As told to Spencer D Gear
I know this Christian couple. This is a wife’s first-hand account of living with her husband’s recently diagnosed and developing dementia. The names have been changed, along with a few details, to protect their identity. Barbara is the wife and Doug is her husband.
I hope you don’t skip over the lead-in to this story because it shows how a person can move from normal living to experience dementia. For Doug, there was a small beginning of memory loss, then dementia began and it is accelerating.
The first person (I, me and my) is Barbara speaking.
Doug and Barbara’s previous lives
Doug’s first wife, Kay, suffered for 7 years with ovarian cancer. This meant that little housework was done inside or outside the house as Doug supported Kay in his own way. Towards the end of her life, Doug did not cope well with the situation. He continued his regular job for 5 days a week, starting at 6am and until late. It was one of those jobs with unpredictable hours of finishing.
Doug was a Christian and the women from the church and neighbours brought meals for them, did ironing, house cleaning, and other jobs around the house. Kay passed away in 2008.
Doug has 3 children, a girl & 2 boys. Barbara has 2 girls to her first husband. They were together for 31years and Barbara was living alone for 20 years before marrying Doug.
Now let’s hear the story from Barbara’s point of view.
Doug’s new life
Doug made contact with me in January 2009. Although he was 72 years of age, he visited me on Monday weekly for morning tea. This eventually extended to lunch. If his work took him near my area, he would drop in for a cuppa. We went to the movies occasionally and he went to church with me on Sundays.
Barbara said: I contracted poliomyelitis (polio) when I was 12 years old. This left me paralysed from the waist down. I was unable to walk for the next 2 years and then returned to school.
This has led to these consequences in recent years – rheumatoid arthritis, osteoarthritis, and osteoporosis. In 2010, I had an operation on my left foot to have pins put in 3 of my toes and a plate inserted in the ball of my foot under the big toe. The consequence of this surgery was that I was unable to walk or put my foot on the ground for 8 weeks.
During this time, Doug was a great help to me. He mowed the lawns and the gardens were kept in order. He brought me fruit and took me shopping with a wheelie walker. I was now able to move about inside the house, doing the basics on an office chair.
Movement at the station
In January 2012, after we had been friends for 3 years, keeping company, attending church, going to family function, movies, plays and other things in working together in the houses and gardens, Doug popped the question to me on 3 occasions: Will you marry me? But I was not ready for that kind of commitment.
In March of that year, my arthritis had flared again and I found it difficult to cope with my driveway, terraced gardens, lawns and other things around the house. Doug and I discussed again the prospect of getting together on a permanent basis.
Up to this time Doug was very much of a sound mind.
We thought at first that we could sell Doug’s house and live in mine. We considered Doug’s age, upkeep of my house, and decided to sell both houses and look into moving into a retirement village. This would give us opportunity of making a completely new start for friendship, security, companionship, and confidence for the future.
In May 2012, the decision was made to go ahead. It took us 3 months to clean up one of the houses for sale. This involved a lot of work; we had to scrub walls and clean until our hands bled. To give some idea of what we had to do to clean the house, Doug took 11 heaped trailer loads of goods to the dump. He had been a hoarder, worked on church properties and a large Christian camp facility. He kept everything he thought might come in handy in the future. This clean-up was a mammoth job for a not-so-young couple.
In August and September 2012, we had 2 monster open house garage sales. We did all of the preparation, pricing and presentation ourselves. This was a particularly difficult time for Doug as he had lived and worked in his house for over 50 years. He had built beds, cabinets, made house extensions, and did other things to improve the house.
Doug put his house on the market and it sold in 6 weeks. We had already spent time looking at retirement villages and decided to move to one in an outer, north side Brisbane suburb. Doug moved into this village in October 2012.
1. An incident
There was one situation when we were taking an old oval glass cabinet to his grand-daughter’s place that should have alerted me that something untoward was happening. She lived not far from Doug’s house. It was about 6pm and we had been working all day on sorting and other household things. He became confused about where he was going. I had lived in the area myself for 5 years, so I was aware he was going around in circles. We got back on track and I knew he was tired and worn out, so I put the incident down to stress.
The relationship moves along
We were engaged to be married on Christmas Day 2012. Meanwhile, I had further surgery on my right foot with pins placed in my 3 toes. I was able to walk with a special boot on that foot.
It was time for me to sell my house. We prepared for 2 mammoth garage sales in June and July 2013. Doug and I worked hand in hand, preparing so all would be ready for the sales.
This was a huge task as trailer loads of furniture were transferred to our unit at the retirement village.
We put my house on the market in August 2013 and it was sold in 2 days.
We planned our wedding for 2013, inviting 160 guests. After a lot of work, we were married in September 2013, with my house sale being finalised 2 weeks before the wedding.
In the course of 16 months, we had sold 2 houses, bought a unit, and were married by November 2013.
Now it began: Memory problems
He had a minor stroke in 2000 when Kay became ill, but with no obvious side effects. His speech was slightly affected but it repaired quickly.
The result of this latest head scan showed a shaded area of the brain (the memory area) and it was spreading. After he was tested, he was discharged as having minimal dementia.
Six months later in May 2014, the damaged area was spreading and the deterioration of memory was accelerating.
In August 2014, Doug and I took a 6-week overseas trip. This did not help Doug’s condition as he had periods of disorientation and confusion when he felt lost. This was a difficult time for me.
It was in November 2014 that Doug was diagnosed with dementia because of a cerebral episode (stroke) and no drugs are available for this type of dementia and its effects. The consequences are not only short term memory loss but also memory as a whole.
In February 2015, after a thorough medical examination, it was recorded that Doug was experiencing a marked deterioration since his last testing. He had not only lost 2kg in weight, but he had a very slow response to all cues and physical movement.
Comparison of a normal aged brain (left) and the brain of a person with Alzheimer’s (right) (courtesy Wikipedia)
During 2015, from February to August, the dementia progressed. In August 2015, they took a river cruise which they had booked over 12 months prior. This trip of 13 days was a disaster for both Doug and me. He was so disoriented that did not know where he was or where he was going.
Any kind of change does not help a person with dementia. Change seems to accelerate the disease. Doug has had many changes since 2008. He lost his wife in 2008, sold his house in 2012, bought into a retirement village in 2012, finalised his employment in 2013 and married a second time in 2013.
Some days there seems to be a light at the end of a tunnel or a window will open. But there is no cure for dementia. Everyday the situation progresses to something worse.
Doug does not always know what day it is. He has no comprehension of what he is reading or watching. He is unable to communicate – finds it hard to choose adequate words to express himself. He has difficulty in speaking; he’s unable to name objects and is unable to do simple tasks. He cannot follow instructions or understand what is said.
He forgets some personal hygiene. All clothing items have to be laid out for him. He is unable to shop or handle finances. He does things in reverse, leaves doors open or unlocked; he switches off power points (e.g. for the deep freezer), leaves lights and TV on. He does not know where he and I are going or why or when to get out of the car. Everything has to be written down if I want him to do something.
Wife as carer
As a carer, I find my life is not on. I have to organise and prepare for 2 people. I have to follow up and check out every situation. I have to attend to all necessities in the house. This includes cooking, cleaning and finances. I am on duty all hours of the day and night.
I have no personal, social life or time to enjoy a social outing with a friend. There is no communication or understanding of another’s need from Doug.
With this kind of burden, how does this affect me? I get tired, frustrated and stressed. I need a friend, a hug, someone to talk to, a shoulder to cry on.
The person with dementia is unaware of most situations. They are not affected by their condition.
I spoke with John, another person with a spouse who has dementia, and John said that no-one really understands or realises what spouse carers have to cope with – unless they are in the same situation.
The challenge to Christians and the church
Barbara’s story is tragic in that here we find a lonely, tired and frustrated Christian woman who desperately needs a Christian friend – a female friend – to talk with and cry on her shoulder.
To enable this to happen, we need Christian women to be available and Christian men who will care for the man with dementia while his wife is taking a breather and being engaged socially with others.
Surely this is the time for Christians to put up their hands and put these Scriptures into action:
‘But someone will say, “You have faith; I have deeds.” Show me your faith without deeds, and I will show you my faith by my deeds’ (James 2:18 NIV).
31 “When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. 32 All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. 33 He will put the sheep on his right and the goats on his left.
34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’
37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’
40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me’ (Matthew 25: 31-40 NIV).
‘Faith without works is dead’
Copyright © 2016 Spencer D. Gear. This document last updated at Date: 31 October 2017.