3 February 2017

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.

  1.  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.
  2. To inform about publicly available resources and how to access them to help a carer cope.
  3. 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

Disclaimer

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.

Our story

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

http://www.utas.edu.au/wicking/understanding-dementia

http://www.utas.edu.au/wicking/preventing-dementia

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia

http://www.yourbrainmatters.org.au/about-dementia/what-is-dementia

https://www.caregiver.org/caregiving-101-being-caregiver

Dementia diagnosis

http://www.peninsulahealth.org.au/services/services-a-e/aged-care/centre-home-based-services/cognitive-dementia-and-memory-service/

Alzheimer’s Australia

https://www.fightdementia.org.au/

Mini Mental State Exam

https://www.ihpa.gov.au/sites/g/files/net636/f/publications/smmse-tool-v2.pdf

Carer support

https://www.alfredhealth.org.au/services/carer-services

http://www.alzheimersweekly.com/

http://teepasnow.com/

https://www.facebook.com/Memory-People-126017237474382/

Dementia advocates

http://www.christinebryden.com/christine-now/

https://kateswaffer.com/cv/

Respite Care

https://www.healthdirect.gov.au/respite-care-for-people-with-dementia

http://www.dementiacareaustralia.com/

http://www.myagedcare.gov.au/health-conditions/dementia

http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=6442452967

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Posted in Caring, Dementia, residential aged care, respite care | 1 Comment

It has been nearly a year since my last post and I feel a bit guilty about that. But today is a significant anniversary and I think deserves a special mention here. It is now 3 years since my wife was admitted to an aged care facility and it is perhaps a good time to look back over that time and see what I have learned from this situation.

It is 10 years since I noticed  that my wife was having problems with remembering how to do some of the everyday tasks that we all have to do. She showed an unwillingness to make telephone calls or even answer the phone when it rang. Over a sort period of time this non participation was expanded to not knowing how to operate the remote control for the television, not adding sufficient detergent to the washing machine when doing the laundry, and quite a few other actions which had been routine for her over our many years together. Over the next few years she developed two or three compulsive behaviours such as taking a box of tissues and taking each tissue out one after the other until she had little piles of tissues on the table beside her. Another one was to make little rolls of toilet paper from a large roll and leave them around our home. Somewhere along the way she became quite argumentative and no amount of logical reasoning could make her change her opinion on any particular topic. It was only later that I learned not to argue but to accept what she was saying, and then divert her attention to something else.

As the years passed by she became aware that she couldn’t cope with everyday life in the same way as she used to be able. The first big step was for her to accept that she needed help. That came in the form of an assessment called the MMSE (Mini Mental State Examination) which was conducted in October 2011.

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=121 .

This test confirmed that she had dementia and I was put in contact with various services that could provide help and advice. A year later she had deteriorated to the stage where she need assistance with personal care and dressing. At this point it was necessary to get an assessment for placement in an aged care facility (ACF). This was obtained in September 2012. More services became available to help with her care at this time.

As mentioned  at the beginning of this post it is now 3 years since she first entered an ACF. At that time she was still able to speak, even if the some of the words were made up words, continent, ambulant and able to feed herself. When I visited I would always take her for a walk around the ACF, and we would have afternoon tea together. She is now in the advanced stage of the illness. My wife’s condition is that she is non-verbal, incontinent, immobile and needs assistance with all aspects of daily living. That includes showering, toiletting, dressing and feeding. She spends her days in a princess chair, which is a reclining arm-chair on wheels. Quite often I get no sign of recognition from her when I visit.

https://www.fightdementia.org.au/about-dementia/what-is-dementia/progression-of-dementia

In these days when we read of aged persons in care sometimes being abused by a carer, I must say very clearly that I am very grateful for the standard care provided to her by the staff at her ACF. I am confident that she will continue to receive the same quality care for as long as she has the need.

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10 August 2015

Another six months has passed since my last post. For past readers of this blog (refer post dated 19 February 2015) I ought tell you I am uni dropout. About 9 weeks into the semester I had a medical problem that needed surgery fairly urgently. This seems to be a recurring theme with me over the last 6 years since I retired. It took me a while to get back into my routine after being released from hospital, and to be able to spend any length of time sitting at my computer writing. I had successfully completed the first and second assignments of the subject I had been studying but failed to submit the final one. 

There has been some deterioration in my wife’s condition since my last post. As on the previous occasion when I was hospitalised I did not tell her about it. This time I missed visiting her for 5 days. The day I visited after coming home she smiled when she saw me and then talked about me to me as though I was someone else. This has happened several times now. Lately when I have visited she sometimes asks who am I, before recognition takes place. In early July she had 3 falls in 5 days. Fortunately she did no harm to herself, although in one of the falls she landed on one of the carers in the nursing home. Now she is in a wheelchair for her own safety. This change in her circumstances also means that the staff now have to use a mechanical lifting device to move her from the wheelchair for toileting and showering. It takes 2 staff members to operate the device. She has also become incontinent.

About 3 weeks ago the staff told me that my wife now needs help with feeding. She had been able to feed her quite well with a little assistance. Sometimes the food on the fork didn’t quite make as far as her mouth. Now the fork more often than not has nothing on it at all. In the dementia wing at the nursing home there are 15 residents, 13 of whom need help with feeding. With 3 carers on duty at meal times the maths is easy to do. Carers come from other parts of the nursing home to help, and family members come to assist too. I have now joined that group of people. The words most often spoken during meal times are, “open wide” and “swallow”. Have you ever thought how long it takes to chew and swallow a fork of mashed potatoes? My experience over the last few weeks is about 2 minutes. If you then wonder how to do the same with a piece of tender meat, you might understand why it takes close to 40 minutes to eat a main course at lunchtime. Dessert is a totally different story. This goes down with relative ease in about 10 minutes.

I am currently on holiday in Fiji. This is my very first holiday as a solo traveller and is something that I had many doubts about doing. It is also the first real holiday in about 4 years. I am staying at a resort where, according to my observation of other guests, I am the only person who is there without a friend or family in attendance. A table for one at mealtimes means to me take a good book to read. You can only spend so much time examining the wall decorations, and trying not to watch other diners before you start saying to yourself “I wish they had room service for meals”.  Apart from that I am having a very restful time. The weather could do with being a bit warmer, but the meals are fantastic and I don’ t have to cook them or wash up afterwards. Someone also tidies my room and makes the bed and gives me clean towels every day. I am sleeping better than I have in months, hardly ever waking in the early hours as has been normal for me since my wife went into aged care.

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February 19 2015

It is nearly six months since my last post, and a few things have happened in that time. From October to December I completed the UTAS Understanding Dementia free on-line course. Over 25000 people from around the world were enrolled in the course. I attempted to do the course earlier in the year but dropped out due my own medical problems. That course also had over 25000 people enrolled. The course is set up by the University of Tasmania, Australia. www.utas.edu.au . It runs for 9 weeks and consists of online You Tube videos and interviews. It is divided into 3 units each lasting 3 weeks. The units are  : ‘the brain’, ‘the diseases’ and ‘the person’. I found that I needed to spend 4 to 5 hours a week to complete the course. I recommend this course for anyone who wants to get started on discovering more about this cruel disease, dementia.

After completing the course I received a few emails from UTAS suggesting that I enrol for one of the units in their Batchelor of Dementia Care course, Negotiated Studies in Understanding Dementia. After much contemplation I decided to fill out the enrolment forms and gather all the documents they required. Last Sunday I received an email offer for me study, by distance learning, at the university. As the next semester starts on February 23 I have been very busy looking around the UTAS distance learning website. I have no experience of university culture, so this week a very steep learning curve is being created as I write this.  At this moment it is going like a rocket way above anything I have attempted before. As a newbie to university culture they have a free preliminary course called ‘Unistart’. They say it takes about 30 hours to complete the course and it is good, but not essential, that you complete it before February 23, that is before semester 1 starts. On Tuesday I managed to find my way to the Unistart course on the UTAS website.

I have realised for sometime now that I have a lot of free time on my hands. I retired from work 6 years ago. Since my wife has been a nursing home resident for 18 months now, life has been a lot easier for me. One of my tasks that a needed to do immediately was work out how much time I have free to do the study. After filling in a diary of a typical week I discovered I have in excess of 20 hours per week of free time. I really have more than that but I excluded Friday, Saturday and Sunday nights as “my time”.

So a new journey begins. How long will I last? I have no idea but I will give it my best shot and hopefully complete the unit that they have offered me. After that, who knows what will happen. I might be the oldest uni dropout or get bitten by the study bug and see it through to the end. Watch this space……

 

 

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11 September 2014

Just over 3 weeks ago I moved my wife from the aged care facility she has been residing for the last year. I was offered a room in the dementia wing of the aged care facility in the retirement village where I live. When my wife was assessed as needing residential aged care in October 2012 I asked that her name to added to the waiting list for a room in the facility. I had contemplated what I would do if and when an offer was made to us. She seemed very settled where she was and the nursing care was excellent. Sometimes the PCA care fell short of ideal, mainly due to the amount of work required of the two PCA’s caring for 20 residents , all of who had some measure of dementia. A tour of the new aged care facility quickly helped me to make up my mind to move her. The new home is called The Manor and consists of 4 houses, each with 15 suites. There are still two PCA’s to each house, and therefore they have more time with each resident in their care. The Manor also has a more homely atmosphere with 4 small lounges in addition to the large open plan lounge and dining area in the centre of the building.

IMG_0932          IMG_0936

The retirement village is owned and operated by a not for profit company and more information can be found by following this link: http://www.villagebaxter.com.au

Following on from reading ‘Loving someone Who has Dementia’ by Pauline Ross I have also read ‘Love in the Land of Dementia’ by Deborah Shouse.  This is also subtitled ‘Finding Hope in the Caregivers Journey’. This a record of a daughter’s journey caring for her mother, and experiencing the truth and depth of her father’s love for her mother. I read the e-book version available from Amazon Books.

Currently I am reading ‘While I Still Can’ by Rick Phelps and Joseph Leblanc, again available as an e-book from Amazon. This is the story of Rick Phelps who was diagnosed with younger onset dementia at the age of 57. Rick has also created a Facebook group called ‘Memory People’. This is a support and awareness group for people living with dementia, caregivers, advocates, family members and professionals seeking comfort, understanding, and receiving support and helpful information. To quote from the groups own description on Facebook, ‘We don’t talk about miracle cures or false hopes here. We share about the reality of dementia and memory impairment, and through support and education we find the ability to take another step each day in this journey’.

I hope that some of my readers here might something that helps in their caring/caregiver roles in these books.

 

 

 

Posted in Caring, Dementia, residential aged care | 1 Comment

August 19 2014

I have been reading ‘Loving Someone Who Has Dementia’ by Pauline Ross, PhD. The subtitle is ‘How to Find Hope While Coping With Stress and Grief’. I found the book very helpful in putting into words the emotions I have gone through in my time a carer, and giving pointers on how to cope with the conflicting emotions I experience still, even though my wife has now been in residential aged care for just over 1 year. I read the e-book version available for Kindle from Amazon.

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.

I highly recommend this book to any person who is caring for a loved one whether they are a parent, child or spouse. The views expressed are so close to my own experiences over the time I was my wife’s carer and now that she is in residential aged care.

 

Posted in Caring, Dementia, residential aged care | Tagged , , , | 1 Comment

Bleeding brains – Part 2

When my wife moved into residential care I wrote that I probably would not make any new posts on here. This is mainly because my role as sole caregiver was no longer a valid claim. Since my episode in early January (refer to Bleeding Brains) I have to say how glad I am that she is in good hands at her care home.

After quite a bit of messing waiting for a  hospital outpatients appointment I was referred finally to a neurosurgeon. He required another brain scan, the result of which was that I needed surgery within 4 days to drain a sub dural haematoma which had developed. After 4 days in the hospital neurosurgical ward and 7 days in a rehabilitation hospital I came home. One of the most inconvenient outcomes of this diagnosis is that I am not allowed to drive until the doctor gives me the all clear.

Before the surgery I informed the care home of my situation. I also asked if I should tell my wife what was happening. Because I visit her 4-5 times each week I know that she looks for my arrival. The advice I received was not to say anything to her. The reason for that advice was that if she remembers being told what was going on she would worry about it and become upset.

My wife and I are blessed in that we have a lot of very caring friends. They drew up a roster for visiting my wife, all of whom knew that she didn’t know why I wasn’t visiting.

When I returned home I started visiting again. The first time I visited I explained why I hadn’t been for nearly 2 weeks. At first she couldn’t understand what I was saying. Eventually the fact registered with  her and she became quite emotional. After reassuring her I was alright, even with the restrictions placed on my activities, she became calmer and with a bit of distraction with some chocolate, things got back to being a normal visit.

Now it is 6 weeks since I had surgery, and when I visit her it is only with the help of Ken, the husband of one of the other residents who lives nearby, who picks me up in his car. Each time I visit, when it comes time to leave, I have to explain that I have to go when Ken leaves, because I am not allowed to drive. Some times my wife asks why can’t I drive. Then I have to explain again about having had brain surgery.

One of the reasons I started this blog was to inform other caregivers what being a carer has required of me, and that by relating my experiences here, they might glean something that might be useful in their role. I had no idea of knowing in August last year, when my wife was admitted to the care home, that bleeding brains would take up so much of my time this year. If I had still been her carer in January she would have been relocated into emergency respite care. There is an emergency telephone number to make contact to arrange that care. It can be anywhere the first available bed is located. Similarly that arrangement would have been made while I was in hospital. In my experience people with dementia do not cope very well with change. Knowing my wife as I do after 46 years of marriage, I know that those changes would have been devastating for her well-being and self-esteem. I am so thankful that she is where she is, that she is well cared for and secure. As the care home nurse said to me before I was admitted to hospital, “you take care of yourself, and we will continue to take good care of your wife”.

 

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