In December I was invited to speak at a Men’s Shed near where I live. For information about Australian Men’s Shed organisation go to http://www.mensheds.org.au/ The one I was invited to address is part of New Peninsula Baptist Church, based on the Mornington Peninsula, Victoria. https://newpeninsula.com.au/men/. The object of the talk was threefold.
- To inform the shed members, all of whom are retired, about what it is like living with and being the carer of someone who has dementia.
- To inform about publicly available resources and how to access them to help a carer cope.
- Lessons I have learned in my role as the carer of someone who has dementia.
Some of this information will relate specifically to people who reside in my local area. If a reader is from interstate or in another country that information will not have the same relevance.
The following paragraphs are the text of the talk and is presented with some small but necessary additions.
Dementia Story – December 2016
I am not a doctor, have had no training in any field of medicine. I am only speaking about my experiences as a carer of my wife who was diagnosed with dementia in 2011. I will be supplementing that with information freely available on the internet.
What is dementia?
Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person’s functioning. It is caused by chemical changes and structural changes in the brain.
It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning.
There are over a hundred types of dementia including Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy Body disease.
A definition of dementia goes like this:
It is a progressive, incurable, fatal disease of the brain. It is unpredictable in its progress, every case follows its own path. It is uncommon for people under the age of 65 to develop the illness. But there are some people who get in their 40’s and 50’s. 2 examples of this are as follows:-
A young mother who started with the illness in her 30’s and died within 2 years. At the other end of the scale a case of younger onset dementia began in her 40’s and is still with us 20 years later.
Statistics about dementia
In 2002 there were an estimated 162,000 people in Australia aged 65 and over who had dementia.
In February 2016 356,800 people have dementia in Australia.
This number is expected to increase to 400,000 in less than five years
3 in 10 people over 85 years old and 1 in 10 over 65 have dementia
Worldwide, there are more than 46.8 million people with dementia today
1.2 million people in Australia are involved in the care of people with dementia
Dementia is the second leading cause of death in Australia
On average symptoms of dementia are noticed by families three years before a firm diagnosis is made.
I first noticed a change in Ann’s behaviour in 2006 on a visit to family and friends in England. She showed an unnatural apathy to planning our days, and not normal interaction with friends and family when visiting them. E.g., not joining in the flow of conversation, or being able to cope with too many people at the same time.
At this stage Ann recognised that not everything was as it should be or as it had been in all the years previously. We went to see our GP and he brushed it off as just senior moments and not to worry too much about it.
I was still working full-time and Ann enjoyed being at home looking after all the domestic chores, and organising our social life, volunteering one day a week here at the church, attending church each week. She was physically active every day, often walking 6 or 7 km or more each day. I preferred to start my working day early, so she would get up with me at 5.30 am, prepared breakfast, and my lunch so I could be in the office in the city and working before 7.30 am. For most of the last 3 years before I retired I worked from home and that was when I really noticed that she wasn’t functioning as well as I thought she was. Initially it was things like clean shirts in the wardrobe perfectly ironed apart from being ironed inside out. Then occasionally I would notice that she was wearing a tee-shirt inside out or back to front, or a jacket inside out.
I retired in 2009 and we sold our home for that past 35 years and moved into The Village Baxter. That was all pre-planned, we had put our names down for a unit there 5 years beforehand. Ann showed no interest in preparing for the move, she just continued with her regular routine, a routine that was familiar and she could cope with.
On the day of the move she took no active part in unpacking and setting everything in its place. Around that time it started to become more obvious to close friends that Ann had a problem. 4 months after we moved I had a serious medical problem that required urgent surgery. Those close friends stepped into the breach while I was in hospital in the city and brought Ann to visit me every day and then took her to their homes for dinner. I made a good recovery and was home again in a week, but I wasn’t allowed to drive until the surgeon gave me permission 8 weeks after the surgery.
By 2010 I was fit again but Ann was having more problems. I was able to manage at this stage and we shared all the domestic chores. We took a 6 week winter holiday to the Gold Coast with our caravan. Out of her usual routine things got a bit too much for Ann. She couldn’t find her way to and from the shower block. She couldn’t remember the code number to access the shower block. Unfortunately the shower block had two access doors and sometimes she wouldn’t come out the way she went in, and that caused more confusion. Other changes were not wanting to answer the telephone when it rang, or not knowing how to operate the remote control for the television. Washing dishes in cold water, doing the laundry with barely a teaspoon of detergent.
Anyway we stumbled through the rest of the year and into 2011. During this year New Pen Pastoral Care started providing some respite for me. One day a week someone would come and take Ann out for the day. This gave me opportunity to do the shopping without losing Ann in the supermarket. In October I managed to get Ann to acknowledge that she had a real problem and we ought to get some medical advice. This time the doctor didn’t put us off but referred us to Cognitive, Dementia and Memory Service at Peninsula Health. (CDAMS)
CDAMS sent out a couple of their people and they conducted the Standardised Mini Mental State Examination. The maximum score with for that test is 30. If you have no cognitive decline you would score in the high 20s or even 30. Ann scored only 12. A couple of weeks later she had a consultation with a geriatrician and did the same test again and only scored 10. While she did the test I was interviewed by a social worker. The doctor’s diagnosis was Primary Progressive Aphasia, which is a variation of Frontotemporal Dementia.
Symptoms of PPA, having difficulty forming words, being hesitant and halting in speech, making errors in speech sounds, having difficulty understanding sentences. These symptoms made it difficult to reason with her. She not only couldn’t comprehend what was being said, she couldn’t express in a coherent way what she wanted to say. If she said something that I knew to be completely wrong and tried to correct her that made the situation much worse.
The only therapy they suggested was consultations with a speech pathologist, which we did for 10 one hour sessions over 10 weeks. After all that there was no improvement so we ended the therapy.
So into 2012, symptoms are getting worse, mainly in the area of behavioural changes. For example ability to handle money, being argumentative or irritable, difficulty dressing and undressing, unable to complete household tasks, going out and getting lost. Alzheimer’s Australia have a list of 26 typical behavioural changes which can be caused by dementia.
There was one incident later in the year which was a major turning point for Ann. Because she would often not sleep very well and would get out of bed and go to the bathroom, we always left a light on in the bathroom and a very low-wattage lamp on her side of the bed. One morning she got out of bed and then just stood still. Then she said, I don’t know where to go or what to do, and started to become distressed about it. So I also got out of bed and led her to the bathroom and sat her on the toilet. When she came back to bed we had a little chat about that, and she agreed that we needed more help. Questions from me like, what if I hadn’t been here to help, what would you have done.
That led us to another visit from the people at Peninsula Health, this time from the aged care assessment people. They assessed her as being eligible for high care in a residential aged care facility. Her case was also referred to the carer services branch of Alfred Health. I contacted the Village Manor, the high care facility at The Village Baxter and had her name added to the waiting list. I was contacted by the carer services, interviewed by Ann’s case manager, and some support services were put in place. Services such as showering 3 days a week, attendance at respite care centres 3 days a week, and occasional weekend respite care to give me time to rest and relax. Carer services provided counselling, and educational courses for full-time carers, all which were encouraging for me. Alzheimer’s Australia ran a family carer course one day a week for 3 weeks which provided lots of useful information.
We are now into 2013 and Ann is becoming more difficult to manage. By July I was wanting to arrange 2 weeks of respite care so I could have a break. Ann was still on the waiting list at the Village Manor. I rang Baptcare who had recently taken over a privately run nursing home in Frankston South. They said they had respite care available, but they also had 2 vacant rooms and if I was interested come and have a chat. Ann was moved to that nursing home at the beginning of August 2013.
Making that decision was the hardest thing I have ever done. After the move I was emotionally, physically and mentally drained. I had conflicting emotions of guilt for not being able to continue as her carer but also relief because the burden of daily care had been transferred to someone else. With that came the realisation that I would now be living alone probably for the rest of my life.
When someone is admitted to a nursing home they advise you not to visit for few days to give them time to settle in. On my very first visit I could see that Ann wasn’t at all happy. She said, ‘what’s this about me having dementia and why am I here’. So I had to explain again just like I had before she moved there that I was unable to continue caring for her because it was affecting my health. I said that if I had become ill and unable to care for her she would have had to be placed somewhere for her care.
When she moved into care, she was ambulant, continent, but needed assistance with toileting, needed assistance with showering and dressing. She could feed herself and still able to speak but sometimes it was all mixed up and hard to work out what she wanted to say.
Now 3 years later she is non-verbal, immobile, mostly unresponsive and incontinent, has to be fed all food and drink, needs to be showered and dressed and undressed. She spends her days in a reclining arm-chair on wheels, her nights in bed with a fall mat alongside the bed. She has to be turned in the chair and in bed every 2 hours to prevent pressure wounds occurring.
That is a brief retelling of my story for the last 10 years. I have obviously left out a lot of details about some of the times we had together during that time. I think you will have got the idea that being a full-time carer, which is a job I wasn’t trained for and didn’t want, is a difficult place to be. Without the help of friends, family and available support services during that time, and still continuing until the illness takes Ann from me, I doubt if I would have made it through to be here to tell the story.
Lessons to be learned
Lesson 1 – find out as much as you can about the illness you are dealing with. An excellent source of knowledge is a free online course from the Uni of Tasmania titled Understanding Dementia. They run that course usually twice a year, it takes about 4 hours per week over 9 weeks. When you complete it you get a certificate. Another very good source is the Alzheimer’s Australia website.
Lesson 2 – if you or your family member think they may be having memory problems, do something about it as early as you can. Do not delay because in the early stages there are medications that can help some people. If it turns out that you don’t have a problem that is a blessed assurance. Just be certain that there is a big difference between a senior’s moment, depression, mild cognitive impairment and the early stages of dementia. Too many people have been diagnosed with depression and treated for that when they actually had dementia. First contact is the Cognitive, Dementia and Memory Service of Peninsula Health. You don’t need a doctor’s referral, you can just call them on the phone and have a chat. There are no costs involved for assessments made by CDAMS.
Lesson 3 – It is important at this stage to ensure that the person with dementia has in place Enduring Powers of Attorney both Financial and Medical. This needs to be done before dementia takes away the person’s ability to understand what they are signing and why. If you miss this opportunity at this stage you will need to apply to the Victorian Civil & Administrative Tribunal (VCAT) to be appointed the Administrator of the person’s affairs.
Lesson 4 – Being someone’s carer is a full-time job. And I mean full-time, 24 hours a day, 7 days a week. If you have a case of dementia confirmed make sure you get all the help you can from the available resources. You cannot do the job effectively without that help. If that means someone to shower and dress your patient, or someone to clean your home, these services can be obtained from your local council, at very little cost, and any number of other organisations such as the Village Baxter Homecare Services.
If you are receiving the aged pension apply for the carers allowance to be added to your pension. Currently that is $123.50 per fortnight. It won’t make you rich but it will go towards paying for the expenses of day care centres for 3 days a week, and giving you time for yourself. Day care centres operate usually from 10.00 am till 2.30 pm. They provide activities appropriate for the client’s needs and a 3 course lunch for about $20 a day.
Lesson 5 – join a support group. These are organised by support services like the Brotherhood of St Lawrence usually on a monthly basis. Alzheimer’s Australia have Memory Lane Café’s all over Victoria. These are funded by the Australian and Victorian Governments. These cafés provide an opportunity for people with dementia and their family members to enjoy time together with some refreshments and entertainment, in the company of people in a similar situation to themselves. Alzheimer’s Australia Vic counselling staff and trained volunteers also attend.
Lesson 6 – Learn new skills like cooking, doing the laundry and ironing. I know men who when they were widowed had no idea how to cook anything. Basic cooking skills are an essential for any man, whether single or not. Confession time, I had never ironed a shirt or anything else until 5 years ago.
Lesson 7 – organise regular respite care for your family member. Currently carers are entitled to 63 days of respite care per year. That is nine weeks every year. It costs the current basic daily care fee which is less than $50 per day.
Lesson 8 – never argue with a person with dementia. Never ask them if they remember doing something last week, because it is the short-term memory that goes first. An argument with a person with dementia will only cause frustration for both people. Not only that, it will cause loss of trust by the person with dementia in the carer. A person with early stage dementia knows there is something wrong, and often has low self-esteem as a result. Trying to win an argument with them only makes the matter of self-esteem worse, and that then makes caring even more difficult that it was before.
Lesson 9 – Realise that dementia is a progressive as well as fatal illness. What was normal today may not be normal next week. It is the disease that is changing the person, they are not doing unusual things on purpose. Frustration and anger is probably a natural response to the changes the disease is producing. This leads to feelings of guilt on the carer’s part, even more loss of self-esteem on the part of the person with dementia. Every carer becomes frustrated or angry at some point in caring for someone with dementia. That is probably one of the causes of the high rate of guilt feelings among carers. It is important to keep in mind that you are doing the very best you can, that most of the time the carer is doing a good job.
A couple of years ago I read a book titled ‘Loving Someone Who Has Dementia’ by Pauline Ross, PhD. The subtitle is ‘How to Find Hope While Coping With Stress and Grief’. The basic premise of the book is that dementia creates ambiguous loss. Ambiguous loss is defined as loss that is unclear, it has no resolution, no closure. Dementia causes our loved one to become someone we no longer know, they are gone – but still there. This leads to complicated grief. By the time the loved one passes away, very often the carer has grieved several times over at each and every further loss of ability, as the loved one progresses through the various changes caused by the disease. When death finally comes there is no grief left to grieve with.
Lesson 10 – Accept new behaviours and loss of social skills. One of the hardest things to adapt to is that the disease takes away a person’s social graces. A person with dementia will do things they have never done before. Actions that can be very embarrassing to themselves and their carer. That is hard to watch.
Lesson 11 – Keep good friends close to you. Some friends will fade from your radar when they learn of your situation. Either they can’t cope with visiting and observing the changes that have and are taking place. Or perhaps they think it might be contagious. Unfortunately there a stigma attached to dementia. Three out of four people with a mental illness report that they have experienced stigma. Stigma is a mark of disgrace that sets a person apart.
As Ann’s carer I never experienced any stigmatisation. Almost all of our friends are still our friends. At this point it is appropriate that I pay tribute to the many friends who have been supportive of both Ann and I during the last few years since her illness became apparent. Friends who have gone out of their way to provide transport for me when I was medically unfit to drive. Friends who have visited Ann during my absence on short breaks or in hospital. Friends who have invited me over for meals. Friends who pray regularly for both Ann and I. You may not know it but you helped me through some pretty dark days when Ann first entered the nursing home.
Lesson 12 – Perhaps the most important lesson is that caring for any person with an incurable disease, whether that is dementia, MS, Parkinson’s disease, is all about love. If we can put aside some of the frustration, guilt and anger, and the love is still there, then the reward of caring for them can come to the forefront.
Lesson 13 – when the going gets too tough and it starts affecting your own health to the point that it is a matter of real concern, give in, and place your family member in preferably a nursing home which is run by a not for profit organisation. There are two options available regarding aged care. The first is private care where you pay the market rate at the facility you choose. The second option is Funded Community Care where the government set the fees. To make any placement in a Funded Community Care facility you will need an Aged Care Assessment from CDAMS and you will be required to fill a Centrelink Combined Income and Assets Assessment form. That form has 145 questions. The rules for all this changed this year and are very complicated and you will need to talk to Centrelink and the nursing home for all the details.
Helpful Web Sites for Carers of People with Dementia
Mini Mental State Exam