This story is about my mother, Evelyn, her latter years and the impact dementia had on her and her loved ones. It’s a sequel to two earlier stories, My mother, a young woman (May 6, 2016) and A precious death (February 10, 2017). I’m sharing Evelyn’s experience – and ours – so that others in similar circumstances may find encouragement and strength to endure and not be consumed by this awful disease.
Evelyn lived with my husband Tony and me for the last eight years of her life, during which time she was an integral part of our lives. The eight years she lived with us divide evenly into two four-year periods. For the first four years (2003-2006), despite signs of early dementia, Evelyn was sprightly, able-bodied, healthy and independent. In contrast, during the second four years (2007-early 2011), Evelyn’s health deteriorated rapidly, and dementia took over her life – and ours.
Progressively, Evelyn lost the ability to perform simple everyday tasks, communicate, get around, and eat normally. There were personality and behavioural changes, not major ones, but serious enough to concern us and cause us grief. For the last 3-4 years of her life, Evelyn depended on others (primarily Tony and me) for her personal care and daily needs.
About dementia
Dementia is the term used to describe the symptoms of a large group of illnesses that cause a progressive decline in a person’s functioning. It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning.
There are many types of dementia including Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy body disease.
In 2021, an estimated 472,000 Australians are living with dementia. By 2028, this figure is expected to increase to 590,000.
In Australia today, three in 10 people over the age of 85 and almost one in 10 people over 65 have dementia. Dementia is the second leading cause of death of Australians.
Click HERE to read more facts and statistics about dementia.
The first four years (2003-2006)
In 2003, at 87, Evelyn sold her home in Rockhampton and moved to Brisbane to live with Tony and me.
Despite her advanced years, Evelyn was able to care for herself – choose her clothes and dress herself, take a bath, wash her hair, clean her teeth, use the toilet, make her own bed and tidy her room.
Much more than this, Evelyn was a great help to me around the home. I was working full-time, as was Tony, so Evelyn was home alone from 7:00 am to 5:30 pm Monday to Friday. To keep her occupied and ensure she felt useful (she often said “I want to be useful”), I gave Evelyn little jobs to do each day. They included pegging the washing on the line, bringing it in, folding the clothes, watering the garden, caring for our house plants, and meal preparation.
To organize the latter, from 2003 to 2006, I used a calendar diary to list the tasks Evelyn needed to do in preparation for the evening meal. (For the other jobs, Evelyn didn’t need instructions – she knew exactly what to do.)
I’ve written previously, in Pasta Bake (February 18, 2016), about Evelyn’s significant contribution to our evening meals. When I came home from work, everything was ready, chopped, sliced or grated to perfection, each item placed in its own little bowl. It was amazing! I felt like a TV celebrity chef, all the ingredients prepared and on hand. I simply combined the ingredients and cooked them! Tony would say, “Jamie, eat your heart out! We have the best kitchen hand in Australia.”
Evelyn loved our garden and whiled away many hours there. This is not surprising because, as long as I can remember, Evelyn had a beautiful garden of her own. She was one of those enviable people with “green fingers”. When Evelyn came to live with us, we acquired a live-in gardener as well as a super kitchenhand! In December 2003, Tony wrote to our family and friends:
The garden is producing masses of flowers and since Grandma is a good flower arranger and Judy loves flowers we have floating flowers in the centre of the table, delicate arrangements of daises, gardenias, agapanthus and cosmos, to name a few! Grandma now has two small garden beds for tomatoes and long beans, and a passionfruit vine. The cherry tomatoes are a legacy from the previous owners. Grandma waters the garden twice a day but some sections get watered once per day, some twice a week, some once a week – all news to me and quite difficult to follow now that Grandma is [away] on holidays in Rockhampton.
From the start, Tony and I made sure Evelyn knew that our home was also her home. Indeed, Evelyn loved our/her new home, and readily settled into her new life in Brisbane. As well as enlisting Evelyn’s help around the home, Tony and I included Evelyn in all aspects of our home life. For example, whenever we had guests for meals, Tony and I made sure Evelyn felt that our guests were also her guests.
At 87, Evelyn was still lively, sociable and willing to learn new things.
Tony and I endeavoured to keep her engaged and her mind active. After dinner, when there was nothing special to watch on TV, Tony and I would clear the dining table and the three of us played cards. At first, canasta was our game of choice. We even enticed our dinner guests to join in a game (or two). Of course, we all wanted to win and, much to our dismay (and surprise), Evelyn did so, on numerous occasions.
As well as canasta, we taught Evelyn how to play a simple card game called “Sevens”. Later, when Evelyn was no longer able to play canasta (hold the cards, remember the rules), sevens was our fall-back game. At first, Evelyn would win at that too! However, with failing eyesight Evelyn began to complain, “I cannot see the numbers.” So, as a Christmas gift in 2005, our daughter Ruth bought her grandmother a set of playing cards with extra large numbers. So, we kept playing sevens – for at least another year.
Every Sunday morning, Tony and I took Evelyn with us to church.
She loved our church (St Andrew’s Anglican Church South Brisbane) and made lots of new friends there. One of them invited Evelyn to join a monthly (later fortnightly) “Sharing Group”. Evelyn happily accepted the invitation and, at 87, joined a Bible study group for the first time in her life. Most members of the group were women of Evelyn’s “vintage”, so she fitted in well.
Evelyn was a member of the group for at least four years. She enjoyed the fellowship and the Bible discussions but wasn’t keen on too much afternoon tea (“I won’t be able to eat my tea,” she would say) or the homework (as she called it). Tony and I would help her with her homework. But there was one task she did alone. Each fortnight, she wrote a prayer to share with the group. Not confident to say or compose a prayer of her own, she used to copy prayers from one or two little books of prayers she owned. I’ve kept copies of most of her handwritten prayers. (They are very precious to me.)
Tony and I encouraged Evelyn to join a local senior citizens’ group. We wanted her to have another channel through which to make friends and a chance to get out of the house during the week when we were at work. But she refused and couldn’t be persuaded to change her mind, even though we raised the subject a number of times.
By 2005, Tony and I were aware of Evelyn’s cognitive decline.
In August 2005, Tony wrote to our family and friends, “Grandma is fading in the mind”. Evelyn would watch a serial, movie or game of sport with us on TV, but when we asked her about it, she had no idea what was happening. Clearly, she could no longer follow a storyline or game. She told Tony more than once, “I hate the ads. They make me forget what I have just seen.” Evelyn often joined Tony to watch TV broadcasts of National Rugby League (NRL) games. She followed the Brisbane Broncos. Tony recounts a typical scenario:
The Broncos are about to score.
Evelyn (calling out): “Come on, boys!”
Tony (shouting): “Yes! Yes!”
The commentator announces a try.
Evelyn (to Tony): “Did we score?”
From 2003 to 2006, when Tony and I went away for our annual holidays, Evelyn went away too. She would spend 4-6 weeks with my brother and sister-in-law, her “other” family, who lived over 600 kilometres away, near Rockhampton. It was a win-win situation for us all. During Evelyn’s visits in 2005 and 2006, my sister-in-law Stephanie noted the early signs of dementia. After Evelyn’s 2006 visit, Stephanie said, “She’s nearly as bad as mum.” (Stephanie’s own mother had dementia.)
By the end of 2005 Tony and I were concerned that Evelyn may have a fall in the house or garden when we were at work. So, in March 2006, we had a VitalCALL service connected to our home. For Evelyn, it meant that, whenever she was home alone, she wore a pendant, a personal alarm device equipped with a button to press if she needed assistance. Once triggered, the pendant sent a signal to a base unit, which in turn called the VitalCALL response centre. Not that Evelyn ever needed to use it, then at least.
Evelyn celebrated her 90th birthday on 14 January 2006.
We told her that her friends from the St Andrew’s Sharing Group were coming to our home for afternoon tea. We didn’t tell her we had invited about 40 people – including family and friends from as far away as Rockhampton – to help her celebrate her 90th birthday. She was surprised and excited, of course, but took it all in her stride. She looked beautiful, sprightly and a picture of health. Few present that day would have guessed that Evelyn was living with early-stage dementia.
In May 2006, fearing that Evelyn’s memory was fading fast, I decided to write her lifestory.
Researching and writing Evelyn’s story was one way I could stay connected with Evelyn, stimulate her thinking and keep her memory alive for as long as possible. I made sure Evelyn was an active participant in the process, even though I soon discovered that she had already forgotten many details of her earlier life. Fortunately, I remembered things she and her mother (“Nan”) had told me over the years, so I was able to fill in many of the gaps myself.
Importantly, Evelyn had a large collection of photographs and negatives, newspaper clippings and memorabilia, which together we examined, discussed, and I sorted. Some of the photographs were annotated, some were dated, but many were neither annotated nor dated. Evelyn was able to tell me a little about some of them. After I left full-time employment in 2007, I had time and opportunity to conduct the research needed to identify people, places or dates for some of the photographs, especially the wartime ones. During 2007-2008, I did a lot of research online and at the State Library of Queensland, and I even arranged for Evelyn to meet one of her wartime colleagues (after 60 years!).
What I produced over a 2-year period was a photographic record of my mother’s life to accompany her lifestory. There are three volumes, three large, annotated photo albums. While Evelyn was alive, I completed Volumes I and II, covering her life from 1916 to the end of the 1960s. Volume III remains unfinished.
As Evelyn’s memory faded, I found that the photo albums helped her recall and recount important events in her life, marvel at experiences long forgotten, remember people who had been part of her life, and be thankful.
Researching and writing Evelyn’s lifestory taught me a lot about my mother but it was also instructive for me personally. It helped me realize the necessity and importance of upholding the dignity of older persons (like Evelyn), and honouring them, despite their failing competencies. It also helped me deal with my own grief and pain during the years I witnessed and dealt with Evelyn’s gradual physical and mental decline as the dementia took hold.
Throughout 2006 Evelyn seemed to be doing so well, apart from increasing confusion and memory loss.
Evelyn led an ordered life, which helped her feel safe and secure. She continued with her daily household tasks when Tony and I were at work – hanging out and collecting the washing, folding the clothes, and preparing for the evening meal. She stopped watering the garden, though, because of water restrictions imposed on households by the Brisbane City Council. Truly, the latter was a blessing in disguise.
The crisis
On Friday 10 November 2006, Evelyn was clearly unwell. She couldn’t keep any food down. She was deathly pale, clammy and distressed. I could tell she was in a lot of pain. By 6:00 pm that evening, Evelyn was admitted to The Wesley Hospital. The diagnosis: A suspected abdominal blockage.
It wasn’t until Monday 13 November, following a colonoscopy, that the diagnosis was confirmed. Evelyn had a huge bowel tumour, which required immediate removal. The hospital’s appointed surgeon emphasised that if the mass was not removed promptly, Evelyn would die. He wanted to operate that night and needed my permission to proceed (I had enduring power of attorney).
The surgeon issued me with the following warnings. First, given Evelyn’s age (90), the anaesthetic may have negative side effects, including cognitive dysfunction (long-term memory loss, an inability to learn, concentrate and think). Second, the surgery will require a colostomy, a procedure that brings a small protrusion of the colon (bowel) through an incision in the abdominal wall, forming a stoma (exit for waste matter). Third, Evelyn’s colostomy may be temporary (reversible) or permanent, depending on her response to the anaesthetic and how long they can safely keep Evelyn sedated. Producing a temporary colostomy, as opposed to a permanent one, is a longer procedure.
The result? After four hours of surgery, Evelyn ended up with a permanent colostomy. The surgeon reported there was no evidence that the tumour had spread to other organs, and no further treatment (chemotherapy or radiation) was necessary.
The day after the operation, Tony and I, and my brother (who flew down from Rockhampton), visited Evelyn in the hospital’s intensive care unit. Despite our worst fears, our 90-year-old mother was awake and bright as a button. We were greatly relieved, and so happy for her.
In all, Evelyn spent three weeks in The Wesley Hospital, then two weeks in post-operative rehabilitation at Canossa Private Hospital. Evelyn returned home on 15 December 2006.
Little did Tony and I realise just how much Evelyn’s surgery and resulting colostomy would affect her life – and ours.
At the time we naively believed that Evelyn would resume her life as it was before the operation. But that was not to be. The three of us had much to learn and many adjustments and adaptations to make in the ensuing months and years.
The second four years (2007-early 2011)
By mid-March 2007, I realised that Evelyn was no longer able to look after herself. Three months had passed since Evelyn returned home, and I was exhausted. I was trying to care for Evelyn while working full-time in a stressful high-level government job and I wasn’t coping very well with either.
So, at the end of March 2007, in order to care for Evelyn, I resigned from the Queensland Public Service. I was nowhere near retirement age, and I could have taken extended leave, but I chose to put my mother’s care before my own career prospects. It’s a decision I’ve never once regretted.
Evelyn’s needs at the time were great. She couldn’t manage the colostomy (look after the stoma, put on the baseplates, change the bags, recognise when a bag needed changing), take a shower unattended, make decisions about what to wear, or dress herself without help.
What I found most difficult was Evelyn’s initial lack of understanding about what was happening to her. It was like she was still living, but in another body, not her own. I shouldn’t have been surprised, though, given Evelyn’s age (90) and knowing that she was in the grip of dementia. Evelyn had to come to terms with the loss of part of a vital organ (the bowel) and adjust to a strange new way of eliminating body waste.
Managing Evelyn’s colostomy
The biggest challenge for me in those early days was managing Evelyn’s colostomy. I had to learn how to look after Evelyn’s stoma, keep it healthy (it was still healing), change the colostomy bag, deal with the numerous leakages (“accidents”), and most importantly, help Evelyn adapt to this new reality. It was not easy – for her or for me. At times, we both felt “out of control”, unable to cope, impatient, sad, even teary. At other times, we felt relieved, optimistic, that we were coping well and had the situation under control. Through this period, I think both of us experienced a rollercoaster of emotions.
As I look back now on the four years Evelyn lived with a colostomy, I am full of admiration for the way Evelyn maintained her dignity and self-respect throughout this period. I was not the only one who changed Evelyn’s colostomy bag or cleaned up after the accidents. Tony was my regular back-up. Our daughter and son learnt how to change their grandmother’s colostomy bag and did so on numerous occasions when they looked after Evelyn. Others, including friends, who helped us care for Evelyn from time to time, also learnt how to change the colostomy bag and be alert to Evelyn’s bowel movements. After all, with a stoma, the person no longer has muscle control of their bowel movements.
Whenever a bag burst and its contents spilled everywhere, Tony and I had to undress Evelyn and pop her under the shower. (She sat on a chair in the shower recess.) Poor darling. I think that must have been so humiliating. But Evelyn did not complain. She was always so thankful for the care others gave her. This grace and thankfulness extended to the end of her days, even when the dementia took hold and she had so few words to say. I always knew she appreciated what I did for her. She never forgot how to say, “Thank you.”
Once a month, I ordered Evelyn’s colostomy supplies from the Queensland Ostomy Association. (Evelyn was not capable of doing this herself.) I had to make a judgement as to how many baseplates and bags (“pouches”) Evelyn would need for the next month – no more, no less. Under the Federal Government’s Stoma Appliance Scheme, local ostomy associations purchase appliances from the product companies and claim reimbursement from Medicare or the Department of Veteran’s Affairs.
To obtain her colostomy supplies, which were free of charge to approved ostomates, Evelyn had to become a member of the Queensland Ostomy Association (with an annual membership fee of about $60). The only other cost was a delivery charge of $12 per month. A carton of colostomy supplies arrived by post each month. It was an amazing service, for which Tony and I were ever so grateful.
As time passed, Tony and I recognised that Evelyn’s colostomy was, in fact, a blessing. We were able to manage Evelyn’s bowel output, via the colostomy bags, and never once did we have to wash soiled bed linen. It also meant that we had very few problems with Evelyn’s hygiene. The routine we developed in managing Evelyn’s colostomy in 2007 helped considerably in the months and years ahead, as we adjusted to the changes brought about by Evelyn’s dementia.
Respite
Once I took on the responsibility of caring for Evelyn full-time, I became aware of the necessity of respite – for me and Tony, and for Evelyn. I found that, when caring for someone with dementia and special needs, it is important to take regular breaks, to maintain outside interests, to relax and recharge. Tony was a great help in this regard, assisting me with Evelyn’s care whenever I needed an extra pair of hands, and giving me “time out” so I could continue my church and community-based activities and have a reprieve from my caring responsibilities. As for Evelyn, she appreciated the respite and the variety of enjoyable and different activities and people respite gave her.
Day respite
In December 2006, on the advice of the rehabilitation staff at Canossa Private Hospital, I organised day respite for Evelyn. Tony and I were still working full-time, and we could no longer leave Evelyn home alone. Thankfully, given her new circumstances, Evelyn agreed to give day respite a try! So, on 15 January 2007, when I returned to work after annual leave, Evelyn attended the Uniting Care Henderson Day Respite Centre for the first time. And she loved it! (I had to bite my tongue because I wanted to say to her, “We wanted you to go there before, but you refused. Now you know what you have been missing!”)
At first, Evelyn went to the Henderson Centre four days a week. On the fifth day, Tony took her to the home of one of our church friends, a dear lady who was willing to look after Evelyn for the day. This arrangement lasted for three months, at least until I left my employment and took on Evelyn’s care full-time. From that time onwards, until late 2010, Evelyn attended the Henderson Centre three days a week, from 9:00 am until 3:00 pm. This arrangement worked really well for Evelyn (she loved the activities, the staff and the friends she made there) and it gave me and Tony much-needed regular breaks from our caring responsibilities.
To show our appreciation for the important role the Henderson Centre played in Evelyn’s latter life, Tony and I invited one of the staff to be a pall bearer at Evelyn’s funeral service.
Short-term residential respite
In early 2007, I arranged for Evelyn to have an Aged Care Assessment Team (ACAT) assessment. As a result, Evelyn was deemed eligible for 63 days of short-term residential respite care each year. In April 2007, for the first time, Evelyn spent a week away from home, in a residential care facility.
Tony and I planned a road trip from Brisbane to Charleville (a distance of 745 km), to visit our daughter, son-in-law and 9-month-old grandson (Evelyn’s great-grandson) and we wanted to take Evelyn with us. She was well enough to travel, and we thought the time away would be good for her. (Actually, Evelyn had been to Charleville with us before, in April 2005, except on that occasion we flew there and back.)
The sleeping and toilet facilities at our daughter’s home were not suitable for Evelyn’s needs, so I arranged accommodation for Evelyn at Waroona, the residential care facility attached to the Charleville Hospital. Evelyn slept there, showered and toileted there and had breakfast and most evening meals there. But we’d pick her up and take her with us on outings each day.
This arrangement worked really well. It enabled Evelyn to join Tony and me on the trip, which was a real blessing for her, and our family. Sadly, however, it was the last time Evelyn was well enough to go away with us for more than a day or two.
During the next 3-4 years, when Tony and I took holidays, I organised short-term residential care for Evelyn. For the first couple of times, Evelyn understood and quite happily accepted that these breaks away from home were necessary – for her and for us. However, as Evelyn’s dementia progressed, she became increasingly anxious about leaving home, fearful that we were taking her to the care facility and leaving her there for good.
In the later stages of Evelyn’s dementia, any changes in environment or routine impacted negatively on her. In 2010, for example, after a two-week stay in a residential care facility, Evelyn returned home disoriented and confused. We understood that this is not unusual for a person living with dementia, but it still upset us. Sadly, after each short stint in residential care, it took several weeks for Evelyn to readjust to life at home.
In-home respite
In-home respite care was a much better option for Evelyn. In this arrangement, she stayed in a familiar environment and maintained her usual routines. When Tony and I needed to go out together, or go away for 2 or 3 days, I organised for our son, daughter or a family friend to care for Evelyn at home. On one occasion, our daughter and son-in-law stayed here with Evelyn for a couple of weeks while Tony and I were away. On another occasion, my brother and sister-in-law came to stay for a few days to look after Evelyn while Tony and I were away.
From time to time, Tony and I called upon one of two or three of our friends who cared for Evelyn. Begonia was one of these treasured friends. She stayed at our home and cared for Evelyn when we went away for the weekend on at least three occasions in 2008, 2009 and 2010. Furthermore, from September 2010, when Evelyn was no longer able to go to church with us, Begonia would come to our home on Sunday mornings to keep Evelyn company while we were out. Tony and I could not have done without her! Begonia was such a blessing to Evelyn – and us.
As part of her caring role, Begonia chose to keep records for us of Evelyn’s daily activities and the food she prepared for Evelyn. Here are samples of the notes she made:
Sat 27 Nov
Morn. Initiated herself -> toilet trip several times. Morn: Enjoyed “Oklahoma” and cricket. Asked lots of questions (11-12): “When are Judy and Tony coming home?” “Did they have a long drive?” “Is it Tony’s birthday?” Arvo: Watched “Sound of Music”. 4:00 pm. Asked to go and lay down, rested ½ hour, then up -> shower. Sang to “Sound of Music”: ‘Edel Weiss’ and ‘My favourite things’. When asked what she would like for dinner, Evelyn replied, “What’s easiest for you.” Dinner: Put tin of tuna in with mashed veges for Evelyn.
Sun 28 Nov
At breakfast, Ev asked, “What’s Judy doing today?” Ev dozed on and off most of the morning in the lounge chair watching cricket. After lunch, listened to music – in living/dining area; toilet, watched cricket. 1:30 pm. Evelyn decided to go to have a rest on her bed. She went to the toilet, came out and asked, “Shall I go to bed?” I said, “You wanted to rest.” She turned around, changed her mind – to go back to the lounge/TV.
The dementia gains hold
It didn’t take me long to discover that Evelyn’s surgery (in particular, the anaesthetic) had negatively affected her cognitive functioning. The changes included further short-term memory loss, increasing forgetfulness, poor or confused recall of events, distorted recall of past events and people, loss of language, and inability to perform everyday tasks.
By the end of 2007, the effects of dementia on Evelyn’s cognitive functioning were obvious. After every explanation I gave, Evelyn would say, “I see. I see.” Almost every day she would ask me, “What day is it?” and “Do I go to the Centre tomorrow?” Whenever Evelyn spoke about her late husband (he died in 1999), she would say “Your dad…” or “My husband…” She never used his name. In fact, in June 2007, Evelyn asked me, “My husband – what was his name?” Evelyn still walked unaided, but her mobility was declining. In late 2007, I wrote in my diary: “Evelyn shuffles along, using slow, tentative, mincing steps… with sighs, snorts and whimpers.”
Over the next three years, the dementia brought about changes in Evelyn’s behaviour and personality. A once lively, active and sociable person became sluggish, withdrawn and often disconnected from what was going on around her. A happy, pleasant, mild-mannered person became (at times) grumpy, defensive, even aggressive. There were times of restlessness and confusion, but also times of quiet and apparent calm.
Eventually, Evelyn lost the ability to make her own bed, dress herself, do her own hair, use a knife and fork, and eat normally. In the later stages of the disease, she developed “fetishes” like taking a favourite cushion with her from room to room, putting pieces of folded toilet paper in the pockets of her trousers and cardigans, storing lollies in a coin purse. (I hasten to add, I found these, and other strange behaviours, hard to deal with.)
Evelyn’s ability to communicate suffered the most.
At first, she couldn’t find the words to say and she repeated herself a lot. She lost the ability to write. Later, she spoke only when spoken to, softly, and with few words. “Grandma not good, not communicating.” (Diary entry, 2 May 2009) “Grandma okay, but not interacting.” (Diary entry, 24 August 2009).
By 2010, Tony and I had to work hard to have any kind of meaningful communication with Evelyn. Here is one example. It was my birthday. As a way of engaging Evelyn in conversation, Tony asked her how old I was. This is how the conversation went:
Tony: How old is Judy today?
Evelyn: “Ninety-two.”
Tony: “No. Try again.”
Evelyn: “Forty.”
[Laugher.]
Tony: “One more try.”
Evelyn: “Sixty.”
[More laughter.]
Me: “That is much closer. What is your relationship to me?”
Evelyn: “I think I’m your mother.”
Me: “That’s right. You were there when I was born. You’ve known me my whole life long.”
2007 was a difficult year for Evelyn. Not only did she have to adjust to living with a colostomy, but also cope with two fractured vertebrae. In August 2007 x-rays revealed crush fractures of the T4 and T6 vertebrae, which Evelyn’s General Practitioner (GP) suggested may have occurred when Evelyn turned over in bed! Then, one Sunday in September, Evelyn fainted in church. It nearly happened again a week later. In a letter to friends in October 2007, Tony wrote:
Grandma is doing well but she has given us a fright for the last few Sundays. … The first time (three weeks ago) the rest of the congregation was going up for communion and was she going out on the ambulance stretcher! All checked out well…it seems that she was dehydrated. She doesn’t like Saturday nights anymore – she has to drink more than usual! Well, she did try to repeat the episode a week later! And last week…well she did look rather pale.
And in the same letter Tony continued:
Looking after “mother” has been taxing – Judy is often exhausted by the constancy of the responsibility, the pain of seeing her mother deteriorate, the nature of the care and the running around. The episodes mentioned above did not help!
2008 brought more challenges for Evelyn (and me). I lost count of the number of times I took Evelyn to see her GP that year. The visits began in February 2008. The problem? Evelyn had a sore right leg and trouble walking and she was not at all happy. She seemed depressed. One day she vomited after breakfast, another day she had diarrhoea. Her thoughts were disturbed. She could no longer walk unaided. The following notes from my February 2008 diary are a reminder of that time.
1 February: Evelyn having trouble walking – sore right leg – took her to see Dr Joyce.
5 February: Evelyn is forgetting things, e.g., she asked me tonight in the context of [my brother] Bevan’s age and mine, “Is there anyone in-between? Lucy? Jono?” I replied, “Don’t you know how many children you had?” She said, “No, I don’t remember.”
6 February: A hard day. Mum vomited soon after breakfast, still unable to walk. Contacted Dr Joyce, asked for referral to Xray leg – eventually appointment made with Mount Ommaney. Went to two pharmacies to hire wheelchair ($100 deposit, $15 per week) – heavy, hard to lift to boot of car. Took Mum to Mount Ommaney (11:15 -11:45); took Mum to coffee at Mt Ommaney Gloria Jeans, walked, pushing wheelchair, footrest caught in escalator (at top). Picked up Xrays at 1:00 pm, back home, to Dr Joyce at 2:50 pm. Xray shows no breaks, just “wear and tear”. Home again. Exhausted!!
7 February: Morris Surgical supplied wheelchair, wheelie walker, frame. Handrail attached to shower recess.
8 February: Evelyn went back to the Henderson Centre – coped well.
10 February: Evelyn used the wheelie walker today – doing better. But having trouble getting food onto her fork, and into her mouth.
20 February: Mum’s leg sore again, hot, phoned Dr Joyce to ask his advice. Mum had diarrhoea today, seems depressed.
22 February: Took Evelyn to Dr 2:50 pm – sore, hot knee, sores on legs, Dr Joyce prescribed Keflex – possible urinary tract infection and infection in bone/joint tissue of knee (Streptococcus).
New furniture, equipment, and a new car
From the time Evelyn returned home after the surgery in 2006, Tony and I made various modifications to our home, more so as Evelyn’s dementia took hold. We purchased or acquired new pieces of furniture or equipment, designed to make Evelyn’s life more comfortable and ensure her safety.
In December 2006, we purchased an electric lift and recline chair for Evelyn. It was intended for her use in our lounge/TV room. By pressing a button on the handset attached to the chair, Evelyn could raise or lower the chair and the footrest. To get out of the chair, Evelyn had to raise it so she was close to a standing position. Not that Evelyn ever did this for herself. Most of the time Tony and I managed it for her.
When we moved from Rockhampton in 2003, we brought with us a shower chair Evelyn used when caring for her late husband. Tony and I put it to use straight away after Evelyn’s surgery and had a shower hose added to the shower recess in her bathroom.
In February 2008, given Evelyn’s mobility problems, we acquired quite a few new pieces of specialised equipment. Within days of Evelyn’s visit to the GP, an occupational therapist arranged for Evelyn to be supplied with a wheelchair, wheelie walker and toilet frame, and a handrail to be installed in the shower recess. Evelyn was entitled to these items free of charge as she was a gold card holder under the auspices of the Department of Veterans’ Affairs (DVA).
Evelyn used the wheelie walker from mid-February 2008. Up until late 2009, she used it at home and when she went out. However, from early 2010, because of her decreasing mobility and frailty, Tony and I used the wheelchair when we took her on outings. Evelyn continued to use her wheelie walker at home and at the Henderson Centre.
Without doubt the biggest purchase Tony and I made during the period 2007-early 2011, was a new car. In March 2007, we traded in our 1993 Volvo sedan for a brand new Nissan X-Trail. It was a good decision. For Evelyn, who always sat in the front passenger seat, getting in and out of the X-Trail was so much easier (and safer) than getting in and out of the Volvo. The X-Trail was much higher off the ground.
Eating and drinking problems
By 2008, it was clear that the dementia was affecting Evelyn’s eating and drinking habits. Although we maintained a routine of three meals a day (shared with Tony and me), and morning and afternoon teas, Evelyn’s food intake had decreased considerably, and I had to continually monitor her fluid intake.
For breakfast, Evelyn had a bowl of cooked rolled oats, milk and sugar, followed by a small cup of decaffeinated coffee with milk and sugar, and ½ glass of water with her morning tablets. I had to check she drank all the water – she tried not to, as she had a huge fear of incontinence – so it was sometimes a battle of wills (to get her to drink all her coffee and the water too).
For lunch, Evelyn ate one slice of bread or toast made into two little sandwiches, followed by a small piece of fruit and/or a biscuit with a cup of decaffeinated coffee. That’s all.
For dinner, Evelyn ate a small portion of the main meal I prepared for Tony and me. If it included meat, I would cut the meat into tiny pieces to encourage her to eat it along with the vegetables, rice or pasta. And, for dessert (Evelyn loved her sweets), almost every evening, Evelyn asked for banana and custard.
Evelyn’s eating and drinking habits continued to change as the dementia took hold. During 2009 I noticed that Evelyn was no longer able to use a knife and fork. So, I made sure I provided Evelyn with food she could manage using only a spoon or (as appropriate) her fingers. It was around the same time Evelyn started to wear a “bib” at mealtimes.
By March 2010, Evelyn had difficulty swallowing. By June 2010, Evelyn was no longer able to eat bread or manage a sandwich. To get the bread into her mouth, she gnawed at it (she had forgotten how to bite), then sucked it (she had forgotten how to chew). If she swallowed any of it at all, she regurgitated it later (which was not nice). From this time forward, I had to mash or puree all of Evelyn’s food, or provide food (like yoghurt and custard) she could safely and easily swallow.
Another difficulty for Evelyn at mealtimes was “seeing” the food on (or in) her plate. In trying to access the food, she would hit the plate with her spoon and often miss the food altogether. We realised that light-coloured food on white plates was part of the problem, so we purchased a set of black plates, bowls and cups (as in the previous photograph) to use instead of our white crockery. And this helped Evelyn considerably!
The last piece of furniture (equipment) that came into our home, in 2010, was an armchair to help Evelyn sit safely and comfortably at the dining table.
Continence and sleep issues
Continence issues are not limited to older people living with dementia, but dementia certainly heightens the sufferer’s concerns about incontinence. This was Evelyn’s problem. She was always worried about not making it to the toilet in time or wetting the bed. She would visit the bathroom numerous times each day. From about 2006, Evelyn wore a continence pad inside her panties, day and night.
From as early as 2003, Evelyn used a commode chair and potty at night. The chair stood near her bed, so that when she got up during the night, she didn’t have to go to the bathroom. Evelyn kept a torch on her bedside table. For extra visibility at night, we added a nightlight to her bedroom.
As Evelyn’s dementia progressed, Evelyn’s sleeping habits changed. In the day, she often dozed off sitting in her lift and recline chair. At night, she woke often to use the potty. I know because of the dreaded cowbell and bedside alarm mat. Let me explain.
From the beginning of 2007, I added a cowbell to the items on Evelyn’s beside table. As Evelyn’s bedroom was upstairs and ours downstairs, I told Evelyn to ring the bell whenever she needed help during the night. That cowbell turned out to be both a blessing and a curse. It was a blessing when Evelyn rang it because she needed help; it was a curse when she rang it every time she got up to use the potty!
Remember the VitalCALL system we had installed in our home? At night, Evelyn would take off the pendant and place it on her bedside table. A couple of times, in 2007, she pressed the button on the pendant to let me know she was awake! Almost immediately, we received a response from VitalCALL, the caller asking, “Are you all right, Evelyn?” After the second or third time this happened, I made sure the pendant was out of sight when Evelyn went to bed!
Once or twice Evelyn fell out of bed during the night. The most frightening incident occurred in February 2009. On this occasion, it wasn’t the ring of the cowbell that awoke me. At 4:30 am, I awoke to the sound of faint banging. When I went upstairs to check on Evelyn, I found her on the bathroom floor, awake, confused (she spoke about trying to get the cat, and looking for her torch), but otherwise she was okay. All her bedclothes were tossed up and the bed cover lay in a heap on the floor. I called Tony to come and help me lift Evelyn off the floor. We sat her on the toilet seat, changed her panties and her clothes (they were all wet), and reassured her that all was okay. After remaking her bed, we gave her a drink of water and a couple of Panadol tablets and put her back to bed. By then it was about 5:00 am.
As it turned out, this incident was triggered by a change in Evelyn’s medication. We reported the incident to Evelyn’s GP and, together, we agreed never again to give Evelyn the analgesic Tramadol.
As a result of this incident, I considered purchasing a bedside alarm mat for Evelyn’s room. You may have seen these in hospital rooms. My sister-in-law offered to give me the musical alarm mat she had used when caring for her mother. I accepted her offer, and my brother brought the mat to Brisbane in July 2009, when he came to stay with us for a few days and spend time with Evelyn.
Well, the musical mat certainly worked! Every time Evelyn got up out of bed, for whatever reason, the mat played a tune. It had a repertoire of about 20 nursery rhymes, including “The Grand Old Duke of York”, “Polly Put the Kettle on”, “Three Blind Mice”. You had to choose which tune it would play. Oh, how I got to hate hearing “The Grand Old Duke of York” for the twentieth time! Needless to say, we didn’t use the mat for very long. I just couldn’t cope with it.
By mid-2010, Evelyn had to wear continence pants to bed at night. No longer was she waking in time to use the potty, nor was she getting up as often during the night. In fact, she was sleeping up to 12 hours a night.
In early December 2010, Tony and I took Evelyn to a residential care facility, where I had arranged for her to stay for several weeks while we were away. She was not happy going there. But we reassured her that she would be well cared for, and that we would be back soon to pick her up and bring her home.
But that was not to be. Evelyn never returned home.
She had a fall at the care facility, came down with a urinary tract infection, and ended up in hospital. I have written previously, in some detail, about Evelyn’s last days, in A Precious Death (February 10, 2017).
Evelyn died peacefully on 30 January 2011. She was 95.
EPILOGUE
Ten years on, Tony and I recall with much gratitude the grace our Lord gave us to be able to enjoy the eight years Evelyn lived with us and cope with the changes and difficulties that came our way, especially during the second four-year period when the dementia set in.
I loved my mother dearly, and I consider it a great privilege to have had the means and opportunity to care for her in her later life. However, I can honestly say there were times (especially during the last couple of years) when I thought, “This is too hard. How much longer can I do this?” I know for sure I couldn’t have done it without Tony’s 100% support and assistance.
I did lots of reading about dementia: What is it? What are its early signs? Who gets dementia? What are its effects? How does it impact on families and carers? I bought a number of books on the topic of dementia to add to what I found online. I couldn’t learn enough about the disease.
In March 2009, Tony and I attended a 2-day course “Living with Change”, an Australian Government initiative, conducted by Alzheimer’s Australia (Queensland). The program used group discussion to help family and carers (like us) better care for ourselves and our loved one with dementia, by providing practical ideas for coping at home. It came at just the right time for Tony and me.
Looking back, Tony and I thank God for everything we discovered about life, ourselves, and dementia, during the years we cared for Evelyn. We learnt that, when confronted with seemingly insurmountable difficulties, there is always hope, a way forward, and an opportunity to show love, compassion and understanding.
Tony and I promised my father (he died in 1999) that we would look after Evelyn. We kept that promise. Not grudgingly, but joyfully.
Truly, of Evelyn, I can say, “I thank my God upon every remembrance of her.” (Philippians 1:3-6)
REFERENCES
Australian Council of Stoma Associations Inc (ASCA). (2021). (Website). Online: https://australianstoma.com.au/
Queensland Stoma Association. (2015). (Website). Online: https://qldstoma.asn.au/
Dementia Australia. (2020). (Website). Online: https://www.dementia.org.au/
Commonwealth of Australia. (2006). Dementia – The Caring Experience: A guide for families and carers of people with dementia. Canberra: Commonwealth of Australia.
Buijssen, H. P. J. (2005). The simplicity of dementia: A guide for family and carers. London: Jessica Kingsley Publishers.
MacKinlay, E., & Trevitt, C. (2006). Facilitating spiritual reminiscence for people with dementia: A learning guide. Barton, ACT: Centre for Ageing and Pastoral Studies, St Mark’s Theological Centre.
Davis, R. & Davis, B. (1989). My journey into Alzheimer’s disease. Wheaton, Illinois, USA: Tyndale House Publishers.
Kennedy, P. & Kennedy, R. (2003). Suffering in slow motion: Help for a long journey through dementia and other terminal illnesses. Ann Arbor, Michigan: Servant Publications.
Cameron, A. (2014). Living in the next phase: developing the theology, practice and ministries of later life. Sydney: Anglican Deaconess Ministries Limited.
Chapman, J. (2007). Making the most of the rest of your life. Kingsford, NSW: Matthias Media.
Thank you for the beautiful story of your mother’s last years It must have been difficult to write, but it has given me a much greater understanding of the processes and stages involved.She was truly loved.
Thank you for your feedback, Nancy. You are exactly right – this story was very difficult to write, and I have been working on it for several months. I’m so pleased you found it helpful, giving you a much greater understanding of the processes and stages involved in living with dementia. And, yes, she was truly loved. Many blessings, Judy.
Thank you for the beautiful story of your Mother’s years with dementia. While reading, I would have thought I was reading the story of my late Mum from the early stages in her sixties until the disease had taken over her body and mind with death in late 2018. During that time, we lost our Dad, who was caring or, should I say, covering up Mum’s issues. Within a month, Mum was diagnosed with Bowel Cancer, and we then realised there was no way she would survive in their aging old house by herself. Mum entered our local nursing home after her operation, where she spent the last seven years of her life. Mum was happy, joined in activities and weekly outings with the other residents. I suppose it did help that I worked in the office at the nursing home, which was near her bedroom.
Dear Lyn. Thank you so much for sharing your personal story with us. Yes, there are so many similarities with your mother’s circumstances and mine. How blessed you were to be able to find a care home where you were able to see your mother every day at work, and know that she was so well cared for. A wonderful outcome all round. Best wishes, Judy.
Thank you for writing this.
Thanks, Pattie. I hope you found it helpful. Best wishes, Judy.
Thank you Judith for sharing your Mothers last years spent living with you and Tony.It is a story that has to be read. Evelyn was so lucky to have you and others in her life..Looking at Evelyn’s 90th Birthday photo you would not know that she was in failing health.It was good of you for putting your Mum first before your career prospects.Another nice photo of your Mum was Mothers day 2007.I guess you would of had to break your car trip out to Charelville. How handy was it for you that Charelville had a room for your Mum. Judith you are losing your cooking skills Custard in a carton ha ha.I liked the lift chair that you got for your Mum I have one similar and put my feet up watching the TV. I invited people from the Demetia society as guest speakers at one of our Pensioners meetings. A brother in law ended up with Demetiaand passed away.
Dear Maurie. I really appreciate your insightful feedback. You are right about the photo of Evelyn at 90 – she looked so beautiful then, a picture of health. The surgery at the end of that year hastened the progress of the dementia. I too like the photo of her on Mothers’ Day 2007. She was doing so much better by then, after a difficult start to 2007. On that trip to Charleville, which we did in one day, we had several stops. But throughout the trip, Evelyn would say, “Are we nearly there?” “Are we halfway there yet?” She did so well, considering. The facility at Charleville was just perfect for her needs. You are very naughty making allusion to my cooking skills…Yes, I always bought the custard, even though I know I could have made it myself. I’m pleased to hear you have an electric lift and recline chair. Make sure you continue to enjoy it for many years to come! Easter blessings, Judy.
CONGRATULATIONS! Your blog has been included in INTERESTING BLOGS in FRIDAY FOSSICKING at
https://thatmomentintime-crissouli.blogspot.com/2021/04/friday-fossicking-2nd-apr-2021.html
Thank you, Chris
Heartwarming, sad and also wonderful… not an easy story to write, nor share, but I’m sure many others on this journey will appreciate your honesty and insight as they also travel this path. I considered it an honour to help my brother care for our Dad.
Dear Chris. Thank you for adding this story to Friday Fossicking. Thank you also for your encouraging comments, and for sharing about your own dad. Many blessings, Judy.