Do not ask me to remember,
don’t try to make me understand.
Let me rest and know you’re with me, kiss my cheek and
hold my hand.
I’m confused beyond your concept,
I’m sad, sick and lost.
All I know is that I need you,
to be with me at all cost.
Do no lose your patience with me,
do not scold, curse or cry.
I can’t help the way I’m acting,
I can’t be different though I try.
Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
love me ‘til my life is gone.
Chapter
1: A day I would rather forget
Alzheimer’s. A word we all come to know
somehow at quite a young age. I am not sure where we learn it but it usually is
something you associate with old people, perhaps your grandparents and many a
time the comedic comeback to someone’s forgetfulness. We are all guilty of
having joked that a friend, relative or even yourself have Alzheimer’s when we
have forgotten a fact or something on our to do list.
However; in May 2011 the word and illness
became a lot more real for me. My mother had been becoming increasingly
forgetful in recent years as well as losing a lot of confidence in herself. I
had been noticing it for a while but had been saying to myself that it was just
a natural part of getting older and that it was just par of course in retirement.
I also said to myself that if Dad had not mentioned anything about how Mum was
at home then why would there be any cause for concern?
Even when my Auntie
questioned me on Mum’s recent phone manner I made excuses for why I thought she
was forgetting things and said that I thought everything was fine.
However; as things got a little worse and after
various trips to the doctor she had an appointment whereby the doctor was going
to do a home visit to the house where my Mum lived with my Dad.
I usually used to call home (funny how we
still call it that in adulthood and even when we don’t live there) most days on
my way home (to my actual residence) from work but whilst still at my desk my
mobile was ringing and it was my sister. We had a minute or so of pleasantries
(I think as I can’t really remember) and then she became a little shaky and
went on to say that Dad had rung and Mum had been told that the results from
her tests had indicated she had Alzheimer’s. I don’t remember the next few
minutes clearly except becoming teary (in the very public kitchen in the
office) and saying to my sister that I would go home that night and see Mum and
Dad. She asked if I was ok and then we must have finished the call. I don’t
remember the full phone call to my parents to say I was coming over but I
remember Dad saying he would order a Chinese take away for us all for when I
got there. He then began to cry which is the first (and last) time I had ever
witnessed tears from my Dad.
He was a very stoic man and even during his
appointments when he was diagnosed with cancer not a tear was shed from him (not
the case for other members of our family.) So with his tears I knew that
everything in his and my Mum’s life had changed beyond anything they had faced
as a couple during their 40 years of marriage.
On the short journey from central London to
their house I was unsure of what to say when I got there or what state I would
find my parents in. Upon arrival they both had tears in their eyes but in that
typical British way we didn’t actually discuss what happened that afternoon.
The evening is a blur but I remember eating the earlier mentioned Chinese food and
talking about what I did at work that day and the new shirt I bought from my
favourite shop on the way home as I knew I needed something clean to wear to
work the following day due to this impromptu overnight trip. Weird how I didn’t
think to buy pants at the same time.
The evening was not as bad as what I had
imagined it would be on the journey there. I always find that when you are
travelling to the unknown your imagination always paints a worse picture than
the reality that greets you at the door. Just by us being together that night it
already felt like we were more in control of the situation but in honesty still
a million miles away from where I wanted us to be as a family.
So there it was. Alzheimer’s was going to
be a piece of our lives forever; even if we were a little too frightened to
talk about it at this stage.
Chapter
2: Treats vs. treatment
Mum’s diagnosis came just a few short weeks
before her 62nd birthday. When I tell people this it usually makes
their face become even more sympathetic to the situation than when they had
just heard the name of the disease. As I mentioned people (including a former
me) normally associate this illness with the elderly and when they learn of my
mother’s age it all seems a little more devastating.
That is not to say that
diagnosis of this disease even at an older age is any easier to swallow or
handle but with Mum’s “youthfulness” it does add an extra element.
It really means a lot to have people’s
support but I have lost count of the number of times I have been told how young
my Mum is. I wish I had been given £1 for every time I heard those words as I
would be able to give a substantial donation to Alzheimer’s Society to try and
find a cure for this illness and stop other families from enduring what we and
many others have and will in the future.
As a family we (my Dad, sister and I) carried
on the next few weeks post diagnosis without talking about it outside of emails
to each other. We decided to let Mum enjoy her birthday before we discussed the
full plan moving forward. At the start of June Mum had a lovely birthday where
we as a family celebrated with a great lunch at a local restaurant to me and my
sister in Ealing. I have some great photos from the day and looking at them you
wouldn’t know what was going on inside all of our minds at the time. In fact as
I write this I am not sure what thoughts were passing through the minds of my
Dad and sister but I know that my brain was blocked with questions and worries.
However; it was a nice treat before the
treatment was due to begin. Looking back I don’t think Mum really had
reservations about the coming weeks as I think she had already forgotten the
diagnosis day but questions running round in my mind were plentiful.
What treatment can be offered? Can it be
cured or only maintained? How will my Dad be able to handle this moving
forward? How far along the illness was she? How bad had she become and was my
Dad sheltering some of her behaviour from my sister and me?
One of the biggest worries for me was that
Dad was having ongoing treatment for prostate cancer and we knew that it
couldn’t be cured. Not only was this a scary prospect in itself but what would
be the outcome for my parents as both of these illnesses progressed?
One thing I have learnt about Alzheimer’s is that often the members of the family have a
lot more going on in their mind regarding treatment and worries versus the
person with the actual illness. Even at this early stage I could see that my
mind was a lot heavier with worry than my Mum’s and I knew that this trend
would continue as her condition worsened. But for now let’s see what the doctor
was going to say and keep giving Mum treats as this would mean things were ok
right?
Chapter
3: Nothing much has changed
Mum began her treatment and it seemed
fairly simple. It was a tablet to be taken each day and followed up with a 6
monthly appointment at the memory clinic to monitor progress (or deterioration dependent
how full you see the glass.)
My Dad was very in control of his own
illness and took this same approach with my Mum. He never really went into
detail about the drugs Mum was prescribed or what happened at the memory clinic
appointments but I knew that he had every corner covered. As part of the investigations prior to
diagnosis Mum had numerous MRI / CT scans as well as a brain scan. The result of
the latter had shown three meningioma on her brain. When Dad had told my sister
and me this we were all under the impression that this was extremely bad news and
we had thought this was a way of saying brain tumour. The follow up appointment
with the neurologist was the only appointment that all four of us went to up to
this point. This was of course not out of lack of care that we hadn’t all been
to the others but because my Dad always insisted that we didn’t need to go to
her regular appointments. As mentioned he was my Mum’s extra pair of ears to
take in all the information from her appointments so having us there just would
have made Mum more anxious. I would say to others facing a similar situation
(whether for mental health or other) it is good to have another friend or
family member with you at “big” appointments as you can never retain all the
information yourself.
However; this appointment for Mum felt more
daunting and so all four of us were present. As it turned out the meningioma
were not related to Mum’s current mental health and were something that many
people have but go unnoticed until another issue arises and they are
discovered. We were told they were nothing to worry about which was a relief
and that no extra treatment was required and just a simple yearly scan to
ensure they were not changing was all that was needed.
So things trotted along and Mum seemed her
“usual” self. Mum and Dad would regularly come and meet me and my sister in
Central London for a night out at the theatre or for a meal in Ealing where we
both lived and all seemed well. Of course Mum was still forgetful of new
details we told her but overall we seemed in control of both Mum and Dad’s
illness.
We even at this point started making plans
for what we were to do at Christmas and decided that we would spend it in
Paris. Mum, Dad and I had been due to go the previous year but had had to
cancel it due to snow affecting the Eurostar services so we thought why not all
four of us (plus my brother in law) give it another try. As we planned where to
stay and which dinner cruise to take on Christmas Day everything seemed as it
would in any other family. So on to Paris it would be and everything would
continue to be fine….
Chapter
4: A shockwave
Just before Christmas 2011 and our planned
trip to Paris Mum was experiencing some severe stomach cramps so Dad took her
to the A&E. Following this visit it became apparent that this is a common side
effect from the medication she was on and so the advice was to come off it and
move onto a different form of the medication that didn’t need to be taken
orally.
This all seemed ok and at Mum’s next memory
clinic appointment the memory nurse agreed to change the prescription. She was
to begin having a daily patch (pretty much like a sticker) to administer her
medication each day. Post-Christmas we were also due to be going on a family
holiday to Cape Town for a week in February so it was decided that Mum would
begin the new medication the week we returned. Again everything seemed simple
and straight forward and we were leading a “normal” family life.
The week we had in Cape Town was fantastic.
It was great to be away just the four of us and experience such a wonderful
city. The setting right between the stunning mountains and ocean make it a
fantastic sight to see although it is one of the only cities I have been to
where you can so easily see such a contrast in wealth within such close
proximity to each other. Together we explored the beautiful waterfront, the
rugged coastline, Robben Island, went on a walking tour of the townships and
enjoyed great meals out each evening. It was a great week and at the time I
didn’t realize that this would be the last week we would have together as a
family of four.
On the flight home Dad had started to feel really
quite unwell. I could see that Mum was very worried about him and was stroking
his arms to keep him warm throughout the flight. As I mentioned he wasn’t
normally one to complain but I could see that his constant (and long) trips to
the bathroom meant he really wasn’t himself. We landed back in the UK and I
booked him and my Mum a taxi to take them straight home whilst my sister and I
headed into our respective offices. We asked him if he needed to see a doctor
but he said that it wasn’t that bad and he would be ok after some proper rest.
Over the next 24 hours he became much worse.
He had already been due at the hospital the next day for a review of his cancer
treatment where we expected him to begin a new course of medication.
Subconsciously we knew that this change in medication was a last attempt at
keeping the prostate cancer under control but again we hadn’t really discussed
it in detail. So he went to his appointment and the doctors insisted he stay so
they could keep under observation for the time being. Quickly he lost his appetite
and what he forced down didn’t stay down for long. This was the start of what
ended up being four months in a hospital bed.
My Dad was still very aware of himself and
of course was worried about Mum as she couldn’t be left alone. Naturally my
sister and I then took over Dad’s usual role and took turns in working from
home, taking holidays and simply ensuring that either one of us was with Mum at
all times and also taking her to see Dad at the hospital as much as possible.
Dad had previously also had colon cancer
(unrelated to his prostate cancer) and a successful operation had removed the
affected area. His bowel doctor became involved in the current investigations
and discovered scar tissue from the original surgery and wanted to operate immediately
to remove it. It all seemed like a simple operation and was to be done that
very same day. Mum, my sister and I were at the hospital to wait while he had his
operation which was due to last one or two hours. As we approached the 4 hour
mark I had started to become a little uneasy. What was taking so long? Finally
the surgeon came to see us and started by saying that the operation had gone
well up to the end when Dad suddenly developed septicemia. The doctor said he
was “very unwell” and was being transferred to another hospital which had an
intensive care unit. In shock we packed up Dad’s things and got into my car
waiting for Dad to put into the ambulance which we would follow to the
hospital. At this point we had remained “normal” but once the blue lights
started flashing I could see my sister crying in the passenger seat next to me.
My Mum had seemed quiet but on arrival at intensive care she was fully aware of
the gravity of the situation and broke down. I remember her saying through her
tears that she couldn’t do anything without Dad and she was scared….as were the
rest of us.
For the week that Dad was in intensive care
we went through some massive ups and downs but we were lucky to have the
support of our extended family and friends to come and help out (i.e. accompany
us to hospital and ensure we were eating.)
Dad being the fighter as always pulled
through and then was moved to a standard ward where he made small steps of
improvement but it was clear that he would not be home in the near future and we
had to address what we would do in terms of caring for Mum.
My sister took the first step in looking up
care companies in Mum’s local area. She found one that would be able to offer
day care in Mum’s house on a one to one basis. This would then allow us both to
go to work and the one of us to be at Mum’s in the evening to look after and be
with her. We were dreading telling Mum this plan but we sat her down and
explained to her why we had to do it and that it was more for someone to keep
her company than anything else as we knew she didn’t like to be by herself. I
was surprised that she agreed and said she would give it a try.
For the first day of having a day carer I
worked from home at Mum’s house so that she could be reassured that I was still
in the house. 8am arrived and the carer arrived. She was a lady called Andrea
and was really lovely. She immediately put Mum at ease and they had a lovely
day chatting and looking at photos of Mum’s family. It couldn’t have gone
better and we felt comfortable then leaving Mum on her own with the carer the
next day.
What we hadn’t realized is that the care
company had not planned for the same carer each day so there was some
fluctuation in who was coming to be with Mum. At this stage it was not so hard
for Mum to deal with but it wasn’t long before a new carer called Jessica came
into Mum’s life. Jessica was only 24 but instantly clicked with Mum and they
regularly made trips to the cinema, into town to have coffee and cake as well
as visiting local castles and parks. The care company were accommodating in
then scheduling Jessica for as many shifts as possible and she then was pretty
much Mum’s sole carer.
Mum fell into her new routine quite easily
and it felt like we again were slightly in control of the illness. She enjoyed
Jessica’s company but no doubt her favourite time of day was visiting Dad each
night at the hospital. During these visits I would read the newspaper to Dad as
well as let him know what bills I had paid for them (so he could still maintain
the control of his house) but Mum just liked to sit by his side and hold his
hand. She never failed to greet and leave him every day with a kiss.
However; as the weeks went on my Dad
deteriorated and his strength and engagement in life dwindled. As each of us
could see this before our eyes Mum seemed to always hold strong to the
situation and still loved just sitting with him each day.
One day in June I had just gone by myself
to see Dad as I hadn’t been able to go the day before which had been Father’s
Day. As I arrived the nurse said she was glad I was there as he hadn’t had a
good day and not really woken up at all despite it being 7pm at night. As she
walked over to him with me she said “Derek, Michael’s here” to which he briefly
opened his eyes and then closed them again. I still sat and spoke to him for an
hour before then leaving to make the journey home.
However; as soon as the Tube came out from
underground my phone was ringing. It was my sister and I knew immediately it
wasn’t going to be good news as I had just spoken to her before getting on the
train. She had had a call from the hospital to say that we should all come in
to see Dad immediately. I knew straight away that this was it and we were going
to lose him. My sister and I jumped into the car and started the drive to the
hospital just near Mum and Dad’s house where he was. I rang one of Mum’s
neighbours on the way and explained the situation and asked if she could drive
Mum to the hospital in order for us to not lose any time. She said she would go
up to Mum and pick her up. Tonight had been one of the nights we had arranged
for an overnight carer to give both my sister and I a night in our own homes. We
had only done this a few times and it had worked out well for Mum which again
had surprised my sister and me. I rang Mum whilst we were en route and told her
that we were all going to see Dad. I lied and said that it was because it would
be nice to see him. She seemed calm on the phone but on arrival at the hospital
she knew what was about to happen even before the doctor confirmed it.
The next few hours we shared stories about
Dad and comforted him and despite him not being awake it felt like we were all
in the conversation together. My sister had been undergoing IVF treatment the
few months before but had been told it hadn’t worked. However; a few weeks
later found out it had.
A wonderful surprise during what was a very tough time.
She had decided to wait a few weeks before telling Mum and Dad but now was
faced with the unenviable task of letting them know on this night. When she
told them the news Mum and my sister were in tears. I held their hands
(reaching over my Dad to the side of the bed they were sitting) and comforted
Mum saying that it was good news and something for us all to look forward to.
Their tears were really quite loud that in fact the nurse on duty popped her
head around the curtain and asked me if Dad had just passed away to which of
course I said no. Looking back at this moment we laugh as the scene she looked
in on was of three people losing the head of their family with the son leaning
over him saying to the other members of the family that it was good news. She
must have thought I was effectively saying “the money is just for us now!” If
that doesn’t look like a money grabbing son I don’t know what does!
We lost Dad in the early hours of that
morning which also happened to be my 32nd birthday. I was devastated
and didn’t know how life would be for me moving forward. He had been such a
pillar in my life that I couldn’t imagine life without him.
However; not matter how much I knew my life
would change I knew that this was catastrophic for my Mum. Not only had she
lost her husband but she was aware that she could not look after herself and
continue life as she had known it for the last few years without her beloved
Derek.
Chapter
5: Where has my Mum gone?
What I have found hardest about this
illness is the constant loss of my mother. What I mean by that is that every
week I saw slight changes in her and how the disease was slowly taking almost
complete control over her mind.
A couple of people have said to me that the
cruelest part of the illness is that you lose the one you love twice. Once when
they lose their personality and then again when they finally pass away. Whilst
I know this to be true it doesn’t help being reminded of that when your loved
one is still only part way through their Alzheimer’s journey.
My Mum was very young when she was
diagnosed with the illness and in reality it had been forming for a few years
prior to her actual diagnosis day. I often find myself wondering why has it
happened to her at such a young age and did something trigger it off? It has
never been confirmed by a doctor (mainly from the fact I have never asked) but
I genuinely think it all started as a result of an accident my Mum had at the
gym in the summer of 2004. Prior to that accident my Mum had been a very
independent woman. She wasn’t afraid to drive anywhere in Europe, she loved
travelling the world and enjoyed nothing more than the company of her family
and friends whilst having a good old Scouse knees up! But when the accident
happened all this changed.
Mum and Dad were members of a club where
Dad used to play golf and Mum used to use the gym. The afternoon of the
accident Dad was part way through his round of golf when Mum fell getting into
the shower. As she was on her own she had to shout for help and then was taken
to hospital. Despite the bad fracture to her leg she seemed in good spirits and
was amused by the whole event. She ended up being in hospital for two weeks
until her operation to repair the break had been completed.
Luckily Dad was
already retired so upon her return to the house he was able to look after her
fully.
This was great but this is where her loss
of confidence started. I completely get that she was nervous to be out by
herself since she had been alone at the time of the accident but now she was
too afraid to do anything by herself. Even coming into London on her own (which
she used to do frequently) was too daunting to her. That said however; she was
never afraid to do things that she used to like so long as my Dad was there
with her.
The first time I thought that something had
started to change in her behaviour and memory was on a day when Mum and Dad had
come into London and arranged to meet me on my lunch break from work in Covent
Garden. We went to a café where we sat outside opposite the main café itself.
Mum went to the toilet in the café but when she came back out she could not see
where Dad and I were sat. I saw her talking to a waiter but clearly was not
making sense as he appeared very confused himself. I went over and got Mum and
she had a giggle to herself about not being able to find us. That was where my
worries slowly began.
I have subsequently spoken to Mum’s sisters
about when they thought that the illness started to rear its ugly head and they
did notice it slightly before me. One of my uncles had suddenly passed away at
the end of 2003 and we as a family were all up in Liverpool to make
arrangements for the funeral. At this time I was not aware but apparently as
various forms needed to be completed my aunties had recited what needed to be
put on the form for my Mum to write down. She hadn’t said anything at the time
but later when they came to check the form it had not been done. As well as
this incident there had also been a couple of incidents a year or so later
where Mum had offered to help them in the kitchen and when given a simple task
like cutting up tomatoes she had been a bit confused as to what to do. At the
time I think my aunties had thought it was slightly odd but of course didn’t
realize what it was the onset of. One of them had tried to talk to me about it
on the phone once but I had made excuses and said it was part of getting older
and was a little defensive. I guess it was a normal reaction to have when you
are scared of something?
As incidents like this became more frequent
we eventually reached the diagnosis point I mentioned before. As I said the
treatment didn’t really change things but what got me most was that I felt like
Mum was slipping away. There have been various times when her illness suddenly
gave me a slap in the face as a reminder that it will always be there.
After losing Dad we then had to arrange for
a full time live in carer to be with Mum. Again Mum took this news much better
than expected and the first carer she had was very young, living and without
wanting to sound obvious caring! They built a good relationship and during the
live in carer’s breaks during the daytime Mum continued to be looked after by
Jessica who she had formed a good relationship with.
I used to go over once a week to stay with
Mum as well which she always enjoyed and with the arrival of her first
grandchild (named Jessica as well) she seemed to be coping with the loss of Dad
as well as could be expected.
However; about a year after Dad’s death I
had gone over to see Mum for lunch on a weekend and took her to a local café in
Bishops Stortford. At this stage she always needed help being directed to the
toilet so I had taken her over to it and was waiting outside. I shouted to see
if she was finished and slightly opened the door. I could see she was fully
dressed and was laughing. I felt happy that she was happy but this was short
lived when she told me the reason she was laughing was because she and the
other lady in the toilet had not been able to work out where the door was. In
reality she was talking to her own reflection in the full length mirror that
was on the wall. Whilst this made her laugh it of course was quite a low moment
for me.
Despite things like this happening I still
think it is very important to take my Mum out and do the things we always
enjoyed together. On Monday evenings I would stay at her house so that it gave
her carer a break but also gave us a chance to catch up on gossip (mainly me
talking) and watching either “My Big Fat Greek Wedding” which reminded her of
our days living in Greece or the soaps which she now enjoyed. I slowly became
and expert at Coronation Street and EastEnders by only watching them once a
week! When we finished dinner and sat on the sofa she would always ask if she
could tickle my feet or back. She used to do that when I was a child and in a
weird way it seemed to make her really relax when she was doing it. So even
though I was approaching my mid-thirties I went along with her request. To be
honest I also can’t deny that it’s always nice to be pampered after a day at
work! We did some painting together which she also enjoyed and although the
pictures resembled those that we do as very young children it made me happy
that we could do this activity together. We made some cards once to send to
Mum’s sisters with Mum painting the front and me writing the words inside. Mum
could just about sign her name which was the finishing touch to our
masterpieces. I sent them off to her sisters in Liverpool to receive a text
back from one saying “oh my god could you make me cry anymore! Just opened
card, what a lovely surprise. Better re-do my make up now! Going to ring Pat
now.” That made me feel happy too that Mum still had the ability to make people
feel happy when she contacted them like the days prior to becoming ill.
Later on that year in the winter of 2012
Mum had been continuously telling us that she wanted some sunshine so I booked
us a holiday for the following Easter to go to Dubai. We had a great time there
and enjoyed a spot of shopping, going up the Burj Khalifa, Easter Sunday lunch
at the Burj Al Arab and even a few drinks and a shisha! We also had our first
moment of having a complete role reversal from parent to child. Mum had been
saying post Easter Sunday lunch that her shoes were not comfortable and with
Dubai being so big we didn’t want to travel all the way back to the hotel to
change shoes. So I bought her some Havaiana flip flops which she put on. Then
about an hour later she was saying they were hurting and that when we got back
to the hotel she would put them straight in the bin to which I replied that
“you will wear them again as I just spent £20 on those!” How many times have
our parents said something like that to us as children?!
Back at home my sister had also been doing
some research on how we could get Mum involved in some specific groups to help
with her illness and had come across Singing for the Brain which was run by the
Alzheimer’s Society. Essentially this was a weekly group for sufferers of the
illness to go and simply sing for an hour together. Research has shown that
even when a person is near the end of their Alzheimer’s journey and may not be
able to speak they still can sing. Amazing to think that singing is run by a
completely different part of the brain and remains unaffected by the disease.
Two things happened to be in fairly quick succession to make me really believe
this piece of research.
Firstly I had bought Mum a tickets to see
Cliff Richard at Hatfield House in the summer. She was super excited and post
dinner we went to the concert where she danced and sung her heart out. At this
stage she had already started to have some obsessive behaviour like constantly
worrying that she didn’t have enough knickers as well as struggling to get her
words out yet she sang along word for word with Cliff. It was heartwarming for
me to witness. This research was then further firmed up by my own experience.
With a few friends I had arranged to go and see the once popular boy band Five
as part of their reunion tour. I hadn’t really listened to any of their music
for over 10 years since I left University and could probably only have named
three or four songs prior to the gig. However; during it I found myself knowing
every word to all the hits including all the ones I had forgotten they sang.
Proof once again and a sure sign that this group may help Mum although I doubt
Five would be on the playlist at Singing for the Brain!
After a lot of convincing my sister took
Mum to her first Singing for the Brain meet up and she loved it. It was so
great that we had found something that Mum enjoyed and didn’t feel like she was
surrounded by old people. Whenever we tried to get Mum to go to other groups
she quite rightly pointed out that everyone else was much older than she was
and didn’t want to spend time with them. Hard to argue with that!
So as Mum continued to enjoy the singing it
was great to see her enjoying something and having a little part of her back. I
started to plan some activities for when she came to stay with me in London for
10 days over Christmas. So on the agenda was her granddaughter’s first birthday
party, a Christmas carol concert on Christmas Eve at the Royal Albert Hall,
Matthew Bourne’s Swan Lake at Sadler’s Wells and Christmas Day lunch with some
friends of mine. All of these she enjoyed as she could sing along (including to
the carols that were meant to be the choir only) and simply watch the dance
rather than having to follow storylines. On Christmas Day we had a great day
with of course lots of food and for me lots of alcohol. At about 9pm Mum seemed
a little tired whilst the rest of us were sampling some chocolate vodka shots that
we had made with left over Lindt we had to hand. So I took Mum through to the
sofa for a little nap. I wrapped her in a blanket and told her to rest her
eyes. At this point she said thank you for a nice day and told me to go back
into the kitchen as she didn’t want me to miss out on the party. How nice was
that? That was totally something my pre-Alzheimer’s Mum would have said so it
felt like we had her back for the day. It was a wonderful day but was followed
by a very challenging one complete with the usual obsessive behaviour and
changes in mood. Tough to handle but at least I had her back for the day
before.
The good days seemed to be less and less
frequent now and a lot of the time it seemed that Mum was in what I can only
describe as a trance like state. She would sit with her eyes shut and would be
talking to herself. At the start of her Alzheimer’s journey bed time used to be
a simple process of tucking her into bed and saying good night and she would be
asleep shortly after. Recently though it was turning into an hour long process
of getting ready for bed and for at least the first 20 minutes she would be
calling out…..sometimes shouting my name and at other times shouting about
things that were on her mind or simply “help me.”
This all started a few months prior when
Mum was diagnosed with piles. The doctor prescribed some cream which the carer
said she would apply at bedtime. In hindsight I wish we had stepped in at this
point but I didn’t realize that firstly they shouldn’t be doing that as a carer
and secondly what it would lead to. Essentially Mum did not like the carer
doing this and in one incident Mum hit the carer on the arm and asked her to
stop. This was a shock as it was the first time that Mum’s frustration had come
out in a physical form. The carer however did reassure us that this is
sometimes what happens with this illness and she was comfortable to stay on
with Mum which was a relief.
However; Mum could not forget the invasive procedure
of the cream and although it was no longer needed she had not only kept hold of
the memory that it had happened but in her mind it was case of the carer simply
pushed an entire tub of cream up her bottom for no reason whatsoever.
This started to come up all the time and
Mum referring to the “horrible woman” who did it as well as saying things like
“I want to kill her” and “why would someone do that to another person?” At this
point we needed to swap carer as Mum could not get past the “memory” and thus
the carer could not effectively maintain the relationship they had. Despite
changing carer things did not massively improve and Mum continued to mention
the incident and then referred to it as “painful” and “agony."
Various trips to the doctor proved that there was nothing physically wrong so we had to continue through simply trying to distract Mum when the subject came up.
Mum was now aware of her illness but didn’t
like others knowing about it and so would ask us not to tell anyone. In an
effort to keep her busy and try and let her enjoy herself I took her to see
some old friends from when we lived in Greece and Belgium. Whilst we had a
lovely afternoon she did not really contribute to the conversation which was extremely
sad to see. In all honesty I am not entirely sure she even recognised the
friends at all. However; again I always wanted to keep her doing things out of
her usual comfortable home environment to try and keep her brain as engaged as
possible and her friends knew what a great personality Mum had hidden under the
illness. The most upsetting thing for me is that I knew that when new people
met Mum they would never get to know this great woman.
My Mum, Dad and sister lived in Antwerp
prior to me coming along and so my sister and I also took Mum there for the
weekend where we met up with some old friends. It was lovely to see them and
whilst Mum was happy to see them she still could not get involved with them as
much as she would have before the illness abducted her. However; her friend did
send us a note after the weekend saying that they had a lovely time and that
Mum and her had laughed about the old times and that at other times Mum did
seem content in her own little world. But where was this world I thought and
how long will it be until she is there forever?
When I was younger people always used to
say how similar my personality was to Mum’s but now I knew that if someone were
to meet my Mum they would view her as a million miles away from the personality
I was. Essentially I felt like my Mum was missing and despite the activities
and singing we still used to do together it was not enough to bring her back.
Chapter
6: Saving Mrs. Long
Whilst Mum’s behaviour became increasingly
challenging I found myself becoming fiercely protective of her. Two occurrences
solidified this feeling for me.
Firstly we had the new live in carer who
was quiet but seemed to be getting on with Mum fairly well. She didn’t seem too
experienced with dementia which worried my sister and me but we had decided to
keep her until Christmas when she would go on a break whilst Mum spent time
with us and for the new year we would request a new fit for Mum. We tried to
minimize the number of carers Mum had as she didn’t like too many changes but
we thought this would be for the best.
However; on a Thursday afternoon the carer
rang both Natalie and I to say that Mum was being very aggressive towards her.
Firstly we said to her that she needed to ring the agency and ask them to come
out and to help her which she said she had done and the agency had said to
simply leave Mum in the house. This is where the issue of the carer’s lack of
English language came to show. What I am certain the agency meant was to leave
the room where Mum was and go somewhere else in the house where you can hear
her but give her the space to calm down…not just leave the house as she had
mis-understood. After a long conversation it became apparent this carer did not
want to stay with Mum and so I said I would call the agency to have her moved
to a new family and we could have a new carer for Mum. To this she became quite
forceful that I mustn’t do that otherwise she would lose her job. Firstly; she
wouldn’t have lost her job as I wasn’t saying there was an issue with her merely
that the fit between both parties wasn’t right and secondly my Mum is my main
priority so I would call regardless.
The agency was not available so I left
messages and emails asking them to call me urgently. I didn’t hear back from
them that evening but when I called home later on the carer had said Mum was in
bed so I thought everything would be ok for the time being.
Unfortunately that was wishful thinking as
in a few hours’ time it would be the start of the worst few days I had
experienced with Mum’s illness. At 7am my sister rang to say that Mum had been
on the phone to her since 6am again worried about the usual pain and horrible
people that had become standard content for all conversations with Mum. My
sister had calmed Mum down but was concerned that the carer had said Mum had
been up for hours with Mum and was on the verge of calling the police. Confused
my sister again said that if she needed immediate help she needed to call the
agency. I said to my sister I would chase the agency when I got to work as I
still hadn’t hear from them; however it turned out to be too late. My sister
had a call from one of Mum’s neighbours saying the police had been at Mum’s
house and that when she went over to see if everything was ok the carer turned her
away saying that “no – everything not ok” before closing the door on her.
Rather frantically I then rang home. As the
carer picked up the phone she then screamed “she beating me, she beating me,
Pat no ahhh” and then hung up. I was shocked, scarred and didn’t know what to
do. Did this mean that Mum was really attacking the carer this time? I rung
back and the carer picked up the phone immediately and seemed fairly normal?! I
asked her to put me onto my Mum to which she refused saying she was too
aggressive.
I was furious! I knew that I would be able
to calm Mum down and how dare she not let me talk to her. I quickly left work
and raced back to Mum’s. On the way to
the house again I had not known what situation I was going to arrive into and
my greatest fear was that Mum was going to be sectioned and taken into
hospital. On arrival I found the police and paramedics as well as the
management of the care company outside of the house. Upon seeing my Mum (who
was calm at this stage) she burst into tears and said that the carer had hit her.
A very confusing situation to be in but immediately I felt protective of Mum
and wanted the care company out of the house. They quickly gather the carer and
their belongings together and left.
Then after talking with the police who
confirmed that Mum couldn’t be sectioned as she was in a private building and
with the paramedics who said she didn’t need to be taken into hospital it was then
just Mum and I in the house. Mum was then calm at this stage and just happy to
be with me. I told her I was going to be staying the weekend and that the lady
would not be back so she relaxed.
Whenever Mum would get upset it always came
down to the fact that she wanted to live with either me or my sister. We would
explain to her that we couldn’t as we were both out at work in the daytime but
she still would say it was what she would prefer. At this point I did wonder
whether she knew enough to think that if she behaved badly with the carer then
they would leave and she would get what she wanted by having me there with her.
In hindsight I know this now is not something she would have been capable of
but sometimes it did used to feel like she would play tricks like a child does
in order to get things their way.
The situation with the police and ambulance
was possibly one of the worst days but at least the care company was gone and I
could focus on trying to make the weekend as nice as possible as well as getting
a new care company. I knew Mum would be reluctant to accept anyone new in the
house but the lady I subsequently found was so nice and made Mum feel at ease.
The police and paramedics during the crisis
moment were fantastic in calming Mum down and helping us sort out a review of
Mum’s medication which was very welcomed but it was certainly the most
stressful time we have had with Mum’s illness and not a few days I wish to
repeat but it did highlight how fiercely I would protect my mother. It was the
first time I realized how vulnerable she really was.
The second incident that I experienced this
feeling was in December 2013 (actually only a few days prior to the above one)
when I had taken Mum to see all our extended family in Liverpool. I and a few
other family members were also taking part in the Santa Dash which was a 5km
race through the city dressed like Santa. The morning had started well and my
Uncle and cousin were looking after Mum whilst we did the run. The “dashers”
had decided we would run together so although it would be a lot slower than my
usual pace it was all due to be about fun. We were about 1km in when my cousin
rung my sister to say that Mum had had a toilet accident when they were waiting
at the finish line. I knew that Mum would be in a bit of a state and upset that
it happened in front of other people.
My sister said to my cousin that I would
run quickly to the end (since I would be the quickest) and then take Mum home
to get washed up. I ran as quickly as I could swerving in and out of 10,000 Santas.
I must have looked like a complete penis as this was after all a fun run and
here I was racing it to the end with my Santa outfit open as I was going so
fast. Fellow participants must have been thinking I was trying to win it when
in fact I just didn’t want Mum out longer than she had to be.
I reached the finish line and ran to where
Mum was waiting. She was actually ok and asked me how the run was?! My cousin
had kindly changed Mum out of her trousers and had put her in a spare pair of
Santa trousers we had so that we could at least travel back to the house and
shower.
I took Mum home to shower her which she was
ok with and said she always enjoyed me washing her hair. Again it felt like I
had to really look after Mum and protect her. She had a great rest of the day
at the family lunch which in one way made me happy but at the same time made me
realize that she had forgotten what had happened in the morning meaning her
illness was working hard at ensuring new memories were not made.
I know there is no way that I can save my
Mum from Alzheimer’s but by being there as much as I can makes me feel a lot
more in control. What I am grateful for at this stage is that at no point has
Mum forgotten any family member or even the fact that she has a grandchild.
Chapter
7: Still lots of laughs
My sister and I both read various books
that dealt with Alzheimer’s but none of them quite matched what we were
experiencing with Mum.
I think that the nature of the illness is
that each person does behave differently. Some simply create their own world
and live quite peacefully within that, some become very withdrawn, others
aggressive. There is no telling how someone will be.
However; one thing was certain. One of the
only ways we could get through this was to sometimes laugh about things when
they happened. I want to share a few examples of when things just had to be
giggled at (either at the time or shortly after it happened!) Here is a
selection:
What
shall I wear?
About 6 weeks prior to my sister’s due date
I decided to have a baby shower for her at my house. It was going to be on a
Saturday afternoon and we would indulge in cakes and pastries whilst decorating
some blank baby grows, bibs and hats. To add a little more glamour to the party
I had arrange for a mobile beauty therapist to come round so that everyone
would have a mani and pedi as well. I had gone to stay at Mum’s the night
before so that I could bring her back to mine in the morning ready for the
party. At this stage I still liked to help Mum be as independent as possible so
when it came to picking her outfit in the morning I left her to choose and said
I would be back in a minute. Returning to her bedroom she had a top on and said
that she thought she would just wear that.
Ordinarily whatever she picks I of
course let her wear but since the top she had picked was an old jumper of my
Dad’s this time I thought no! I smiled and said that perhaps together we could
pick an altogether more glam outfit (not that my Dad didn’t have good taste in
jumper of course) for the occasion. Note to me and my sister….let’s clear out
Dad’s clothes before more confusion (and laughs) occurs!
Still on the clothes theme Mum also had a
rather classic moment on Boxing Day when we went to visit a cousin of mine. I
had bought a Christmas jumper (at the time very in vogue) but it had been one
with a difference. It had three reindeer on the front (including Rudolph) but they
were mounting each other in rather a naughty manner. Now to be fair to my Mum
most people didn’t notice about what they were doing until a few seconds after
looking at it but upon seeing my knitwear Mum simply said that she liked my
jumper and she had one exactly the same. Really?! I couldn’t help but laugh and
say that I think hers was different but she was adamant that they matched. Oh
well…not one to disagree we chuckled together and carried on with the
festivities.
Can
I go and see Guns N’ Roses?
I got over to Mum’s house one day after
work for my usual Monday visit. I was chatting with Mum in the kitchen and she
said she wanted to go and see Guns N’ Roses as they were playing in Harlow.
Now
Mum had always said she liked Axl and the rest of the band when me and my sister
were into them in the early 90s but I knew full well the band had split and
even if they were to reform would they really be playing in the delights of Harlow
Town? Hardly a rock n roll place is it?! I said such feelings to Mum to which
she herself giggled and said “you don’t believe me do you?” to which the only
response was quite frankly no! Then the carer pulled out a brochure for the
Playhouse in Harlow which had been posted through the door and to my surprise
there it was….Guns N’ Roses were to play Harlow….well a tribute band at the
very least! It was lovely to see Mum smile when I said that yes she could go
and I would book a ticket to see them for both her and the carer. Now there’s a
sentence I never thought I would say! I got them second row seats and they had
a good time which is something that cannot happen enough for Mum.
A
little parcel arrived
In December 2012 Mum’s first grandchild was
born. It was a bittersweet time as it was so amazing to have a new addition to
the family but was sad since it had only been 6 months since we lost Dad and he
would have so loved to have met little Jessica Violet Edwards. Only 2 days
after she was born my sister and her daughter arrived back at their home. I had
arranged to take Mum over so they could meet. When opening the door my sister
was holding Jessica and when greeting Mum was a little overwhelmed and shed a
few tears. I never asked but I know it was because Dad was not there with her.
However; Mum was so excited and shared many cuddles with Jessica and it was so
great to see the delight in her face at meeting her. The funny part of the
afternoon was that as Jessica was laid down in her mosses basket to sleep Mum
and I had got up to put our coats on to leave my sister and brother in law in
peace for a while. However; when Mum put on her coat she unknowingly dropped it
a little too far to brush Jessica across the face. My sister and I smiled at
each other as both Mum and Jessica didn’t even notice!
Do
you remember Harry?
Driving along in the car once Mum suddenly
said to me “do you remember Harry?” to which the only response was no I don’t.
Who was he? Many people comment that I remember everything so I was surprised
that there would be someone in our lives that I did not recall however Harry
was certainly not in my memory bank. After a few questions Mum managed to
articulate that he was an ex-boyfirend of hers from her teenage years.
Well…since that we pre-Dad and thus pre my birth I could be let off the hook.
Cue lots of laughter from me…why would I remember him and what a random thing
to suddenly come out and say after presumably over 40 years of him never
getting a mention?! I wonder what else she may ask / tell in years to come?
Isn’t
Kieran amazing?
For Mum’s Christmas present in 2013 I had
told her I would take her for lunch in Covent Garden followed by seeing the
musical Let It Be at the Savoy Theatre. She was very excited for her day out
and I thought it would be a successful show to see as it contained no storyline
to follow and was simply the music of The Beatles (i.e. her youth.) We had a
lovely lunch and went to the theatre when the band came on. We sang and danced
along and then during one of the breaks she shouted there he is – Kieran! Now
my cousin Kieran was in a band at the time and they were pretty successful. Mum
was excited by this and asked about him all the time but it then occurred to me
that she thought this was him on stage! Oh well; if she was enjoying it what
the hell! Later on that day she told her sisters (including Kieran’s mum) that
we had been to see his band and they were great! Smiles all round then….
Chapter
8: A broken heart
In 2013 Mum had sometimes been a little
short of breath when we were walking around town, to the shops or to the
cinema. It hadn’t really occurred to me that it would be anything too serious
as I knew that she wasn’t as active as she used to be and I do walk pretty
quickly so I was probably just being a bit too quick on my own feet.
However; as she had a chest infection over
the winter we took her to the doctor who said we should have some x-rays.
Countless x-rays later (as they couldn’t get a clear image) we then seemed to
be moved on to having a breathing test as well as a CT scan.
As this progressed in my head my worst fear
was that despite Mum having never smoked it was going to be diagnosed as
something like lung cancer. The thought of this had me arrested with fear so I
didn’t actually mention it to anyone.
I took my Mum for the breathing test which
presented itself with a few challenges when Mum had to follow various
instructions of breathing in, holding her breath and then breathing into a
tube. A sequence of instructions had already become too much for Mum to handle
and was usually was the part of the 6 monthly memory test that did not go well so
the breathing test was no exception. The nurse asked if Mum had ever been a
smoker or had worked or lived anywhere with asbestos. Again this made me worry
about the big c; but when Mum answered no to both questions he seemed satisfied
with the answers. However; the nurse then said he had all the information he
needed and we were free to go. Feeling safe in his lack of urgency to see
another doctor or be referred anywhere else made me think that my worst case
scenario could not be a possibility.
A couple of weeks later my sister took Mum
for the CT scan at her local hospital. It turned out to be a long day for both
of them. During the scan the doctor had said that Mum had fluid on the lungs
and they needed to run more tests. An ultrasound later and they mentioned that
there was a growth on her heart and she would need to stay in overnight for
more tests. My sister rang me and whilst I felt a little relieved that it
probably meant that lung cancer was not what it was it now moved on to me
thinking that the growth on her heart could equally be cancerous. My sister and
I were unsure of what to do. As I mentioned Mum was not great at sleeping
through the night so how would she get through a night in hospital with other
people around? We decided that my sister should go to Mum’s house to get her
some overnight gear and then come back to the hospital. This would give Mum
around an hour on her own and we could see how she dealt with it. At this point
I was more worried about whether the nurses would be keeping a close enough eye
on her to not let her wander out of the ward and even the hospital.
The trial run went ok and although Mum was
frustrated when my sister arrived back at the hospital we felt comfortable enough
to leave her for the night; especially since she was moved to a ward which was
less open and therefore less chance of her “escaping”.
The next day Mum was released and we were
given an appointment to meet the consultant in week or so. Whilst I was still
worried about this growth I put it behind us for the time being as I had
already planned a day out in central London with Mum. We had a great weekend although there were a
couple of times when Mum would remember that she had been at the doctor for her
heart and was worried by it. It seemed so strange that some things could stay
with her when other new memories wouldn’t. The new memories that she could
cling on to definitely seemed to be ones that she had formed an emotional
attachment to whether it be a positive or negative emotion.
The date approached for both my sister and
I to take Mum to the consultant to discuss what to do about the growth. Mum was
fairly calm when we got to the hospital and whilst they did her ECG and blood
pressure. I found it a little strange that they asked me to leave the room
whilst she had her ECG as she needed to remove her top; after all Mum did trust
me to shower her so I am sure this would be ok but I went along with the request.
As we met the consultant he explained that
what she in fact had was essentially a large non-cancerous
tumour. Relieved to know it was not cancer I felt a little more relaxed
although my sister and I then faced a very tough decision.
Since my Dad had died we had both become
power of attorney for both my Mum’s finances and health. At the time of sorting
out the documents to do both of these I hadn’t really thought much about the
health one other than we may as well do it at the same time as no doubt in the
future we will need to make decisions about Mum’s Alzheimer’s treatment but
never did I think that what was about to happen would be on our plate.
The consultant said that ordinarily when
diagnosing this medical condition they would operate on the heart to remove it
as leaving it there posed a risk to part of the tumour breaking off and
becoming a clot which in turn could be fatal. However; given Mum’s mental
health he said the hospital team were undecided as to whether she would be able
to handle the operation and recovery and thus were looking to us as to what we
wanted to do. Being put on the spot was a lot of pressure and whilst I had an
idea of what I thought would be best I needed more time to think and discuss it
with my sister.
We agreed to reconvene in 6 weeks’ time
with the consultant when we would give him our answer. He told us to keep in
mind that even if we did decide we wanted Mum to be operated on the surgeon may
decline to take her as a patient on medical grounds. As we were leaving he
asked Mum if she was ok and slightly aggressively she answered “what do you
think….no I am not ok.” He calmly asked her if she wanted to ask him any
questions and she said “yes…am I going to die?” Can’t say she didn’t get to the
point…was she sure she was still British getting directly to the point?! He
held her hand and said no and that everything would be fine.
It
was always difficult to talk about things in front of my Mum as she would get
very anxious so we when we left the hospital we went straight back to her house
for a coffee and a biscuit.
On the way back to London my sister and I
discussed what our initial thoughts were and we (thankfully) were in agreement
that we couldn’t see how Mum would be able to cope with an operation of that scale….this
was going to be open heart surgery if we put her through it. She was already
having difficult days and trouble sleeping so if we through in a change of
scenery when she would be in hospital and then combined with that the need for
a massive anesthetic, wires and tubes put into her that she mustn’t remove and
a lengthy convalescence period it just didn’t seem possible. I was frightened
by the prospect of allowing Mum to live with the risk of sudden death but we
really had to think of what was best for her now and that really did seem like
the best option.
The consultant then rang us a few days
later to say that he understood it was a lot of information for us to process
and he had therefore made us an appointment to meet with the surgeon in order
to discuss options and for us to “not feel any guilt” in what we decided upon.
His words on the phone implied to me that he knew what we were thinking and
also that he agreed with what we would eventually be going back to him and
saying. Very nice of him to do this; downside being that the surgeon was based
in Basildon hospital which was completely the other side of London to us!
Regardless we were pleased to be able to speak with him so off my sister and I
set at 8am to drive to Mum’s to pick her up and then drive another hour to get
to the hospital. It was a blustery winter’s day so Mum was not pleased with
walking outside but we made it just in time for our appointment at midday.
Checking in at the reception desk blank faces were looking our way and they confirmed
they had no record of my Mum at all. Cues tears from my sister as quite rightly
she said it had taken over three hours to get to this point and getting Mum out
of the house was a challenge so we couldn’t just go home without seeing
someone. I was stood in between my sister and Mum at the desk so with one arm
around my sister to comfort her I tried to hide the situation from my Mum so
that she wouldn’t get worried about what was happening if she saw my sister
crying. The reception team was very good and said that the mistake was no fault
of ours and if we waited the surgeon would see us that day. Phew!
So after a while we were called in to see
him. He wanted to gather as much
information as possible about Mum and her condition so I told him about the
difficulties at the breathing test which he acknowledged and I could tell that
he was already thinking that Mum would not be able to handle the recovery
period post operation. He asked how Mum was with situations she didn’t know
which my sister answered (in order to aid Mum) that she got nervous about
things and could sometimes be aggressive to which Mum sharply said “who gets
aggressive? I never get aggressive” in quite an aggressive tone towards my
sister. Later my sister and I laughed that at that point she needn’t have said
any more to get the point across to the surgeon! The surgeon did say he had
performed the operation on another man of a similar age to Mum who also
suffered from Alzheimer’s but since he still lived at home alone he clearly was
at a much earlier stage of the disease and thus the cases were not really
comparable.
Still; we left feeling like we were edging
towards the right decision. Heading home though Mum was clearly upset by the
ordeal and had become confused telling me that I was supposed to be her mother
and should look after her. This was upsetting to hear as it was the first time
that she had ever confused me as another family member. It wasn’t until I
relayed the remark to my sister that she said that when they had been at the hospital
for the CT scan Mum had answered the question of who she had with her as “my
sister” when in fact it was her daughter. Given how hard that day had been for
my sister I can’t imagine that moment had made it any easier.
When we reached home Mum was in a terrible
mood and it was very hard to leave her to come back to London. She was saying
to my sister that “Michael doesn’t care, he is never here” and things like
“well you go off and leave me here…I will go away myself as I can’t do this
anymore” which are painful to hear but I just had to keep reminding myself that
it wasn’t really my Mum talking. I knew that she wasn’t in control of what she
said at times like this and ultimately she wanted to come back to London with
us and stay there. We had contemplated this about a year before but had been
advised that moving her would cause a major decline in her condition so we were
best to keep the situation as it was with her in her house as this was the
constant in her life.
After the way she had been that afternoon
it was clear that she wouldn’t be able to handle the operation and so I knew
that we would have to opt out of surgery and keep going as best we could. I
think my Dad would have agreed with us had he been here so that is all we could
hope for.
Chapter
9: I’m starting with the (wo)man in the mirror
Mum had started to struggle with her words
in late 2013. I wouldn’t say that communicating with her was too difficult but
she definitely had begun to forget more words than in previous times. As she
still focused on what happened with the “horrible woman” from the suppository
incident often conversations would just go down that route. It always seemed
that once she had been talking for a while and had run out of things to say she
would revert to this topic as it was something she could say without issue. It
was either “horrible woman”, “it’s painful” or “I’m frightened”. At first my
sister and I had taken Mum to the doctor various times when she complained of
pain but nothing was found to be wrong. After this we realized that it was
simply these words came easily to her and were sentences she could on rely on
saying without a problem.
We could continue to have conversations
about my day or other members of the family but when responding Mum would often
forget a lot more words and struggle to get her point across. I found that in
order to keep her in a positive mood it was always best not to ask open ended
questions as this would allow her to revert to her default sentences which were
never of a positive note so simply launching into what I had done or
questioning her on what I already knew she had done was definitely a better way
to kick things off. I also found that when asking a question like “what did you
have for dinner” resulted in her asking the carer (who I could usually just
make out in the background) and then Mum would simply say on the phone “so yes
that’s what we had” thinking that I would have been able to hear. Again this
was an example of not understanding instructions; even if the carer told her to
now tell me on the phone what they had just said.
Later on in the year though Mum started to
refer to “the other lady” who also had the same problems as she did and experienced
the pain and hatred for the “horrible woman”. At first when she kept mentioning
how nice this lady was I thought she was trying to talk about the new carer as
she had formed a great bond with her. However; when I said “oh you mean
Christina” she would be adamant that no it wasn’t her and whilst yes Christina
was nice so was the other lady.
It was during one of my Monday night visits
that Mum had gone to use the toilet and was gone a while so I stood outside the
door. I could hear her talking to someone and so I knocked on the door and
opened it to see if everything was ok. She was talking to herself in the mirror
and when she saw me she said that she was talking with the other lady. What was
different about this conversation was that she was talking completely without
issue of finding words or confidence. She was telling the lady about her
daughter and asked whether she had one too. As upsetting as it is to see that
your mother no longer recognises her own reflection since this lady was nice
and essentially a friend to Mum that kind of made me happy inside.
So from then on whenever Mum referred to
the other lady I went along with it as she seemed to make Mum happy. I even
actively brought her into conversations when Mum was having a low moment to say
well at least we have a nice carer and also the other lady who you like and it
seemed to strike a note with her. This lady genuinely made her happy.
Sure Mum said some things like “my Michael
is a little bit weird” to the other lady which is not something I wanted to
hear but even after coming away from talking to her she would still be pleased
to see me so I learnt not to take these things so personally.
So for now Mum had a new friend and I
didn’t care if she wasn’t physically there. All I wanted was for my Mum to feel
happy in her house and she did seem to. Luckily mirrors were plentiful in the
house so she didn’t have to stray too far if she wanted a conversation with her
friend.
However the friendship seemed a little
short lived as only a few weekends later the carer rang me to say that Mum had
got frustrated during the night and had hit out at the reflection in the
mirror. I am not sure why. Was it that she was seeing someone else this time or
had she gotten fed up with the other lady always being there to see her? I
don’t know and don’t think we will ever fully know what was happening in her
world but I hoped that like all fights between friends the dust would settle
and things would resume as they were prior to this incident.
Chapter
10: Choose life, choose sleep
As time went on in 2014 Mum was deteriorating
which as you can imagine was hard to see.
My Monday night visits would tend to follow
a very similar pattern in that when I arrived she would often be in her world
and be complaining about how bad her day had been. It would be easy for me to have
her notice me and to be excited that I was there. I would then have her stand
with me in the kitchen while I cooked dinner and she would tell me a few things
about her day and vice versa. We would watch our usual soaps but at about
9:30pm things always started to change. It became like a witching hour. Mum
would start to talk more about “horrible things”, “it’s painful” and “I can’t
do this anymore” and almost no amount of distraction could stop her. Getting
her ready for bed was much more of a lengthy process now as she struggled to
follow instructions and start to settle.
I had discussed this with Mum’s doctor as I
knew that her carer was not getting much sleep at all now that Mum’s own sleep
pattern was very unpredictable. On my weekly visits I would find myself up at a
minimum of once per hour to answer her calls and on some occasions even having
to sleep in her bed next to her as it was every 30 minutes she would start to
get distressed and either be shouting to herself or wanting to get up and wander
around.
As a result of this the doctor prescribed
Tamazepam to be taken before bedtime (for Mum not me.) My sister had been a
little worried about this as she was aware of how strong the drug was;
particularly as we both had been fans of the film and book Trainspotting back
in the 90s so we had seen it in action. However; the initial prescription was
for just half a tablet a night and it was not making a difference at all. Mum
was still up all through the night so I needed to call the doctor for help to have
the dosage increased or to try something else.
I knew there was another drug available for
Alzheimer’s patients but I was also acutely aware that it usually was reserved
for people who were at the end of their journey with the illness as it
essentially seemed to render people into a state of complete unaware in order
to make them more comfortable. I was hoping this was not what would have been
offered.
I stayed at Mum’s on my usual night one day
in March 2014 and it had been a good night. Mum had been chatty and eaten all
the Pad Thai I cooked her, some fruit for dessert and a Muller rice pudding
(one of her favourites.) The witching hour began as usual at 21:30 and I
started to get Mum ready for bed. She was more agitated than usual and it took
some time to get her in her pajamas and into bed. I then went to bed as well
but was up every 20 minutes or so from 11pm until about 3am as she was calling
out. I ended up sleeping in Mum’s bed with her as the frequency was also
increasing and sometimes was every 5 minutes that she would be back up again.
Shattered I went to work the next day knowing that this couldn’t go on. I
called the doctor and asked them to call me back.
Unfortunately I missed their
call as I was in a meeting but I thought I would have to call them back the
next day. That night Mum’s carer rang me in tears; not because Mum had hurt her
but because she was upset that she had not been able to get Mum to eat anything
in the two hours they had sat at the dinner table together. A complete reversal
from how she had been with me the night before. I still think there is
something in this illness which means that Mum is more comfortable and able to
function as “normal” when she is around family members and it solidifies my
theory that she would not have deteriorated as much as she has done if my Dad
had still been alive. Talking with her carer I could hear Mum in the background
screaming and fighting with the other person who was occupying her world. The
shouting was severe and I could even hear her saying things like “get out you
dirty bastard.” After a while she calmed down and when she came on the phone
she told me that she had fought with this other person but couldn’t articulate
why. As upsetting as it was for me to hear I also could not stop thinking that
how scary it must be for Mum because as far as she was concerned there was
someone in her house she didn’t like and no matter what she said to them or us
we were doing nothing to help resolve the situation for her. Mum was then calm
and then apologised to me for always moaning about things.
It was at times like this that I sometimes
did wonder was Mum more aware of her behaviour than she let on. I had
increasingly noticed that her manners were more and more like that of a toddler
in that as soon as she knew that she was in trouble she would change what she
had said. For example if she moaned that she didn’t get to see me, Natalie or
her granddaughter and you explained that she did she would then say “no that’s
not what I meant. I was just talking about the flowers in the garden” in that
pretense that children often use. I also still thought about whether she knew
that if she behaved badly enough with carers by not eating her food then she
would eventually have to be moved and in her hopes that meant moving to be with
me. Around this time I had called Mum and once I said goodbye she didn’t hang
up the phone and I could hear her say to her carer “oh that was lovely to talk
to him…why can’t I live there” and then the line went dead. I knew it was on her
mind so perhaps it was that she was behaving in this way to get what she wanted
like a child does when they want to be taken out of school / nursery? It was
nice to hear her say she enjoyed talking to me though.
None the less we couldn’t go on like this
without sleep so I rang the doctors again and after various attempts we got
some new medication to trial but things did not improve. Mum’s hallucinations
were more vivid and much more frequent throughout the day. She was still
talking about women in the house who were battering her and the only way she
was able to manifest her worries and fears was to be aggressive back to the
only person in the house with her which was the carer. The intensive outreach
mental health team became involved again and deep down I knew what was coming.
Chapter
11: Inside
The mental health outreach team’s daily
visits were not helping calm Mum’s behaviour and I knew that both she and the
carer could not go on the way they were as it was not safe for either party. We
were told that they would be sectioning Mum under the mental health act. It
sounds so severe and you can’t help but imagine all those films that depict
mental health hospitals as scary and an awful place to be. My sister and I were
not there for the moment when Mum was taken to the hospital but I can only
imagine how helpless she must have felt. I couldn’t believe that almost a year
to the day since our lovely Easter break to Dubai Mum was being taken to
hospital for what could be up to a 28 day stay whilst they worked out the best
future care plan and medication for her. How had things deteriorated so quickly
within the space of a year? I never thought these days would be upon us so
quickly. However; on the day she was taken in to hospital I actually felt rather
numb. I think it was possibly that I was really trying to see it as a positive
thing for Mum. Rather than focus on the stigma attached to being sectioned I
tried to think of it as someone just being taken into hospital as they need 24
hour specialist care (rather like intensive care.) I also was hoping that
although it may have meant that Mum would not be allowed to come home to live
in her house again on a one to one basis with a carer that it would mean we
could get her medication improved and stabilize her moods so that she could
live a happier life in her world once the team were able to give advice on
where she should live moving forward. That’s what I was hoping for anyway.
Speaking to Mum that night she was surprisingly upbeat (primarily due to the sedative
they had given her) and even asked about her Granddaughter calling her a little
imp! I strangely felt quite safe that she was being looked after and whilst I
could of cried forever given that she had already been through so much with
this illness and it was totally unfair that she was now somewhere she didn’t
want to be I was still focusing on the positives that I hoped to get from the
situation and process of being sectioned.
48 hours after Mum had been admitted to
hospital my sister and I were travelling up to see her. We had bought clothes
for her (as she only had a small bag with her) and were not sure how she would
react when we got there. On arrival we were pleasantly surprised to see that it
was in fact a small place and not a big hospital or anything like you imagine a
mental health facility to look like (courtesy of Hollywood films.) We went
inside and had actually arrived at dinner time so all the patients were in the
dining room. We were stood just outside the door talking to the nurse when Mum
happened to look up and waved. She came over and started talking to us (albeit
not entirely about anything that was a “normal” conversation) but she seemed
very relaxed. We arranged for Mum’s dinner to be brought into her room so that
we could sit with her whilst she ate since meal times were meant to be a
protected time. We made our way to her room and weirdly it felt like being in
University halls again. Her room was a nice size with a private bathroom and a
little table and chair she could sit and eat her meal at. She chatted away and
ate all of her dinner without much prompting which again took us by surprise.
We put some music on to have a sing a long and showed her the new clothes we
had bought which she was very happy with. She was in such a good mood we even
managed to take a selfie together which is something I didn’t think we would be
doing on our way up there to visit. I had genuinely thought that Mum would be
so upset that it would be a bad night in every way.
Post dinner we went into the common areas
of the hospital (but it felt more like a care home) and had a seat together.
Mum called us her saviours and kissed us both. We had wondered if Mum was
heavily sedated but the nursing staff said she wasn’t and that since the first
night she had been very relaxed. The other patients in the facility were really
friendly and Mum seemed to enjoy their company. She was telling us how one of
the gentlemen loved to dance and then even had a conversation with another lady
who said she need to go to the hairdresser as she was in work early in the
morning. Mum agreed with her and they seemed to understand each other. Even
when it came for Natalie and I to leave Mum was very relaxed and simply bade us
farewell and said we would speak to her in the morning.
On the way home I can’t deny we felt good
that she had settled so well but we did know that we would need to take each
day as it comes. We talked about how it was strange se had settled so well as
she had always been so resistant to even going to a day centre for activities
let alone staying somewhere 100% of the time yet tonight she seemed ok. Whilst
this was good we did have a worry though that what if Mum didn’t display any of
her recent behaviour and thus was discharged without any change to her
medication and as soon as she got home would go back into the same pattern?
Sadly we didn’t have to wait that long for
that worry to be alleviated as the following 48 hours were not good ones. Mum
was very agitated with her usual outbursts as well as hallucinations and
couldn’t be calmed by the sedatives. She seemed to be in the small percentage
of people who don’t respond to them that well. Whilst Natalie and I didn’t like
to hear of Mum being so distressed on the other hand we were glad that the team
looking after her would now know exactly what they had to fix.
Following these
two days I had arranged to pop in to see Mum and again was surprised as to how
she greeted me. She was very calm, asked how I was and cuddled up next to me on
the sofa. We ate some chocolate together and watched a little bit of TV. It was
a lovely hour and again was the polar opposite to what she had been like the
two days before. Why was she so up and down and pretty much on a rollercoaster?
It was so hard to tell what mood she would be in from one day to the next.
Leaving that night again I felt relief but
it was short lived once more. We were due back at the hospital 24 hours later
for a meeting with the care team and upon arrival I could already hear Mum
through the locked outer doors shouting for Natalie. I went in to see her and
found her in the dining room being very aggressive to people. The nurse was
trying to calm her down but Mum responded by saying “shut up” and pulling the
table cloth off the table. As soon as the nurse put it back on Mum pulled it
straight back off again. It was horrible to see and was exactly the behaviour
you see from a toddler not getting their way. It wasn’t nice to see her regress
to this level. She looked at me and shouted that “she battered me” to which without
thinking I responded that I didn’t think she had.
Wrong answer. She then
pointed at me and said she was finished with me and didn’t want to see me
again. As soon as I had said what I did I knew it was never right not to agree
with her as she couldn’t rationalize what I was saying and to her it just felt
like a personal attack back at her. I knew that she had been aggressive with
other patients so I started to move her to the lounge area which I knew was
empty. When we got in there she wouldn’t stop saying that they were battering
her and couldn’t be calmed down. Natalie then arrived and when she asked Mum
who had hit her she responded by pointing at Natalie and said you. It was awful
to hear. We then all sat down but Mum still was not calm at all. She was sat
with her eyes closed, crying and screaming out that she couldn’t do it anymore.
The lowest point for me was when she said to us both that if Dad were here he
would kill us for not looking after her.
We spoke to the medical team and they said
that the things she said when having an outburst where not aimed at us and she
would have said the same to whoever was in front of her at the time.
Reassuring
but still hard to digest. During our conversation with the team it seemed that
they felt her behaviour when agitated was off the scale for a dementia patient
and that there possibly was some other reason why she was so up and down. They
had stripped back all of her medication and were only giving her an
anti-psychotic drug which they hoped would bring her mood more in line.
Again the following days were much more
settled so it really did seem that Mum was on an unpredictable journey that did
somewhat more resemble schizophrenia than dementia which was a scary thought.
If this turned out to be true then how were we going to deal with this?
However; for now we had to sit patiently and see if they could find out what
was wrong. The team asked if they could have some days with just Mum (i.e.
without us calling or visiting) to see if that would stabilize her and to
ascertain whether in fact seeing or speaking to us actually made her too
unsettled. It was hard to go from speaking every day to not at all but if
that’s what it took to make her have happy days again then so be it.
It felt strange not speaking to her
everyday which in some ways made it feel like we had been suddenly bereaved but
we could ring for updates from the team. They were helpful and re-assuring even
though often the update would be that she had been agitated during parts of the
day and they had had to use more sedatives to try and calm Mum down. We still
continued to visit once a week and the visits to begin with did not go well. As
described before Mum did not seem happy to see us and even the cake we were
taking was not enough to distract her as it used to.
However; one bank holiday in May we both
went up to see Mum and we had a lovely visit. I had just run a half marathon
and Mum was impressed with the medal and tried it on. She said to us that she
had considered running the race too but decided not to. Cue a little smile from
my sister and I. This then followed with one of funniest moments we had in a
long time. We were talking about various stars from the 60s and who would we
like to see at a show in Vegas. We talked about Donny Osmond, Bette Midler,
Celine Dion and my sister mentioned Elton John. To our absolute amusement Mum
then announced that she had met him that day as he had been to visit. We were
all laughing as she described where he stood and what he said. It was lovely to
just be giggling again together even though it was over something like Elton!
My sister and I did joke when leaving that one day we will probably find out he
was in fact there (since he only lives down the road in Watford) and the joke
will be on us! A lovely day though and made us feel there would be light at the
end of the tunnel and Mum could still have a nice time with us.
Chapter
12: Happy birthday
On 3rd June it was Mum’s
birthday. My sister and I had bought Mum a few presents and of course came to
visit her loaded with cake and chocolates.
To our delight we arrived to find Mum in a
fantastic mood and she was very happy to see us. We sat with her in the
resident’s lounge and she opened her presents. She was so happy to get some
clothes, jewellery and some moisturizer as well….she even managed to make a
joke that it would get rid of some of her wrinkles which made us laugh. The
cake I had brought with us was indeed a very generous portion but she fed
herself and ate the entire lot.
We played some of her favourite songs
whilst we talked, sang happy birthday to her and took some lovely photos
together including another lovely selfie of the three of us. It felt so special
to be able to have this time together and felt like we were spending the time
with my real Mum.
Talking to the nurses that day they had
said how Mum had been like that all day and had enjoyed ice cream as well. They
had said happy birthday to her and when they asked her what she wanted to wish
for she said that she wished she could be well again.
Even though it pained me and brought a
tear to my eyes it also made me happy that it meant my Mum was still with us.
She still knew who we (and she) was and therefore the possibility of future
days like this were not out of the question.
As much as the day could have gone it was
perfect. I felt content, overwhelmed, happy, sad and relived all in one go.
It was indeed a happy birthday.
Chapter
13: Living doll
As the weeks went on Mum had both good, bad
and horrendous days. The good were when we could sing, dance and chat together.
The bad were when she was a little quiet and withdrawn. The horrendous were
when she would be so agitated that she would be shouting in my face that she
hated me, wanted me dead by tomorrow and that I was a dirty stinking pig. These
harsh words were usually followed by her shouting “get Michael, where’s
Michael” meaning I knew that Mum wasn’t really directing this anger at me but
it was never an easy verbal battering to take.
I learnt to try and ignore it and leave her
be for a few minutes before trying to engage with her again. Sometimes this
worked and others it didn’t. On some visits it was best to just call it a day
and try again on the next visit when it would likely be a different story.
Natalie and I had read about doll therapy.
This was where some dementia sufferers had found comfort in looking after a
doll. It gave them a sense of purpose and helped them stay calm and relaxed in
what must be a scary world for them. Some people seemed to be of the opinion
that we shouldn’t treat fully grown adults like children but we didn’t care. If
having a doll made Mum feel relaxed then that’s what we would do. Her happiness
was our priority and not what others though. We bought her a doll and it seemed
she was attached to it the first few times but she didn’t really keep it with
her as we had hoped. I guess sometimes these types of therapies don’t work but
I certainly would not discourage other families from trying it simply because
it didn’t work in our case.
Mum’s agitation did become less acute as
the weeks went on. Whilst this seemed like a good thing I did also find it a
worry. At one point in the previous year Natalie and I had wanted to move Mum
to live in London with her carer so that she could be even closer to both of
us. We spoke with the Alzheimer’s Society and they had suggested against this
idea. They said that when a patient is moved from their constant environment
they deteriorate very quickly. We of course did not want this and thus had kept
Mum at her home. However; now that she had been forcibly moved I could see the
deterioration happening now.
Because Natalie and I still saw Mum every
week and we rang the hospital every day for an update we could see this change
in behaviour; however for those less able to see her as frequently as us it was
much more difficult. For Mum’s siblings and friends who didn’t live in the area
visiting was an even bigger shock than for us. Even in the space of a couple of
weeks the change in Mum was drastic. She was very withdrawn and quiet and often
sat with her head facing down. It seemed that she was either in pain or just
wanting to be away from the environment she was in. During visits we would still
do our usual of singing songs and playing some of her favourite music and
trying to get her to dance a little but this became even more difficult as the
days went on. We arranged for one of Mum’s friends from Belgium to come and
stay with us and visit and it was a grueling event to witness. I think her
email to Natalie and I says it all:
I was taken aback at seeing my old friend and just couldn’t
imagine how in the 11 months since I last saw her, when we went walking,
chatting, out to dinner, etc, there was such a marked difference. For the first
time in my life, I was tongue-tied. I wanted to say SO much, but no words came.
I sat on the edge of the bed that night full of tears and couldn’t get back
to sleep.
At this point I can see that many families
find it too hard to continue to see their loved one in this way but for Natalie
and I it was not an option to give up. Please understand that I am not saying
any of Mum’s friends or family stopped seeing her. Quite the opposite. I just
mean that I have heard from carers that some families find that distance is the
only answer. For it wasn’t. We arranged for physio for Mum to try and help and
would never miss our weekly visits to Mum. When Mum had been sectioned it did
feel a little like being bereaved. We had gone from being able to speak to her
every day on the phone to then only being able to actually speak to her once we
were at the hospital. It was a strange feeling because people around you at
work were not necessarily aware of how this felt and because Mum was physically
still alive wouldn’t think that you would have feelings of loss even though I
did.
The time came when the doctors decided that
Mum would not be well enough to go home and would need to be moved to a
permanent mental health facility. It was a similar place in terms of number of
patients but felt like a very final move. Our first visit to the new facility
was a tough one. Mum was still very withdrawn and there were a lot of patients
having quite severe outbursts and episodes which was very hard to witness both
as you wanted them not be suffering from whatever anguish they had but also as
I didn’t want it to frighten Mum.
Mum had a very nice room and we filled it
with pictures from our holidays together, her wedding photo as well as others
of the family. Each visit in hindsight there were differences in Mum as she
started to decline in her overall health. She still loved us taking chocolate
each week and after a month or so most visits would be very quiet and involve
just a bit of talking from Natalie or me and some cuddles for Mum. I knew that
she still enjoyed that and she still liked having us there. When we rang the
hospital for daily updates the staff still used to say she would be calling out
for us both. Heartbreaking to hear but again it meant that Mum was still with
us.
Often people would ask whether Mum still
knew who we were and when responding yes they would assume that her illness
wasn’t that advanced and that things must be ok. Until going through this I
would have assumed the same; however as you can see there were many other
issues that the disease caused without us ever reaching the point of Mum
forgetting who her family were. It’s important that you let those around you
understand what stage your loved one is at because as I said it can be
incredibly tough and the more they know and understand the better you will be
able to cope with situation. A brave stiff upper lip is not the answer here!
Chapter
14: Bye Mum
We lost Mum on Sunday 19th
October 2014. She was 65 years old.
The week leading up to Mum’s passing I had
made my usual visit on Monday evening. She had been very quiet but we had a
lovely visit where we sat in her room and had a really long hug and cuddle. I
had some body creams with me and put some on her hands and arms and gave her a
little massage which she enjoyed. We listened to some music and were both very
relaxed. At the time I had no idea that this would be my last visit to her.
Likewise Natalie had a lovely visit to see Mum on Wednesday with Mum even
saying that maybe next time they could go for a walk together. A lovely last
visit for all three of us.
At 7:45am on the day Mum died my phone
started ringing. As soon as I answered and the person on the other end said
they were from Victoria Court hospital I knew it wasn’t good news. I actually
thought she was going to say that Mum had died. She didn’t; but she did say
that Mum had been rushed to hospital about 10 minutes before with a suspected
heart attack. I knew immediately that this was going to be the end given what
the cardiologist had said when Mum was diagnosed with the heart tumour back in
March.
I rang Natalie immediately and said I would
pick her up and we could drive to the hospital to see Mum. The journey there is
a bit of a blur but I do remember having the fear in my head that we may get
there and Mum would have gone. I knew that if we asked at reception for Mum and
they lead us to a private room then we were too late. However; when we got there
they took us to resuscitation and said that Mum was “really not well.” I knew
what this meant from Dad’s illness. We came around the corner to see Mum sat up
in bed with her eyes slightly open and looking really quite distressed.
We went
over to her and within a few minutes of Natalie and I having said hello she did
lie back and seem more relaxed. Her breathing was still very labored but she
definitely knew we were there and I think that gave her comfort.
The next few hours were long but we still
told her some stories and how much we loved her. In the end her breathing
suddenly became extremely shallow and within a few minutes she was gone. In her
final few moments both Natalie and I were naturally very upset and in shock and
I remember the nurse saying for us to keep talking as Mum could hear us. The
last thing I remember saying to Mum was that we would miss her and always talk
about her with her Granddaughter Jessica. I said that Jessica was so lucky to
have a Grandmother like Mum. Then I remember Natalie saying “bye Mum” and
giving her a final kiss and that was it. She was gone.
We were devastated and in so much shock. We
sat with Mum for about an hour to just have some more time with her and we were
also waiting for Mum’s brother to arrive who was making the journey down from
Liverpool. Whilst we waited we actually painted Mum’s nails. I think she would
have liked that?
We hadn’t ever thought that the illness
would come to such an abrupt end. I know that it was the heart tumour that
caused a blood clot on the lung that took Mum from us and not the dementia;
however if she hadn’t had dementia then perhaps she would have been well enough
to have the tumour removed when it was discovered?
We both do know and accept that asking what
ifs and if only play no use and nothing could have been done differently to
change the outcome of that day.
After we left the hospital we went back to
where Mum had been living to collect her things. It was like being there for
the first time and as we saw other people having outbursts we were grateful
that Mum didn’t have to go back there. It wasn’t her and the illness had robbed
her so much of her personality that it would have been awful to see it take her
even more.
For Mum we felt relief that she could now
be without worry or confusion and could be at peace with our Dad again. We know
that will make her happy. It is very difficult for those of us that are left
behind but for Mum it is definitely much better that she no longer has to
suffer. My eyes could leak forever thinking about how much Mum is missing out
on and that her life was cut short by this illness but then I remind myself
that I am lucky to have had her as my mother and that we had each other for 34
years.
We had the below poem read at Mum’s funeral
and I think it gives real closure to the journey Mum had been on.
Don't grieve for me, for now I'm free,
I could not stay another day,
To laugh, to love, to work, to play.
Tasks left undone must stay that way,
I've found that peace at the close of the day.
I could not stay another day,
To laugh, to love, to work, to play.
Tasks left undone must stay that way,
I've found that peace at the close of the day.
If my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss,
Ah yes, these things I too will miss.
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss,
Ah yes, these things I too will miss.
Be not burdened with times of sorrow,
I wish you the sunshine of tomorrow.
My Life's been full, I savoured much,
Good friends, good times, a loved one's touch,
I wish you the sunshine of tomorrow.
My Life's been full, I savoured much,
Good friends, good times, a loved one's touch,
Perhaps my time seemed all too brief,
Don't lengthen it now with undue grief.
Lift up your heart and share with me,
Don't grieve for me, for now I'm free.
Don't lengthen it now with undue grief.
Lift up your heart and share with me,
Don't grieve for me, for now I'm free.
Chapter
14: My Mum
I am aware that most of what I have written
has been about Mum’s illness and I wanted to at least give a little flavour of
her personality. To do that I thought I would just share the eulogy Natalie and
I gave at Mum’s funeral. These are just a few memories of our Mum but we think
it helps capture her personality.
Me: We’d really like to thank you for coming today, to
support Natalie and I and the rest of our family at this difficult and very sad
time.
Natalie: We want to share with you some stories about Mum
that we hope will help you remember forever her wonderful, loving, kind and fun
personality.
Me: It has probably not escaped your attention that today is
the 31st October – Halloween. Mum was not the greatest fan of
Halloween; mainly because it meant that she had to share chocolate or sweets
with the many trick or treaters that landed on the doorstop. As her brothers
and sisters have already said Mum did have a sweet tooth so let’s make sure we
do her proud at the wake later on today and have a Kit Kat with a coffee since
that was her favourite. Mum looked after Natalie and I full time since we were born. She was
always there to ferry us around, help us with homework, watch us in sports day
and even gave it her best shot in the Mum’s egg and spoon race. She made our
childhood a very happy one and marked each birthday with a fantastic cake that
she made herself. When it came to birthday cakes she never refused a challenge
even when the asks from Natalie and I became more complicated. Mum made cakes
in the shape of Doc Marten boots, castles, the seven dwarves and even Barbie
dresses. We will let you decide whose cakes each of those were!
Natalie:
As well as cakes Mum always used to host birthday parties for us through the
years - pass the parcels and musical chairs when we were little and music and
discos when we got older - always a hit with our friends. Mum always had a
talent for craft – creating many embroideries and crochet which will always
remind us of her. One of Mum's favourite pastimes was being Brown Owl at
Brownies in Athens and Brussels organising meetings each week and the pack
holidays. Mum always enjoyed being with the girls and organising many craft
activities and games. I must have caught the bug as I have been a Tawny Owl for
over 10 years now. I still love Brownie enrolments and campfire
songs.
Me: Even
into our adulthood she was always there to support us. Recently one of my
favourite memories of Mum was when she came to watch me in yet another run.
This time it was at London Zoo. The difference being that it was a streak
around the zoo to raise money for Sumatran Tigers. Mum was there in the crowd
with her tiger ears on watching 200 naked people run around the zoo and she
found the whole event hilarious. For months afterwards she kept laughing and
telling everyone about it and it made me smile that she had a new fun memory to
enjoy. Mum was a keen traveller and we shared
some great trips together as a family covering 5 continents. Perhaps it was
Mum’s love of travel that led me into the career that I enjoy today. In Easter
2013 she and I took a trip to Dubai and Abu Dhabi which was so much fun. It was
great to see Mum paddling in the warm sea, swimming in the hotel’s rooftop pool
and of course enjoying some chocolate at a very special Easter Sunday brunch in
the Burj Al Arab hotel. Mum never failed to make me laugh. During the holiday
we were taken to a market that specialized in dates. They explained how they
were grown and gave us a few samples to taste. Mum ate said samples without
hesitation. I probably should say that the ones they gave us were chocolate
covered. Yet when the salesman asked if we wanted to buy any Mum told me that
she didn’t even like dates! I laughed and she said to me “you don’t believe me
do you?” Given she had taken the many samples willingly this time I had to say
no I didn’t!
Natalie:
Mum was always a party animal and had great stamina! Two occasions we remember
were Michael's fundraising event where we all ended up in a nightclub in London
called the Roxy where Mum out danced most of Michael's friends! And my hen do
in Brussels where Mum was amongst the last standing at 5am (note that the main
daytime event was visiting a chocolate factory so Mum wouldn’t have missed that
trip!) Mum was also a big fan of spa breaks - we became regulars at Ragdale
Hall making full use of the swimming, saunas, exercise classes and the massages
- every visit Mum claimed it was the best massage ever! Great times. In 2012 we
went with Mum's 2 sisters too. I was pregnant with Jessica and it was a very
special trip for us all.
Me: Spending time with Mum was always so much fun and we
frequently went to the theatre in London together as well as the odd concert. I
can honestly say that the Cliff Richard and Donny Osmond concerts I went to
with her were hugely enjoyable simply because you could see how much fun she
was having; or maybe was it that she had converted me to a fan of them both? Above
all Mum loved her family more than anything. She liked nothing more than
spending time with her loved ones. At her 60th birthday party she
enjoyed drinks, dancing and laughter with her family and looking at the photos
you can see just how much that meant to her. When her Granddaughter Jessica
arrived in 2012 she was so excited and always used to ask me “how’s the baby”
everytime I rang her or saw her. Seeing Jessica and Nanna Pat enjoy a tea party
together only two weeks before Mum was taken from us was very special and
something we will remember forever.
Natalie: Mum faced a very difficult time since the passing of
our Dad but even though her illness caused moments of confusion and worry her
personality was always there we are eternally grateful for that.
Me: In Mum’s last few hours Natalie and I were there to hold
her hand and we are certain that she knew we were there with her. It gives us
great comfort that we could be together for one last time and that now Mum can
be together again with our Dad in peace. To be the son, daughter and
granddaughter of a woman with such an irresistible personality is an honour and
privilege indeed.
Chapter
15: To test or not to test
In the spring of 2014 there were various
articles that made their way through the media with regards to new tests being
able to predict if a person would develop Alzheimer’s. The tests would be able
to show up to three years prior to a person developing the illness.
Of course this was too late for my Mum as
we were already in the depths of her illness but I was surprised to see some
backlash against these tests with some people commenting that they didn’t think
they were a good idea and what purpose did they serve? As the nation became
more health conscious the average life expectancy was increasing so that now
people could expect to live at least until their 80s which is great. However;
what it does mean is that as we live longer we can expect more people to
develop illnesses like Alzheimer’s which traditionally affect predominantly the
elderly.
For me having been through this illness
with Mum I think taking a test to see if I were to develop the illness is a no
brainer. If I were to find out that I would develop this illness three years
ahead of its onset I would be able to ensure I live fully in the coming years
by travelling to places I have always wanted to see, telling friends and family
stories which may or may not have been shared before as well as planning for my
own care and finances for once the illness takes hold and I am no longer able
to do any of the aforementioned activities.
I am not sure how I would react to
receiving a positive result to the test but I know that I would much rather
have a plan in place for those that essentially will have to watch me and make
decisions about how I am cared for. The illness would affect them (in some ways
much more than me) and anything I could have done to make the progress of the
illness easier on them can only be a good thing.
Perhaps I will be wuss when it comes down
to having the test but given that I need to have regular checks for my prostate
and heart due to family illness why not add another one to the list. After all;
the key to beating many serious illnesses is often early diagnosis so surely a
test to start treating Alzheimer’s early can only benefit the patient and those
around them?
Epilogue:
My advice
The reason I wanted to write this was
because there was no literature I could find that spoke about the things my Mum
and my family were going through. Someone somewhere in the world develops
Alzheimer’s every six seconds. Perhaps you are going through the same as you
read this or are apprehensive about what is coming up in the future.
Regardless of the situation my advice is
simple. Take each day at time and know in your heart that the person you love
is still there. Even on the bad days.
I hope that helps.
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