Hi Palliverse folk.
In line with our #PALLANZ Tweetchat, this month Palliverse takes a special focus on Carers. As part of this, we are pleased to welcome a new contributor to Palliverse, Glen Davis. Glen lives in regional Victoria. He is husband, advocate, and principal carer for his wife, Carole, now in the final stage of dementia. He also is father to 3 children, and has 5 grandkids.
I was fortunate to connect with Glen when he contacted us to contribute his thoughts to tomorrow’s Tweetchat. For me, Glen’s story powerfully resonates many feelings and realities experienced by carers in our community. He shares with us several resources he’s discovered that have been personally influential. Although Glen believes the palliative care community understands carers better than most medical disciplines, his story highlights the many gaps that exist in the way our carers are supported.
Hope you can learn from Glen’s story and join us tomorrow at #PALLANZ for a candid discussion of how we provide “Care for the Carers”.
Anna (@AnnaLCollins)
BECOMING A CARER
Pictured: Glen with his wife Carole, 2007
Who do you care for and how did you come to be a carer?
I am the principal carer for my wife, Carole. I retired from my work earlier than planned because Carole was needing more help at home. Her symptoms then were anxiety, discontent and some trouble finding her words. Spending more time with her, I soon learned there were some tasks she could no longer do. She had been a crack typist and that had gone. Her sister and brother-in-law (a nurse and a doctor) noticed symptoms they likened to Alzheimer’s disease, so we started investigating intensively. It took over a year before, in 2011, we reached a diagnosis of fronto temporal dementia. That is a degenerative disease in which cognition, speech and eventually mobility decline progressively as a result of shrinking of the brain. It is a fatal disease with no cure.
What does your caring role involve?
At the time of diagnosis, Carole could still drive. She treasured her independence. I took over all night driving, all the navigation, all the cooking, and progressively more of the household chores. For the first couple of years, we managed fine alone. With the progression of Carole’s symptoms, she lost her driving licence. This was traumatic for her as she had always been an accomplished driver and she valued the license as recognition of her competence and worth. Her anxiety heightened and was medicated. She went through a kind of ‘rage stage’ with many events and tears. She lost more language expression and comprehension and developed some obsessions about money and items she feared were lost. Increasingly, I researched communication strategies, medication developments and became her advocate for pension and health entitlements.
What did Carole’s illness and your new role as carer mean for you?
Carole’s disease tipped our whole lives upside down. We had chosen to live in the country because we expected to remain in good health. Now, we were isolated from family, from health services, from respite facilities. Clearly, we were heading for trouble and needed to sell the farm and horses. I had to give up work, cutting short an employment contract in work I treasured. Our superannuation and retirement plans were not mature, so we were going to have to tighten our belts. Initially, I could leave Carole at home alone for a couple of hours if I had farm work, horse care, fencing or maintenance to do. After a couple of years, she needed company and supervision all the time.
How did you feel about becoming a carer?
I felt inadequate. Carole and I were parents to some fine adult citizens, so the tasks of caring were familiar, but it was a daunting prospect to face this tough journey alone. I often remarked that: “I was born without my fair share of the Mother Teresa gene.” I had thoughts of “Why me?” I tried to communicate logically when logic was Carole’s newly acquired principal disability. Initially, I was very alone. My internet research told me that this diagnosis was fatal, but the rate of progression was highly variable and the symptoms each patient exhibits depend on which parts of the brain are first attacked. I could find plenty of information about the pathology but very little about coping and caring strategies. I became a better carer once I made the leap to “Why not me?”
Did you feel prepared to undertake the role?
I was fit and strong and felt able, physically and mentally, to do whatever was necessary, including cope with the unknowns. But I was hopelessly unprepared emotionally and I felt starved for advice. I could not understand how there could be tens of thousands of patients with dementia, but a total dearth of strategies for coping, of advice, and of support.
IMPROVING SUPPORTS FOR CARERS
What supports are missing for caregivers?
There are some truly global issues. The first and biggest is that carers find themselves isolated in many ways. Spouses tend to become sole carers. With dementia, it is the nature of the disease that symptoms are initially intermittent and are apparent only with 24/7 observation and a knowledge of changes and trends. Other family members will often say “she seems fine to me” and turn their backs on a caring involvement. The patient’s behaviours and failing manners make it difficult to dine out and maintain normal social activities. Typically, only a few close friends can understand and hang on.
The law is hard on carers. Wills and powers of attorney need to be put in place before a diagnosis is reached. But nobody advises carers of the timing issues. Following a diagnosis of dementia, the patient’s mental capacity comes under a legal thundercloud. Any will or power of attorney made subsequently may be challenged and potentially overturned on the ground the patient lacked the capacity to make proper decisions. Yet, post diagnosis, if a carer says the patient is incapable of driving safely, the patient’s rights including privacy come first and there are cases in which the patient has been allowed to continue to drive unrestricted. Yes, they are simultaneously unfit to decide bequests for their own assets, but they are allowed to take charge of a lethal weapon on public roads.
There are endless issues with accessing financial supports through Centrelink, leading you to feel the effort costs as much as the benefits are worth. Immediately after I admitted Carole to residential care, I received a letter from Centrelink jerking my chain and cancelling support “as you are no longer a carer”. The decision was fine, but the language was incorrect and very offensive. What they meant is that I was no longer eligible for the carer’s supplement.
Then there are regional issues, as we have encountered living in a rural area. HACC services charge travel expenses at commercial rates, eating into funds allocated for respite relief. Federal resources intended for patient support are siphoned off to the administrative resources of the package provider. We received less than 30% of the funds expended by the Federal Government. This is clearly inconsistent with the federal objectives and resulted from the deliberate diversion of funds by the package provider. My complaint brought apologies but no relief.
There are also issues in the process of coming to access palliative care services. I found it very difficult to find the appropriate resources at this time. Much of the information I was given proved wrong. After a disastrously inappropriate placement with an unsuitable residential facility, I knocked on every door until I learned enough to ask the right questions and find the right people. Eventually Carole was appropriately cared for in residential palliative care in a dementia-specific ward. But I felt I was very poorly served by the people who were supposed to advise and guide me as a carer at that time.
SUPPORTS THAT HAVE BEEN INFLUENTIAL
What resources have you found most helpful in taking on the caring role?
The local Home and Community Care (HACC) services were sincere and supportive, but unprepared for the challenges of dementia. Another carer alerted me (just barely in time) to Aged Care Assessment Team (ACAT) services – I then self-nominated and Carole was assessed as level 4 dependency, eligible for the highest class of support and respite.
At a time of high anxiety, Carole’s helpful GP suggested I search online for a dementia carer support group. That became my ‘forum family’. Nobody knows the issues, the challenges, the whole journey as well as other carers ahead of you on the road. Through that bulletin board, I learned also of the life’s work of my favourite hospice nurse, Barbara Karnes RN, who advises families how to cope with the latter stages of life. Her writings and video “Gone From My Sight” was very helpful and influential for me in understanding the recent death of my mother and the end of life processes of my wife. I also encountered the inspiring diary of a widower – an American called Truette Wayne Frank – who described his grieving, his coping and his legacy.
Our children have been fabulous. When my own health cracked, they left their businesses and full time jobs and travelled to pitch in and help us through the crisis.
What role has palliative care had in supporting you as a carer?
The first role of palliative care I encountered was the education of carers in the processes in the latter stages of life. At that time, I had little first hand experience. I had never participated in the care of someone dying slowly by illness. There was a great deal to learn. I am hugely grateful to US hospice nurse Barbara Karnes RN who has made it her life’s work to educate families as well are care for the patients.
As Carole is now totally mute, doubly incontinent, cannot stand or walk and is struggling to swallow food and drink, she is in residential palliative care in a dementia-specific ward. I continue to feed Carole her lunch, take her outdoors for fresh air and sun and advocate for her needs. When I am not there, Carole’s care is provided by professional palliative care staff.
I have found the palliative care community understands carers better than most medical disciplines. To state the blindingly obvious, the carers know the patients best. The carer has the experience of the patient which allows continuous observation and the discernment of trends. The carer knows what subjects get the patient’s attention, what activities can provide a distraction in times of stress, what foods are preferred when appetite wanes. Carers can provide helpful “patient notes” which palliative care staff can find helpful.
CLOSING THOUGHTS
Is there anything else our community should understand?
A carer like me can take some satisfaction in the work of caring for a vulnerable person. This is not work I sought. I am acutely aware of the losses that Carole and I have suffered to our relationship, our retirement, our wealth and our lives. This is work that came my way and changed my reaction from “why me?” to “why not me?”
I urge other principal carers to try to offer a gift only they can give. It is a gift of participation in the care of the spouse. The time to express love is when it is most needed, when your relative is confused, troubled, with failing communications, wracked by obsessions.
Time will run out for all of us and for our spouses, our friends and our families. Most of us will die slowly of illness or age. We will come, at that time, to reflect and to evaluate. We will judge ourselves. But my approach to the subject is no longer morbid. It is now focused on how best to live the rest of my life.
Pictured: Glen, 2016
Palliverse thanks Glen for generously sharing some of his experiences in caring for Carole. If others in our community wish to contribute, we welcome you to contact us via email (Palliverse@gmail.com) or twitter (@palliverse)
palliverse.com 
Thank you, Glen, for sharing your story. Your comments about the inconsistencies in the law and the difficulties of accessing appropriate services are very insightful. I am glad that you found your GP helpful. I am a GP and I have a large number of patients with dementia. I once read, and I can’t remember where, that dementia follows three stages. The first is around the initial diagnosis, where the legal ramifications come to the fore, as does the question of driving. The second stage is the slow decline, where the patient is often cared for at home, and this is the time to focus on the carer, because this will be a difficult time for the carer. The third stage is the further decline of the patient and the inevitable discussion about placement. This is also a time of high stress and, often, guilt for the carer.
It is always challenging, and can be very difficult, helping managing patients with dementia. I learn most from listening to the patient and their carers. Glen’s story has taught me several things, but most of all, to remember the humanity of the people involved.
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Cloverdoc, I think your style of practice is ideal for dementia patients. There are many different ways of classifying the stages of dementia and I like your observations about the three-stage model you describe. For the carer, a very difficult stage precedes diagnosis. Symptoms often develop for years before being recognised as being something insonsistent with normal aging. There is a more elaborate six stage model described here:
http://ftdsupportforum.com/showthread.php?t=5506
Many patients exhibit features from two or three stages concurrently, because every journey is individual.
The diagnosis of dementia is problematic, time consuming and error-prone. A definitive diagnosis is only possible post mortem. So the testing of symptoms is indirect and unreliable, resulting in many delays and many incorrect diagnoses. The practitioners administering tests are specialists with typically no knowledge of the patient, seeking an insight into behaviours in a clinical setting very unlike their familiar home environment. We were very fortunate that Carole’s symptoms were classic and distinct and were quickly identified by a young neurologist trained in diagnosing dementia. Many other patients are mis-diagnosed, wrongly treated and greatly stressed. Practitioners are aware of the problems and are working quickly and well to improve education, training and diagnostic algorithms:
http://www.bmj.com/content/347/bmj.f4827
http://brain.oxfordjournals.org/content/132/5/1299
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Thank you Glen for this honest and eloquent account of your experience caring for Carole. I find it immensely helpful for my practice (as a doctor training in geriatrics and palliative care, currently working as a geriatrics registrar in a tertiary hospital Delirium Care Unit and Memory Clinic). Every day I meet people with dementia and their carers, at all stages along their trajectory with dementia – from making and communicating the initial diagnosis with dementia, to the final days of life. Fifteen or 30 minutes spent with a carer (especially when a patient is unable to speak for themselves) is such a rich source of information to help with all aspects of care, including making a diagnosis, arranging a discharge home from hospital, knowing how they like their hair washed or knowing their favourite music and food. Sadly, in hospitals we tend to focus more on blood results and scans (often important but sometimes unnecessary if we just spent more time talking to patients and carers).
I am checking out all the resources you’ve recommended here and sharing this blog post with my colleagues – there is so much to learn from patient and carer blogs than we don’t learn from journal articles or Professors. Your blog post has inspired me to arrange for people with dementia and their carers to speak to our registrar group (of future geriatricians) in one of our education sessions – I think that meeting in that forum (where we are not in a “doctor-patient” relationship, rather learning about he realities of living with and caring for dementia) will be very valuable.
Thank you again Glen.
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Elissa, you make an important point that hospital treatment focuses greatly on blood pathology and scans. Much of the published material on dementia describes pathology, scan interpretation and drug treatment. But neither conventional medicine nor alternative medicine has a cure and the drugs that are applied were designed for the treatment of other conditions but applied to dementia in an effort to moderate symptoms.
The Practice Notes issued by Australian health authorities to doctors are outdated. Doctors rely on the Practice Notes for protection in the event they are sued for malpractice. But the Australian Practice Notes continue to recommend for dementia patients medications which are strongly discouraged in World’s Best Practice. Examples are Haldol (haloperidol) and benzodiazepines such as diazepam (valium), strongly discouraged by US national authorities. We found the use of these medicines to be poison with fronto temporal dementia.
Here is the official US Govt NIH latest report:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC181170/
As you note, the major issues with dementia are the management of behaviours, obsessions and anxiety. The most effective techniques are strategies for communication and for moderation. They are little documented and must be individually tailored. I found some of them very difficult to learn.
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Thankyou Glen for sharing your story and experiences as a carer for Carole. I am a rurally-based researcher working in the area of dementia care, and I found your experiences particularly helpful in understanding some of the many challenges faced daily by people with dementia and their carers. We often focus on what goes on in hospital, but the vast majority of people living with dementia are living in their own homes – so its also important that we hear stories like yours about what you have found to work, and where the challenges lie.
I agree with your assessment of the legal contradictions that exist for people post-diagnosis, and the gaps in community based service provision for people with dementia in rural areas. I think its important that these stories are heard, so that we can move towards a response to long-term illness that values the carers as key partners in the journey.
Best wishes and thanks again,
Craig
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Hi Craig,
I tried to make my answers more general, rather than only dementia-specific.
I have a lot more information about the specifics of coping with the behaviours of dementia. If I can help with your research, please email me at glendavis@outlook.com with the title “Dementia Carer”.
Thanks for your work.
Glen
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Hi Glen,
Many thanks for your post about your experience as a carer for Carole. Much of your story resonated with me as until recently I have been supporting my 88 yo father care for my mother who has a diagnosis of Alzheimer’s Disease. Until last week we have been managing at home with the support of an aged care package but we have now placed Olive in a residential aged care facility close to home. They are fantastic but it is early days and it will take some time to assist and support both she and Dad into their new life.
I am an aged/ palliative care nurse with many years experience but negotiating access to appropriate services has been difficult and challenging. The gaps between state and federally funded programs are wide enough for many people for fall through. Often access is only granted due to the diligence and voice of the carer. I worry about the many people are not lucky enough to have a strong advocate. The appalling misuse of taxpayers money by charging exorbitant administration and core advisory skills is an outrage that must be stopped. I am not convinced that client directed care package changes will necessarily address these issues.
The aged care sector staff do an amazing job with the resources they receive but unfortunately decisions about models of care or service provision are made by business heads with minimal input from clinicians, residents and carers. My hope for the future is that as user pays principles are applied to the sector there will be a greater accountability for how taxpayers and residents money is being spent. In addition care along the continuum, regardless of which government is responsible, would see improved access to supportive services and streamlined case management of each individual experience.
Individualised person centred care is certainly the way to go but education of service providers into the management of dementia related symptoms is required to ensure appropriate treatment and management is accessible. There is a fantastic focus of dementia related programs on living well with dementia but very little on dying well. If I was a 52 yo woman dying of a cancer related illness the services and support I could access would be include community based palliative care, specialist palliative care, support services for my carers including counselling, numerous medical personal (generalist and specialist) and a variety of other services. If I am an 82 yo woman dying from Dementia would I have access to the same level of support?.. Would a 52 yo be expected to sell their house to pay for end of life care? At what point did the frail aged or people with a diagnosis of dementia become “less than”? if aged care facilities are becoming the “hospices” of the future, a review of their funding model is urgently required.
My hope for the future is for a strong, vocal and empowered advocacy for our frail aged and people with a diagnosis of dementia.
Sorry to have rambled so but for every person with a voice, there are many who are silent.
I wish you and Carole well
Regards
Jane
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Hi Jane,
Best wishes for your mum’s acceptance of her placement. Also for your Dad’s support and the anticipatory grief of the whole family.
I wrote a book for the commissioner about the extortion of the package provider for Carole’s aged care package. Every complaint was proven and I received apologies, but no remedy for the expenditure I had to make to implement the care plan (which I had to write because the case manager was too busy). Even a strong advocate gets robbed.
I agree that client-directed care packages change nothing. The package providers are a protected species and they prey on overworked, isolated clients and carers. The package providers collude and share a second tier law firm who writes a contract designed to greatly favour the package provider over the client. I succeeded in reducing the client disadvantage, but the table is tilted heavily and most clients lack the knowledge or energy to fight for their rights.
I support your hope for reform. The tinkering we have seen over the last five years has succeeded only in entrenching the waste of taxpayer money and the failure of support for our vulnerable and dependent people.
Thanks Jane for your kind wishes and support.
Glen
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Jane,
Your wrote:
” Would a 52 yo be expected to sell their house to pay for end of life care? At what point did the frail aged or people with a diagnosis of dementia become “less than”? if aged care facilities are becoming the “hospices” of the future, a review of their funding model is urgently required”.
Glen wrote about the inequitable and immoral contract written by a second-tier law firm which tips the balance heavily to enrich the provider.
Together you have nailed the problem of the aged-care home-package system. The contracts are written by the much more powerful providers on a take-it-or-leave it basis. Unsurprisingly the contracts contradict the legislation to rip off the consumer (frail elderly). Those same providers dismiss any family advocate’s complaints as being a transparent attempt to protect their inheritance. Carers don’t have deep enough pockets or the time and energy to sue providers. Just like consumers dealing with any large business don’t.
The problem is easily solved. Legislation needs
1. to introduce a standard-form contract between the consumer (the frail elderly, dementia patient) and the package provider
2. to provide that any term in a contract which contradicts the Act is invalid.
In NSW, the Residential Tenancy Act provides for a standard-form lease and says any changes to it which contradict the Act are invalid.
I greatly admire you and Glen. Let’s hope the Royal Commission solves the structural problems and greed that render the aging and their carers sitting ducks to the unscrupulous.
Cheers,
Catherine
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