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Huge changes take place in tiny increments. Looking back now, it is
blatantly obvious that my mother has dementia and yet it has taken years
to put together a long string of quirky and bizarre events or episodes.
Perhaps it's because these things happened inconsistently and as stand
alone events they were explained away. Maybe by comparing my own lack
of focus and occasional forgetfulness, I accepted it as normal. My mother
is eighty four years old, so it's fair to accept that her mind, like her body,
is not functioning as well as a younger person. It is normal for an older
person to be forgetful and a bit flustered from time to time, isn't it?
What is normal anyway? My mother's normal was always a little quirky.
Even as a younger woman or when she spoke about her childhood, she
would mention having visions or premonitions. To us, this was normal for
mum. She was religious and saw angels, that's a good thing isn't it? We
thought she was psychic and that is pretty cool, right?
My mother was always a day dreamer. We would often startle her out of
deep thought. I ask myself now, was it really deep thought or
thoughtlessness? We used to laugh and tease her about living a short
distance outside of her body or refer to it as her happy place.
My father was a gregarious man and entertained people with ease, charm
and wit. Over the years, mum kind of disappeared in social situations and
retreated into herself. I assumed this was shyness or perhaps just giving
up competing with him for attention. Thinking back on that now, I wonder if
her mind was just not fast enough to process the white noise of robust
conversation and humour.
When she mentioned things things like: Jesus Christ standing in her
kitchen, fairies dancing on the lawn, strange sounds in the night or people
on television looking at her, we really didn't feel too concerned.
She misplaced things often, forgot she had rung earlier and rang two or
three times a day; bought too many unneeded items at the supermarket
or not enough of the things she she did need; took to wearing the same
clothes for an entire week or more; started wrapping things in paper or
putting things in plastic bags and generally hiding things.
None of those things set off alarm bells. It was when she started calling
the police and telling them that she had been robbed; accused the
neighbour of playing with strange electronics all night; stared sleeping
with a bag tied to her wrist with her important possessions; hoarding piles
of newspapers, junk mail and magazines; not smelling the gas leaking
when the flame had blow out; forgetting how to use appliances; being
conned into giving away money to door to door salesmen or even people
in the street; losing her way home from only a block away... But what
snapped us into the confronting reality of dementia was when she
became so inconsolably distressed about people coming through her
walls and ceiling and moving or stealing of her stuff. She was frantic and
ultimately hysterical about the relentless invasions and theft of all her
My sister and I had talked for a long time about the inevitable...But, we
needed to try everything else first: we sold her home and moved her into
a secured seniors villa; employed home-help to assist with cleaning and
shopping; arranged meals to be delivered and a microwave to cook rather
than use the gas stove; consulted a psychiatrist to assess her and start
her on medication, which decreased the anxiety and improved her focus;
we called her daily and visited her or took her out regularly. For a years
or more things became manageable – just.
Fortunately we had also put things in place and did a little research in
preparation. We had half-heartedly looked into aged care facilities, costs,
grants and availability. We had mum give us power of attorney, before
she had a diagnosis, which was essential as once a person is diagnosed
as legally incompetent, then things can end up with a public trustee and
that makes things really complicated financially and practically. Finally we
had her assessed by the aged care assessment team (ACAT) at the
public hospital, and for a year or two they monitored her and prescribed
medication which held things in a reasonable, stable state for a year or
so. She was loosely diagnosed with lewy body disease which is a common
form of dementia.
I guess for us, the confusing thing about it all is that she was, and still is,
actually quite lucid most of the time. Our understanding, and that of many
people, is that dementia patients are gaga; that they can't remember
anything and according to 'movies', they appear to walk around like
zombies or hallucinate like LSD trippers.
The closest I can describe her at the moment is that she is very similar to
a 5 year old child. Too smart to trick but not mature enough to make good
judgements. She might forget to eat or only eat sweets, doesn't know the
date or how to read time, might not remember she has asked the same
question six times within the same hour, could walk across the road
without checking for traffic, she may become disoriented moving from one
room to another...But no, she has not forgotten who her family is, who she
is, where she has lived or how to dress herself. She can give a logical
argument, although an immature one. She has lost some of her memory,
much of her focus and concentration and a good deal of emotional
If she was incapable of knowing what was going on around her, it would,
in many ways, be easier to deal with; we could take control, but the
biggest and most heart-breaking part of it is that she is aware, does have
opinions, gets frustrated and upset, and she can't understand why we are
bullying her, anymore than we can understand why we feel we are
I despise that cliche, 'cruel to be kind.'
In the end, she became hysterical about people being in her house
stealing her things or watching her. She had worked out rationally that
they could not possibly have broken into the house as everything was
locked and double locked, so she settled on believing that they were evil
spirits coming through the wall at night. She was so distressed that she
had called the police, who called me and by the time I had rung her, she
was inconsolable, threatening to kill herself and just sobbed and sobbed
that she could not live like this. Luckily my sister lived closer and was able
to get to her shortly after.
The day we had dreaded had arrived, she was not safe, could do herself
harm and she/we needed more help. Dementia is a family disease, we all
suffer from it. It causes depression, anxiety, guilt, shame, frustration,
anger, resentment, confusion and sick to the heart sadness for all of the
family. Dementia is also grief; slowly it dawns on you, that you are
watching your parent drift away, dying, like vapor dissipating gently,
subtly, invisibly disappearing...and leaving a living corpse for you to tend.
That harsh cold reality that your parent dies long before they die.
We lucked out big time in two ways, the day my mother had the final melt
down. Firstly, she was so rattled and so utterly distressed that when we
told her we were taking her to "a special holiday place for seniors" she
was really eager and happy to go. We had struggled and debated the
how to of this for years and here is was and it opened up and she
embraced it happily.
Secondly, we found an aged care facility only a few blocks from my home,
which offered respite care. They not only had a room available, but
welcomed us to come in the same day to discuss the facilities. We were
also told that respite care was Govt subsided (based on income and
assets) which gave us up around two months accommodation.
The facility was wonderful. The building itself was nothing special and it
was a share-room. What really impressed us was the staff care and
The respite care bought us time, we compared places, got paper-work in
order, had a chance to have her settle in and time for us to come to terms
with the next steps of something more permanent.
She is now classified as a high care permanent resident. The costs are
asset tested and we will soon be facing the next daunting task of having
to sell her home as only part of the cost is covered by her income.
Aged care is not a perfect solution. It takes time to come to terms that
nowhere and nothing is a perfect solution. Aging is a bitch. We simply can
not compare aged care facilities with independent living, that option is
long gone. All we can focus on is: is she safe, medically monitored and
are her essential needs met?
I freely admit that even though her condition has declined a little over
time, she has also improved in many other areas. She is more social, eats
three proper meals a day, has regular medical, dental, physiotherapy,
podiatry, exercise, mental stimulation, entertainment and lots and lots of
kind, respectful care.
However, it is always sad and still confronting when I think about it. I
struggle with this sense of guilt and betrayal and constantly have to
remind myself this is not my fault and this is the best thing for her.
This is not going to sound nice but I think it does need to be said. There
are times when it is a burden and I do feel angry and resentful. I
sometimes feel like walking away as I can become overwhelmed.
Occasionally she will become angry and beg me to take her home or
irritate me with repetitious banal bullshit. Yes, sometimes, I am a real
bitch...Rarely, but it is true and I mention it because anyone going
through this will know what I mean and I think it's only human. It is the
ultimate lesson in patience, tolerance and acceptance - we are not saints,
just emotional beings dealing with a relentlessly difficult situation, the best
we can at the time.
I have come to know many of the residents there and I often spend time
with them as well as my own mother. Sadly most do not have visitors or
guardians. There are many reasons for that but sadly there are cases
where parents have simply been parked and forgotten. I understand it, I
do, and this is not a judgement – it is really difficult. But, for those people
who say, "She doesn't know me at all." I will point out, no, she may not,
but you do remember her and that is the point.
Sometimes we try to live in the present moment, nothing teaches this
principle like dementia does, that is what dementia is, someone living
totally in the moment. I mention in the moment living because it is very
important. We can not have stressful, rational conversations like, trying to
explain dementia to her, or why she needs to stay in care or can't go
home, or why we are spending her savings or selling her home and giving
away all of her possessions. That is too traumatic for us, too traumatic for
her and the next day she will probably have forgotten it and we couldn't
possibly put ourselves through it a second or third or twentieth time. Also,
we need to be mindful that a big shock like that could set off a downward
When I am at my best, I move in that time frame, connect with her on her
level as much as I can, and remind myself that she is the sweetest eighty
four year old child I know. Precious are the moments - precious are the
(c) sonya green reinventingmyself.com
|Dementia and Aged Care
A personal account of accepting that my mother has
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