XPost: soc.support.depression.family

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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Mon 29 May 2023 11.00 EDT
159
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taken my father’s words at face value, though his version of reality was unreliable and out of date.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

------------
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.

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QiMouse
QiMouse
AwakenstoEmptiness
11 hours ago
5

If support systems were put in place to help the carer to manage their
role, then everyone is better off.

A bit of a bugbear with me but as a solitude fan and well organised it
doesn't affect me too much as a carer but I can empathise the
devastation and existential loneliness that many people would face so
well done for effecting something but my bugbear is thus:

A C.i.Fer below wrote about empty sentiment and being avoided thereafter
and thats very true in the main and somewhat understandable as 'human condition' and also from those with 'social/liberal-mindset' which we
take to mean a bit more socially active and supportive.

However, when such sentiments are posturing, larping empty gestures they
not only serve no help but actively 'block' help?

E.g: I can name several charities and endeavours that claim help for
carers (its the same for many other charity endeavours) but actually
they are nothing but advocates, advocating,advocacy staffed by the the
same ineffectual faux-social/liberals that the C.i.Fer referred to. They
not only muddy the waters but actively 'dam the river' by being in the foreground, promoting themselves, given status and funding and yet
producing nothing.

They are the proverbial "Dog in the manger" neither wanting to work and actively inhabiting the space of those who would/could work.

I am angry with them (I'm not generally given to anger). I would rather
such faux-social/liberals either 'take a leak or get off the pot'
because they are defeating an endeavour which is already very fragile,
very difficult and very time consuming. They are actually worse than 'no
help'.

Just my opinion. I might be wrong.

Reply


As my father died, the world never seemed more ordinary – yet I was witnessing a mystery
27 Apr 2023

Bizmo99
18 hours ago
43

It was a very similar situation with my grandmother. When my grandfather developed dementia, she didn't seem capable of understanding the changes
to his behaviour were not his fault and that he didn't do odd things specifically to annoy her. Her getting frustrated and shouting at him
for various things would make him upset and agitated, which only
worsened his behavior. Yet she was very resistant to the idea of him
getting any kind of hospice care, because she saw that as admitting that
she couldn't cope. In the end, my father and uncle told her that hospice
care wasn't so much about giving her a break, but allowing my
grandfather to relax and not feel as though he was in trouble all the
time. In the end, she did agree. But I don't think she ever really
understood the way that dementia impacted him in ways he couldn't control.

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DeborahGeller
DeborahGeller
Bizmo99
10 hours ago
9

This was true of my mother when my father developed dementia. I think it
may be symptomatic for people who are very invested in the status quo?
My mother always wanted to brush problems under the carpet, particularly anything to do with mental health, so I think it may have been an
extension of that. An admission that something is wrong is also an
admission that life has to change, so it's easier to pretend nothing is
wrong? I'm not suggesting that your grandmother fitted this pattern, but
it's just a theory of mine.

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HairyButler
HairyButler
18 hours ago
22

That sounds like very good practical advice, and unfortunately it'll be
useful to more and more people.

As we push further into the COVID+ era, a lot more people will need care
for all kinds of reasons, including dementia. There are many studies
showing a link between COVID and dementia, including an increased chance
of a dementia diagnosis in the aftermath of a COVID infection.

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Ivymantled
Ivymantled
HairyButler
16 hours ago
7

Good point

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SparkTwain
SparkTwain
18 hours ago
45

Caregiving is very hard and exhausting globally. Too many people don't
want to see that we caregivers make a key contribution to keeping health
care systems from collapsing in chaos, which means they and their family members and friends and communities can receive health care if they need
it. We suffer for a world that shuts its eyes to us, and refuses us the
support we need for respite and recovery. Very soon, health care systems
will be unavoidably overstressed by family-caregiving demands, and
people will have to deal with REALITY.

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Bizmo99
Bizmo99
SparkTwain
17 hours ago
50

So true, it's astonishing the amount of judgment that people experience
over caregiving arrangements. My mother works in aged care, and there
are some very compelling reasons why isn't possible for relatives to
simply quit work and move in with an elderly relative to take care of
them. It would mean being unable to pay a mortgage and losing their
home, not being able to support young children, etc. Sometimes, people
have extremely complex needs that require proper nursing facilities,
especially when dementia intersects with other conditions. Sometimes
children aren't even in the same country as their parents, which is
problem when care requirements change suddenly.

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binchicken2023
binchicken2023
Bizmo99
16 hours ago
67

It is also important to remember that not all people are suited to
caring, or want that role forced onto them. There are many family
situations where there has been breakdowns in family relationships long
before any dementia diagnosis.

Way too often it's women that are expected to take on the role of
carers, a role that is seen as worthless by government and society at
large. It's also a role that can take up decades of a carer's life, with
little or no appreciation or acknowledgement.

I often see articles like this one, which are good, but rarely do I see articles about the shattered lives of carers who all to often are
ignored when the person they have cared for dies.

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judyblue
judyblue
Bizmo99
16 hours ago
20

Absolutely true. It's wonderful and admirable when a relative can devote
years to the live-in care of a dementia patient. But many relatives have
other daily obligations and/or live long distances away. Enduring
judgmental comments is difficult. I had to bite my tongue when other
family members picked me as the person who was expected to drop out of
graduate school, quit my part-time job, leave my husband behind, and
move to another state for an unknown period of years to be a live-in
carer for my mother. I know a woman who dropped out of college and moved
back to her hometown to care for her mother. I know another woman who
kept her full-time job and organized a small army of subordinate
care-givers to help her care for her mother who lived in the same city.
I couldn't be either of those women.

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( --- Had I missed page 2 of replies earlier?? ))

Thank you, Cynthia, for such sensible advice which certainly resonates
with me as my sister and I became the primary caregivers for my father
who suffered from vascular dementia. My intention was that he would live
with me, and we tried it for several months, but he was wanderer and
tended to get aggressive - making him vulnerable to attacks. Eventually,
we put him into a dementia ward in a nursing home but visited each day
to check on his car…


Jump to comment

PhoebeZac
15 hours ago
29

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…


Jump to comment

AwakenstoEmptiness
17 hours ago
97

Guardian Pick
Well done Cynthia Dearborn.

After caring for both my parents over the last 10 years as their
conditions progressed, here are some tips:

Start the process of applying for a Home Care Package, Aged Care
Assistance, a nursing home spot, and whatever else you can - as soon as possible. My Mom had great foresight and planning, and got both her and
Dad onto the wait list for Home Care Packages several years before they
were act…


Jump to comment

Ivymantled
15 hours ago
47

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Nickotime
Nickotime
9 hours ago
5

I think there is no harder or unrewarding duty that can be put on the
child of a suffer of dementia than to become their carer . In Britain
people with the illness ( and there are several types of it ) are pretty
much abandoned by state services . A friend of mine who cared for his
wife recieved some materiel help from the NHS but little or no advice on
how to use it to best advantage . She caught CV19 and while she survived
her mental condition deteriorated faster and for 2 years he struggled on
until she died . She was a lovely quietly fun woman and I am sure she
knew what was happening to her . My friend is at least fit ,active and comfortably well off , he was fortunate to have some help from his small
family but he was the main carer. There are no cures for dementia , the
disease only goes in one direction , the carer can only try to slow its progress. I help look after my Mum , with my sister and some private
help. She lives alone and wants to die there , she has ( i think ) the
still early stages of dementia . Her GP's are great when she gets a
physical illnesses but her mental state is never addressed , it is
ignored. The writer was a heroine , she was the main carer , I find even
2 days a week ( more when my sibling goes on holiday ) onerous and
emotionally draining .

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Dreyfuss
Dreyfuss
9 hours ago
9

Wonderful piece.

As an only son, this resonated exactly with my own experience caring (or
mostly trying to organise care and negotiate her care) for my mother
with vascular dementia.

It lasted 4 years before she died, but absolutely and completely broke
me in the end. The pressure to get it right, wade through the system,
while dealing with a failing person, with surprising callousness and
judgement from all around (particularly early on) is brutal. A good (surprisingly cheap, but caring) care home in the end, was
extraordinarily helpful. But she only got that for the last 6 months.

My emphasis - try as best you can, to protect yourself. It's a severe
mental impact to you as well; not dissimilar to a life changing injury.

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tunneller
tunneller
9 hours ago
3

I ran an EMI unit in the 90s for a year. My lovely patients would be
assessed, with as much background taken at the time as possible. My
approach was that of including families as far as humanly possible, from
day one, giving them as much time as poss, to talk and giving them the
pamphlet i produced in the hope it elicited questions.
My view was that these families were entrusting to me the most precious
people. In the main it was true. Some were fairly indifferent, not
wishing to be engaged on any level but still experiencing grief, so
sensitivity was an absolute necessity at all times.
So many people are caught off-guard by this horrendous disease, not
knowing what to expect and how the disease will progress. Education was
- and more now - essential.
Drawing carers in from the surrounding areas, using one of the lounges
as a weekly meeting point, helped reduce the isolation felt by many
(ironically i am now ft carer to 3 kids with a genetic disorder, so ive
been both sides of the fence) and established small support networks
within localities.
When my wonderful dad developed dementia following repeated TIAs it hit
my mum like a train. She had had no experience, no knowledge and she too
got annoyed, at times yelling at him.
Not every person who ends up as a carer, is equipped either mentally or physically. When he began having seizures as a result of his brain
damage, she could no longer cope. Two homes later, he died and mum's
guilt and grief drove her to attempt suicide repeatedly.
Part of the education of carers absolutely should deal with guilt. It is
such a massive part of this dreadful situation.
Of course, 13 years of austerity has left so many people with little
choice but to care at home with all the associated highs and lows and
they are a voiceless hidden army saving states billions every year. It
is beyond shameful that so many are thrust blindly into this.

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AdvancedDriver
AdvancedDriver
9 hours ago
3

My mother-in-law had Frontotemporal dementia (FTD). She was very good at
hiding it initially and her family were also in denial about it. The
occasional major incidents caused by her irrational behaviour and
failing short-term memory provoked anger, disappointment and hurt as if
they had been done by a naïve teenager.

She had always loved Sudoku puzzles and would sit every afternoon for an
hour or two working her way through a thick A4 book of them. "Look," the
family would say to me, pointing to the well thumbed book. "There's
nothing wrong with her mind. She can solve tough Sudokus."

It was only when I checked her recently completed answers that I found
that all of them were wrong.

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perkins51
perkins51
9 hours ago
5

If someone is living alone and they are diagnosed with dementia then
they no longer have to pay council tax. I know this doesn't help with
the agony of seeing someone suffer the effects of this horrible
condition but it will help financially.

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securityferret
securityferret
perkins51
8 hours ago
2

This is a very good point and we only found this out recently when my
mum was diagnosed.

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perkins51
perkins51
securityferret
6 hours ago
3

Yes it's not well known. We found out a long time after my mum was
diagnosed and contacted the council. We had to send a doctors letter
confirming the date of the diagnosis and then we received the council
tax back that she had paid from that date forwards.

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eudyptula
eudyptula
10 hours ago
2

Excellent article. Not only are a lot of people surprisingly
ill-informed, but my experience (about 15 years ago and in Australia)
was that the multiplicity and uncoordinatedness of government programs
and funding can be mind boggling. I was lucky to find a couple of people
in the "industry' who could help me navigate the system.

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Nasporran
Nasporran
10 hours ago
4

Thank you for publishing this article, all of that is familiar from my
time caring for my late partner. Can I add a note promoting the
Alzheimer's Society and their online peer support service Dementia
Talking Point, as that was a lifeline.

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Babbage51
Babbage51
10 hours ago
10

A very useful and important article.
Something worth mentioning is how to deal with confabulation, in which
the person with dementia invents scenarios to fill in the gaps in their
failing memory or impaired sensory awareness. As a GP I found that this
caused tremendous frustration for carers until they understood the problem.
For example, one patient's dementia included partial cortical blindness,
caused by degeneration of the visual cortex on one side of his brain.
(It's not uncommon; when asked to draw a clockface they cram the numbers
into one side of the dial). He needed help to turn left, e.g. to a door
or a path, because he not only couldn't see to the left, he couldn't
appreciate or understand that it was there. He often commented that
their dog was missing a leg (it wasn't), and insisted that Margaret
Thatcher was PM years after she left office. This drove his wife
bonkers; she was constantly correcting him, and this would make him very
angry because she was challenging something he sincerely believed.
It's better to go along with the misperception; perhaps gently correct
it once, not saying "don't be silly", in case it's a simple mistake;
but, if it persists, don't press the point, but gently go along with it, without necessarily reinforcing it.
It helps to explain this to others when needed, to avoid the kind of
rift mentioned in the article.

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GoldenZen
GoldenZen
Babbage51
9 hours ago
6

This is true to my experience with my mother who can't remember anything
much about my father who died a year ago. She has created a narrative
that suits her and I very quickly decided there was no point at all in
trying to correct her. One aspect of her story about him is how he died.
In her mind he was sitting on the sofa next to her one minute, said he
was tired and went for a lie down in the bedroom, and the next minute he
was dead. This is very far from what actually happened but is obviously
a much more comforting way of remembering it for her. Nothing would be
gained by me trying to disabuse her of the idea so I just let it go.
It's quite interesting though from a medical point of view to consider
that while she can't remember actual facts about past events she has
absolutely consistent recall of her invented accounts which never vary
in their detail.
I think also that this kind of behaviour can feel something like an
assault on your own state of mind because you know the truth (as far as
anyone can) and someone whose intellect and judgment you formerly
respected and relied on is insisting that something is true when you
know it isn't. In that sense battling with these kinds of dissonances is frankly more about oneself than them since to them it can't and doesn't
matter. One realised that, without caring any less, one simply has to
let the person you once knew go. It's an enormous release to be able to
do that.

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bigwhitebird
bigwhitebird
GoldenZen
5 hours ago
1

I think also that this kind of behaviour can feel something like an
assault on your own state of mind because you know the truth (as far as
anyone can) and someone whose intellect and judgment you formerly
respected and relied on is insisting that something is true when you
know it isn't.


I understand what you mean - even though you know the other person is
not trying to hurt you, it still feels like being gaslighted.
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flinders
flinders
10 hours ago
4

Current research is showing that people who had Epstein Barr Syndrome,
and carrying resultant antibodies are showing the decay (dark areas) in
the brain stem and brain that could be related to memory diseases.

This antibody attacks those cells and the theory is that they are
activated in older age and could be a direct cause of these dreadful
diseases.

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Spyke2013
Spyke2013
flinders
8 hours ago
2

I am thinking I wish I hadn't read your comment knowing I am carrying
those antibodies. A case of ignorance is bliss for sure! Seriously
though, it would be great if future research could find preventative measures.....I'd be volunteering myself for research if I lived anywhere
the university/hospital involved as dementia seems to be an
exponentially growing blight on so many lives.

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flinders
flinders
Spyke2013
8 hours ago
1

There is a Graun article, printed last week I think.

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Sithrak
Sithrak
10 hours ago
4

A few weeks after the diagnosis, we planted monk's hood in the garden,
the purple flowers brought joy and then release, served in a gin and tonic.

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Spyke2013
Spyke2013
Sithrak
8 hours ago
1

Interesting.....

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Anne_Williams
Anne_Williams
10 hours ago
10

I really admire this lady for her dedication, I would have liked to have
looked after my parents but I suffer with ME, as it was they received
amazing care in a nursing home. Two points that struck me were, first, judgement. When my parents still lived at home they had carers provided
by social services although they were self funding. They used to
complain about me, for example, I read one note by the carers saying "
Anne was always complaining about feeling tired and going home saying
she couldn't cope". They didn't believe in ME and thought I should be
doing their work, but for free. Another point I would like to mention is
that people with dementia can still recall on an emotional level what
they can't actually comprehend in what we see as " normal" responses.
For example, I read my mother a poem by Shelley, who used to be one of
her favourite poets. When I got to one of the sad stanzas I had to stop,
my mother started to cry. Also, when my father died in the nursing home
one of my sisters told my mother that he'd died. I didn't think it was a
good idea to tell her, she didn't even recognise my father. But after my
sister told my mother, she cried for weeks, saying she felt really sad
but couldn't remember why. Vascular dementia is a cruel disease.

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bobble4293
bobble4293
Anne_Williams
7 hours ago
3


Also, when my father died in the nursing home one of my sisters told my
mother that he'd died. I didn't think it was a good idea to tell her,

Mother in law, with dementia, kept asking, for weeks, perhaps months,
where father in law was, despite having found him dead, at home,
herself, and having attended his funeral, and being in possession of a
casket containing his ashes...

Anyone who has a relative with dementia, who has been predeceased by a
spouse, and is in possession of that spouse's ashes ought to ensure the undertaker provides those ashes in a secure container...

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bigwhitebird
bigwhitebird
Anne_Williams
5 hours ago
2

When my parents still lived at home they had carers provided by social
services although they were self funding. They used to complain about
me, for example, I read one note by the carers saying " Anne was always complaining about feeling tired and going home saying she couldn't
cope". They didn't believe in ME and thought I should be doing their
work, but for free.


I'm so sorry they did that to you. It's bad enough when casual strangers
pass judgement, like the taxi driver in the article, but when
professionals show such a lack of empathy it is massively demoralizing.
They should have been working to support you, not working against you.
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Anne_Williams
Anne_Williams
bigwhitebird
4 hours ago
0

Thank you !

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latestvictim
latestvictim
10 hours ago
11

Could some one do a similar article for caring for newly diagnosed bi polar? This is an excellent article and could be the start of a helpful series
‘ what I wished I had known’ from experienced carers.

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Stechriswillgil
Stechriswillgil
10 hours ago
7


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