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”.
BECOMING A CARER
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.
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.
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)