from
https://www.theguardian.com/books/2023/may/30/my-father-had-dementia-and-i-was-his-caregiver-heres-what-i-wish-i-had-known

My father had dementia and I was his caregiver. Here’s what I wish I had
known
Cynthia Dearborn
When Cynthia Dearborn became her 75-year-old father’s caregiver, she
knew little about what lay ahead. Two decades on, she shares the
insights that helped her help him

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In 2007, I was suddenly plunged into the role of caregiver for my then
75-year-old father, who had vascular dementia. His short-term memory was
severely impaired, as were his judgment and reasoning skills. At the
outset, I knew very little about dementia and next to nothing about
caregiving, and fumbled my way through one challenge after another. With
experience, I grew more competent and confident.

While everyone’s situation is different, and every individual unique,
here are six insights that helped me help my father.

Keep in mind that many people lack a practical understanding of dementia
My stepmother never could understand, or accept, that there were things
her husband could no longer do. She’d get frustrated and angry with him
for forgetting things and misplacing items. When she fell gravely ill,
her son was upset that my father expressed no sympathy, though my father
lacked the cognitive capacity to grasp that his wife was sick. To my
dismay, this misunderstanding led to a major family rift.

Cynthia Dearborn and her father in Athens, May 1970
Cynthia Dearborn and her father in Athens in 1970

Even health workers can have surprisingly little understanding of
dementia. A geriatric-psych nurse informed me that my father would be
discharged from the hospital back to his house, where his wife could
look after him – when his wife no longer lived there. The nurse had
taken my father’s words at face value, though his version of reality was
unreliable and out of date. For me, this was a turning point: I realised
I had to become not just my father’s caregiver but his care advocate.

Set achievable goals
My father had no awareness that he had dementia and adamantly refused my
attempts to help him. I hired an eldercare manager to help me figure out
a way around this. When I told her I wanted to keep him safe, she said
that was impossible: I could only try to keep him safer. That small
grammatical shift helped me hugely: it changed my task from impossible
to doable. I came to terms with the fact that I couldn’t work miracles,
but I could try to make the conditions of my dad’s daily life less
dangerous, less frightening, more comfortable, more enjoyable.

Communicate kindly
My dad would startle if I came up behind him and started to speak. It
was better to face him and say “Dad!” to get his attention first. No
long speeches, no convoluted questions; I had to speak in small, simple
chunks and give him time to respond. He became very sensitive to my
tone. If I sounded stern, impatient or critical, he became anxious.
Speaking to him calmly helped him stay calm. I tried to give him as much
choice as I could in daily, domestic matters, but choices often
overwhelmed him. So I’d keep it simple: black olives or green? If he
hesitated or began to fret, I’d offer to decide for him, an option he
often took.

Distressed dementia patients don’t belong in hospital wards, but there
are often no other options in Australia
Read more
Distraction can be useful
My father was prone to abrupt mood swings; he could be lighthearted one
moment and morose the next. He tended to ruminate, to get stuck in a
mental groove about one of his habitual worries (like whether his taxes
had been paid). I found that I could sometimes distract and reorient him
if I caught it early, by introducing something amusing or fun that would
catch his attention. “What’s this?” I’d ask, pointing to a nearby
object. Or “How about a poem?” – because reciting poetry was his joy.

You may be shamed or judged for your caregiving choices
A taxi driver who I spoke to about my attempts to get my dad into care
immediately went on a rant, saying, “Old people should be cared for by
family!” I explained that my dad had nobody to help him but me and I
lived overseas. The driver berated me for mistreating my dad. I realised
that strangers would judge me without trying to understand my family
situation. It was infinitely more painful, though, when my own father,
in a state of agitation, told me that I was his only problem.

People from all walks of life need quality dementia care, and caregivers
need support
In seeking out dementia care for my dad, I must have toured a dozen
different care facilities. The variations were striking, and
heartbreaking. How much living space the residents had, how much
privacy, what activities were available, how they were spoken to, how
they were treated. While some underfunded facilities provided excellent
care and some well-funded facilities did not, too often money bought
comfort. Dignity was on offer – for a fee. I witnessed first-hand people
living (and working) in disgraceful conditions. All people living with
dementia deserve quality care. And those involved in caring for someone
with dementia – which currently about 1.5 million people in Australia
are doing – need ongoing support, including respite.

Australian author Cynthia Dearborn’s memoir The Year My Family
Unravelled is out June 2023 through Affirm press

In my case, it was essential to take breaks from my father’s company,
given his endlessly repetitive conversation, as well as the emotional
toll of watching his cognitive decline. Just an hour or two spent on my
own or with a friend could do wonders to refresh my flagging mental
state. In fact, if I had to do it all again, the one thing I would do
differently is take better care of myself. I was so focused on my
father’s care that I badly neglected my own.

Looking after someone whose mind no longer functions as it once did can
be rewarding – my father and I shared plenty of tender moments of
connection. It can also be enormously challenging – practically,
emotionally, financially, legally. Addressing these challenges on a
broader scale will require the political will, and a groundswell of
public support, for the funding of quality dementia research, education,
prevention and care.

Cynthia Dearborn’s memoir The Year My Family Unravelled is out now

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Guardian Pick
If I had access to this article 3 years ago when I was managing a
dementia respite centre, it would be one of the first items I would give
to family members who were lucky enough to access the service.
Of the good advice provided here, the most important to my mind is the
bit about the carers needing a bit of respite from their caregiving duties.
In fact, the centre I worked at was set up decades ago under the "Care
for the carer" paradi…

AwakenstoEmptiness
17 hours ago
Guardian Pick

If I had access to this article 3 years ago when I was managing a
dementia respite centre, it would be one of the first items I would give
to family members who were lucky enough to access the service.
Of the good advice provided here, the most important to my mind is the
bit about the carers needing a bit of respite from their caregiving duties.
In fact, the centre I worked at was set up decades ago under the "Care
for the carer" paradigm that evolved as an economic necessity.
The logic was that it costs an absolute fortune to look after a person
with dementia in a hospital, slightly less in a nursing home and way
less if they are cared for in the family home.
If support systems were put in place to help the carer to manage their
role, then everyone is better off.
I took the time and effort to explain this to the caregivers I met, I
encouraged them to use the time when we were looking after their loved
one in any way that benefitted them.
Some went shopping, some went to the hairdresser or a "Men's shed", some
met up with friends for a cuppa at a cafe. Whatever gave them a break
and helped them survive or even revitalise, allowed them a short bit of
their lives back and keep in touch with normality.
There is something quite sad and almost terrifying when the carer is
isolated with their loved one who is experiencing dementia. I often
worried that they would remain isolated when their caring role ceased.
One other aspect that I inevitably had to raise was to inform them (or
remind them) that dementia is a terminal illness. At the moment, there
is no cure.
It is progressive, although that varies with the person.
In all likelihood, many carers will not be able to fulfil that role at
the end, and that full-time professional care may be needed eventually.
These were some of the hardest conversations I have had in my life and
they did not get any easier.

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HairyButler
HairyButler
AwakenstoEmptiness
16 hours ago
37

An excellent footnote to a great article.

I was stunned to hear there is no minimum standard of dementia training
for aged care workers. I would have thought each nursing home would need
at least one staff member on duty at all times who had some basic
training, but that's not the case.