5 April 2013
Social Services phoned me this morning. They asked if
putting mum into a Residential Care Home was an "emergency". I said
we lived in a permanent state of "emergency" with mother. I explained
the situation and suggested they contact mum's GP, Hospice Care Nurse,
Geriatric Consultant, Community Psychiatric Nurse and Community Nurse for a
more objective and professional assessment of mum. I also told them that the Government ought to
be grateful to us for putting her into a home. It is going to save the National
Health Service a fortune in false call-out for out-of-hours doctors. It would
also save the cost of all the medication mother currently flushes down the
toilet.
7 April 2013
The nurse visits every three days to put on the morphine
patch. When the nurse has gone, mum takes it off. She then puts another patch
on 3 days later before the nurse comes back. I have reported mum to the Hospice
Care team.
8 April 2013
Today mum complained about the photograph I took of her and
her great grandson. She is cross because
I have “cut her down”. The little boy sitting on her knee has up-staged her. He
has a more prominent place in the photo than she has.
9 April 2013
Still no news from Social Services about having mum “put
away”. Mum is disappointed that she can’t move NOW.
10 April 2013.
Very frosty reception from mum. She is not going to go out
to coffee today in retaliation for me not visiting her often enough. The fact that I take her out for coffee at
least twice a week and I have visited her every day for the past 4 days, is not
good enough. She is on strike. No coffee today, nor tomorrow nor the day after.
A classic case of cutting off your nose to spite your face. Still, at least it
gives me some respite!
14 April 2013
Mum has butchered the nice photo I’d given her of her and
her great grandson. Because I had ”cut her down”, she has now cut herself out
of the photograph. Is this a form of harming?
If I wasn’t so drained by her, I would give it some thought.
15 April 2013
For a change I thought I would take mum further afield for coffee.
She likes trying new places so we went to a farm shop out in the country 10
miles away. I was flabbergasted when we walked in. Mum was greeted like a lost friend,
“Hello, how are you? We’ve not seen you for a while”. Apparently, when dad was
a alive they used to come all the way out here just to buy eggs!
Met with mum’s social worker He couldn’t have been nicer or more
supportive. I gave him a potted account of mum’s physical, medical, emotional,
mental and psychological history. He thought she was an ideal candidate for a
Care Home. He is going to visit mum to assess her himself.
18 April 2013
10am. Took mum out for coffee to rehearse what to say today
when the Social Worker comes to visit. We had a bit of an argument about
getting her a new nightie. I had recently spent a whole morning with her buying
a new nightie and I wasn’t going to do it again and told her she’d have to get
used to the one I’d bought her. Anyway, it turned out she hadn’t said “nightie”
at all, but had made a comment about being “ninety”. She really must stop
mumbling.
2pm. Met with the Social Worker. Mum had completely
forgotten what we had agreed this morning. Likewise had completely forgotten
what town she lived in, the date and the day of the week. At this point, mum
decided to side track and got out all the paintings she’d done to prove that
she wasn’t going off her head. The
Social Worker wasn’t going to be side tracked and asked her to remember the
words “apple, chair and penny”. He then asked her to take 7 from 100. She said
“93”. He then asked her to repeat the three words he’d just given her. Blank.
Tears started. Then he asked her to take
7 from 93. She said “seventy something”. She kept looking at me for
confirmation. I just stared back.
Sensing she’d got it wrong - more tears and then she said she was no
good at sums, her husband did it all and that he was the Chief Accountant for
NatWest Bank. I explained to the Social Worker that my father had never been a
Chief Accountant for any bank. Mother
went ballistic! She ranted and raged about how I was always contradicting her, that
I was controlling and that I am trying to have her put away into a mental
hospital. I asked her when it was dad worked for NatWest because he worked for a
lighting firm in Bodmin before he retired; before that at a butchers in
Wadebridge; Benfix in Slough; Mars in Slough; the London Electricity Board and
before that a booking clerk on the railways.
At this point the
Social Worker broke in and asked about her mood swings. (He’s a brave man!)
What mood swings? More disagreement over
“mood swings”. Then she started ranting
about the House Manager. The House manager who’d upset her 2 weeks ago. I
explained that this incident happened before Christmas and that the House
Manager was on compassionate leave because her father had died when this alleged
incident happened. More shouting and raving from mother about me contradicting
her.
To calm things down, the Social Worker asked about what sort
of “Retirement” home she would like to live in. Mum said she liked the place
where she and dad lived before he died. Everyone was friendly, they had activities,
they played cards and bingo and had outings. Again, I had to explain that it
was nothing like that. It wasn’t a retirement home. She hated it there because
she never saw anyone and there were no activities. I think if she could have slapped me then and
there, she would have. But I think it gave the Social Worker a fair idea of
what mother is like.
The Social Worker says he was going to complete the
application form and put it before the funding panel next Monday for consideration.
We should have their decision next Wednesday. Mum is going to have a formal
assessment on 29th April.
I spoke to House Manager on the way out. She said that people
need to give two months’ notice if they move, but only one month’s notice if they
die.
19 April 2013
Mum isn’t talking to me and refused my offer to take her to the
supermarket to buy a bottle of brandy. But this also meant that she wasn’t able
to buy any washing powder. Washing powder? Yes, she is still refusing to hand
over her dirty washing to the staff for the washing machine. She is still insists
on doing all her own washing (sheets and all) in the bathroom sink.
21 April 2013
10:40. Phone call from mum’s House Manager. Mum was having
trouble breathing and they have called for an ambulance. Could I be there when
the ambulance arrived?
Rushed over to mum’s. As I arrived they were putting mum into the
back of an ambulance. I could hear her screaming, “I don’t want him here. Don’t
let him near me”. So much for shortness
of breath! I guess she is still cross with me for contradicting her last week.
The paramedics did various tests in the ambulance and then
one of them came over to me. “Is there something mentally wrong with your
mother? One minute she was a sweet old lady and then she suddenly flipped into a
horrendous monster who accused us of accusing her of wasting our time. We think
she has a chest infection and needs to see a doctor, but she is refusing to go
to the hospital. Can you sign this disclaimer form, please?”
I signed the form, absolving them for any consequences of
mum’s action. They were a bit disgruntled, because mum really had wasted their
time.
Back home. Just sat down to Sunday lunch when the House
Manager telephoned me again. Mother has pulled the emergency cord yet again and
an ambulance was on its way. Could I go over?
When I arrived it was the same emergency crew who’d been
there two hours earlier. This time
mother had called them out because she couldn’t breathe and she couldn’t get
her tracheotomy tube into her neck. They
couldn’t help. They’d never dealt with a tracheotomy before and didn’t know
what to do. I suggested perhaps they could give her a lethal injection of
something – I’d make it worth their while. He was sympathetic but said I should
call an out of hours doctor.
As a thank you for their help, I took the ambulance crew
down to the kitchen; made them a pot of tea and let them finish off the
chocolate cake the chef had made for someone’s birthday yesterday.
Said goodbye to the paramedics and then phoned the out of hours
doctor. No one could come for another hour, so I went home to finish my Sunday
lunch.
Just got my lunch out of the microwave when the House
Manager phoned. Two doctors had arrived. Could I go over there and speak to
them.
When I arrived mum was all bright and breezy and telling
them stories about her husband being the Chief Accountant for NatWest Bank and
how she’d worked for Marks & Spenser.
She was avoiding all questions about her health. So I gave them a potted
history of mum’s mental, emotional and physical health – much to mum’s
annoyance. “He’s only saying that because he wants to put me away in a mental
home” she cried. They wanted to know what medication she was on. I explained
there was a difference between what had been prescribed and what she took.
“Don’t listen to him,” she said, pointing a bony finger at me, “I take all my
pills. He just wants to have me put away in a mental home.”
Mum was obviously in a very confused state: very muddily.
She had forgotten how to put in her tracheotomy tubes. She was trying to put
them in upside down. She was also very unsteady on her feet.
For some reason, she’d taken all the lace ties off her
tracheotomy tubes so there was nothing to keep them in place. This produced the unusual spectacle of, when
ever she spoke; the tube flew out of her neck and across the room. When we looked
closely, there were tracheotomy tubes all over the floor.
The doctors went outside to confer and make some phone
calls. 15 minutes later they came back in and said that under no circumstances
was mum to be left alone and that they had arranged a place for mum at the Hospice.
Unfortunately, the ambulance wouldn’t arrive for another hour. Could I take her
there in the car? I didn’t want to
inflict mum on those paramedics for the third time and I certainly didn’t want
to be alone with mum for another hour, so I said I’d take her. At this point
the House Jungle Drums had been at work and a lady from upstairs came in to
find out what was going on so that she could tell everyone. Thanked her for her
interest but explained we needed to get to the Hospice. She was disappointed
that she had no news, but cheered up at the word “Hospice”. She would have
something worth passing round to the other residents.
All the way to the hospice, mum kept asking me if she were
going to die. I couldn’t answer that. But what really flabbergasted me was mum
saying, “I’ve been a right cow, haven’t I?” Death certainly focuses the mind.
If you get the opportunity, die in a Hospice. The staff, the
ambience, everything, was so positive and live affirming. I can’t speak highly
enough of them. I left mum in their capable hands together with a clean nightie
and set of underwear.
22 April 2013
Spoke to mum’s Community Nurse to tell her not to come today
with the morphine patches because mum was in the Hospice. We agreed that mum
would need permanent care so I wrote a letter to the House Manager to say that
mum would be moving out into Residential Care.
At the hospice mum was still very confused. When I arrived,
she was telling the lady in the bed opposite how her youngest daughter owned 8
houses! She didn’t like it when I tried to correct her. She was adamant: my
sister owned 8 houses. I suppose it’s possible that I have another youngest
sister and that my mother had an affair with some millionaire (like my
grandmother did) and that their love-child is a property millionaire somewhere,
but I doubt it.
The discharge manager came to speak to me about mum’s future
care needs. I explained about the social worker who came to assess mum last
week. “What social worker?” said mum. “He never tells me anything. He’s going
to have me put into a mental home.” The
discharge manager said that mum couldn’t go back home, she now needed
specialist care. The good news is that she is willing to help to find that
right place to provide that specialist care. I am meeting her again Tuesday
morning 11am.
Then a lady doctor came to see mum and asked what the
problem was. Mum just said she didn’t feel well. I had to keep prompting her about
her pain, her not sleeping and her not taking her medication. Mum got more and
more worked up, “He’s only saying that because he wants to have my put into a
mental home”, she said.
At this point my mobile phone rang. I excused myself and
went out into the open plan communal area. It was one of those annoying phone
calls about dad’s car accident three years ago and they would like to help sue someone
for compensation. I get these calls about dad’s accident all the time. I explained
that this was nothing to do with me. The guy was so rude and pushy that I asked
to speak to his supervisor. He said he was the supervisor! I said in a loud voice, “Write this down,
this accident relates to a Horace Napper. Horace Napper is DEAD. He has snuffed
it. He has fallen off his perch. He is deceased. The grim reaper has taken him.
So stop phoning me!” I then remembered
where I was: in the central communal area of a hospice. Oops.
Went back to mum. The doctor saw me coming and came to meet
me. “Could I have a private word with you please,” she said. Wondering about the consequences of my, “grim
reaper” comment, she took me to a private room. “Has your mother ever been
diagnosed with paranoia?” she asked. At last! A medical person who recognised
what I’ve known for 60 years plus! Over a cup of coffee and a plate of biscuits
I was able to give a complete and full account of mum’s mental state.
When I got back to mum, she’d spilt a large jug of water
everywhere. When she saw me, she promptly spilt a large mug of coffee over
herself. (I have that effect on people.) I had to go into Exeter to buy her a new
pair of slippers, hers were so wet. I
offered to take her nightie home to wash, but the staff do all the washing
there. I was very impressed. You also get free parking.
As I was leaving mum said, “If I die in the night, make sure
you take my tracheotomy tubes – they’re worth a lot of money.” Yes, I thought, just like that dishwasher
proof Korean antique vase you keep telling be about on the window sill.
23 April 2013
Shocked by mum’s appearance.
She had gone downhill fast in the past 24 hours. She was sitting in her
chair with a drawing pad, happily drawing away. But there was no pencil in her
hand except the imaginary one she thought she was holding. The nurse told me
that mum was unable to wash or dress herself this morning. She had tried
washing but had dropped her flannel on the floor. However, she had continued to
wash as if she were still holding a flannel, even rinsing out the imaginarily
flannel. Mum had not noticed that in the process, she had badly scratched her
upper arms. She was unable to put her night dress on. She couldn’t even put her
glasses on straight. She is very confused and knows that she is confused. This all
added to her distress. I’ve had my battles with mum, but I felt so sad, so very
sorry for her. The discharge nurse took me to one of their quiet rooms and gave
me the opportunity to use up a box of tissues on my tears.
Mum’s condition is now way beyond what Social Services or
the Council can provide help with. A Care Home is no longer an option. Because
mum is now in a hospice, they say they are going to fast track funding in order
to get her into a Nursing Home, where she can have the 24 hours medical care
she needs.
They have given mum some modern plastic tracheotomy tubes.
The nurse handed over to me all of mum’s silver tracheotomy tubes a large glass
jar. It felt like when someone dies and
they hand over their jewellery. I found it a very painful experience. When my dad
died, it was sudden and a shock. He died without me being there and without me
saying goodbye. With mum, I feel that I have begun a journey that I am both
dreading and wishing were over.
The Hospice asked me to bring in some day clothes for mum and
some toiletries so I went back to mum’s. It was strange rifling through your mother’s
bras! Amongst her underwear I found mementos of my sisters. Mum had been so
horrible to my sisters over the years, yet she had kept these reminders of
them; things like my youngest sister’s school bible. I had to stop. It was too
painful. Decided to sort out her fridge. Found the brandy. Had a stiff drink.
For the past couple of months mum and I have scoured every
charity shop in a 10 mile radius looking for a doll she could dress. Blow me if
I didn’t find one in the bottom her wardrobe! Typical mum!
I decided to start making plans. Contacted my sisters to
prepare them for the worst. When the time comes, how would they like to be
told? A phone call any time day or night? Should I tell them when the end is
near? Should I leave a message on an answer phone? Phone a mobile/ cell phone? Make an announcement on Facebook?
I love and miss my sisters and so wish they were here with me now.
24 April 2013
Again, mum’s condition has deteriorated. She is finding it
difficult to use her right hand and her speech is slurred. I asked the doctor
if she’d had a stroke. That is one possibility, but they will know more when
they have done a brain scan. Another possibility is a brain tumour because the
cancer has spread. She also said, “Your mother is suffering from, what I think
you may have known for a long time, dementia. Why no one has picked this up
before I don’t know.” They have complained to the Geriatric Clinic for not
diagnosing this. They have also booked mum in for a visit from a psychiatrist.
(That’s something else we’ve thought for years ought to have happened!)
I took with me a photograph of dad for her to have with her.
She obviously recognised who it was, but there didn’t seem to be any emotional
response. I was expecting her to hold onto it. Have a cry. But she just said,
“Put it over there on the locker” and carried on talking as if I hadn’t given
it to her.
Remember the story about how, when she was in the Hospice
Day Centre, she’d cut off the trouser leg of the male member of staff instead
of just taking the hem up? Well today he got his revenge. He gave her a bath.
Mum was so embarrassed! Being bathed by a man!
Went back to Mum’s flat to continue to sort her things out.
Would you believe it, I found a bag of plastic tubing for mum’s tracheotomy
sucking machine tubing. Plastic tubing that she has been making me order
because she said she didn’t have any. Then I found a bag of the bibs used to
cover the tracheotomy hole in her throat. Bibs that she denied having and made
me order more!
The Hospice phoned me to say that they were transferring mum
to the main hospital for x-ray, psychiatric assessment and other tests. The
concern is that the Hospice will no longer be responsible for mum’s discharge,
and that I will have to deal with a new set of social workers who will not have
the same level of resources or influence as the Hospice.
26 April 2013
It is very worrying when you ask a doctor for the results of
a test and he says, “What have they told you?” What is it that they haven’t
told me? Anyway, it is definite, mum has had a stroke. It’s not your normal
stoke that 98% of stroke victims have but a severer stroke that the other 2%
have. They couldn’t rule out that she wouldn’t have another stroke or something
worse.
It was quite frustrating because the staff on this ward had
no “history” of mum. Why was she in the Hospice? Why couldn’t she go home? So,
I had to go over the whole story three more times with three different members
of staff. I explained that they have nowhere to send her and they have to find
somewhere. They kept saying that she was medically fit to leave the ward. I
kept telling them she was demented, still suffering from a severe stroke and
still in “gruesome” pain. (I’ve heard that word so often, I find myself using it
all the time. “Gruesome” – it has a nice ring about it.) I kept telling them
that mum was not fit to leave! What they were really saying was that they
couldn’t do anything more for mum and they needed the bed. They tried phoning
the Hospice to take mum back, but they’d already given mum’s bed to someone
else. So, next stop is Rehab or the Stroke Ward.
Meanwhile, mum was having a coughing fit. I went in to see
her cough her tracheotomy tube across the floor and past the half eaten
sandwich which was under her bed. She retrieved it, sucked it to get any dirt off and tried to
put it back in her throat. She failed and passed it to me saying, “Here, put
this in for me.” I promptly called a nurse, who seemed at a loss to know what
to do. (Note, mum is in the Respiratory Ward!) Mum was now coughing up scabs
with blood in. I told the nurse that mum needed a sucking machine to clear her
lungs. Nurse didn’t know what I was talking about. But then I remembered there
was a socket on the wall that could be used for sucking out people’s lungs. It
just needed some plastic tubing. “What size tubing?” she asked me. “I don’t
know”, I said, “I’m not a plumber.” Thinking about it, I'm not sure she was a
nurse. I get confused with all their different coloured uniforms.
Because of mum’s condition they have put mum close to the
nurses’ station. Looking up, mum gave a sudden start and called out,
"What's that black woman doing?" It was a coloured member of staff!
Mum is still muddily, and knows that she is muddily. She is
fearful that she is losing her mind. I explained that she’d had a stroke and
that makes people muddily. I hadn’t the heart to tell her that she really was
losing her mind - to dementia. I reassured her that if there were still mental
hospitals, I would have put her in one years ago.
27 April 2013
Not much change today. I got a wheel chair and took her down
to the café for a change of scenery. I tried to get her to do a video clip for
my sisters.
Mum: The House Manager,
Irene, Diane and the other one.
Me: Start with
the oldest and see if you can remember.
Mum: The House Manager,
Irene, Diane and the other one.
Me: No, we need names.
Give me the names of your four children,
Mum: The House Manager,
Irene, Diane and the other one.
Me: No, we need
names. Do you have any sons?
Mum: The House Manager, Irene,
Diane and the other one.
Me: No, The House Manager is not one of your children and there is
no “other one”. It’s me! Your only son!
For my own sanity I have tried to see the humourous side of
life with mother, but the truth is, I have been diagnosed with depression. It’s
been coming on for a while. When I spoke to the social worker about mum going
into a home, he asked about me and then said, “You’re depressed, you need to
see your GP”. When I spoke to the discharge nurse at the Hospice, she also
asked about me. She also said, “You’re depressed, you need to see your GP”. So
I went to see my doctor. When he got his score card out and asked me the questions,
I scored 10 out of 10 for depression. It’s taken me two days to be able to tell
people. I’ve always been such a positive, optimistic sort of person. The doctor
offered me counselling to find out the reason or have medication. I said I knew
the reason! Mother! So, I’m on medication. This should see me through the
battles ahead about getting mum into a Nursing Home. This is now chemical
warfare!
28 April 2013
Not much change today. Took mum back to the hospital café
and showed her a video message from my sister who’d just bought a new caravan.
The whole way through mum kept saying, “Hasn’t she lost weight. Hasn’t she lost
weight.” Or “Isn’t her hair nice.” At the end of the video I said, “Yes, but
what do you think of the caravan?” She said, “Oh, your father and me had one
just like it, only ours wasn’t a trailer, you could drive ours.” More false
memory syndrome.
30 April 2013
Words can't express how frustrating it is dealing with the
hospital. Mum is on the Stroke Ward and they want to send her home! They have
already phoned mum’s House Manager. I am very cross. There has been no liaison
with the Hospice nor the Critical Care Team who both agree that mum must not be
on her own and should not go home. I have made an appointment with the
Occupational Therapist for tomorrow afternoon.
Mum enjoyed the video that my youngest sister had sent.
Although she spent most of the time saying, "Doesn't see look like your
dad’s sister Vera.” Or “Vera had that colour hair."
Mum’s gruesome pains in her legs seem to be a figment of her
imagination and the result of dementia, because no one can find anything wrong
with her!
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