. Kaleb at night. Beatrix Matthews called.
Conference between Dr … Sofit, Roxanne (registrar), Orlando, Maree, Kaleb and self.
Agreed: Anti-biotics cease. Not having any effect and continuation could cause side effects and diarrhoea.
Discontinuing feeding by cannula, except potassium. Feed subcutaneously into muscle in mid-body. Continue oxygen but finish feeding in 1 to 2 days.
Mary not alert enough to feed by mouth. Monitor, and if Mary becomes more alert, feed by mouth. Move to single room. Unlikely Mary will leave hospital. End will come any time from days to weeks. Mary alert this evening – strong grip; trying to speak, moving arms, etc.
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.
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.
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.
We put Ma to bed as usual on the night of … April 2009. Ma walked slowly from the lounge room, down the hallway to her bedroom asking as she did: 'where am I going? Where am I sleeping tonight?' We gave our usual reply: 'In your bedroom where you always sleep'. Satisfied, Ma snuggled comfortably between the sheets as we hugged and kissed her goodnight. She smiled and said 'thank you', and looking peaceful and contented, she dozed off. Little did we know that these were to be the last words we would speak.
Next morning I prepared her medication, 'Lewy medication' she called it, and took it to her bedside announcing my presence with a cheery 'Good morning, how did you sleep?' Ma didn't stir; she seemed to be sleeping soundly. I decided to let her sleep until Shania the carer arrived. We were unable to wake Mary and decided to give her a bed-wash and change of pull-up pants. Nurse visited and suggested Mary go to hospital by ambulance. I consulted Dr Nadia James who agreed. In hospital Mary had various tests - blood tests, X -rays, urine, etc., and placed on drip and given oxygen. Further tests tomorrow. We advised family of Mary's situation and then Orlando, Kaleb and Maree - visited this evening.
Ava-Leigh planning to come to Canberra from (interstate). I discussed further treatment with Dr Darcy Evans, including what action to take if any possibility of recovery passes. I expressed some surprise to be having this discussion at the time. Darcy explained that this was routine as it was preferable for the medical team to know the thoughts of the family when commencing normal treatment regime. Darcy explained that it could be days or even weeks before a decision needs to be made. For the rest of April, Mary remained in Hospital under treatment but showed no signs of recovery. Many friends visited daily.