Wednesday 27 August 2008
By Mike on Wednesday 27 August 2008, 15:01
I received a call from Rachel at 8:30 this morning, to say that the retirement
village had called her with the news that dad had gone into renal
failure.
Rachel sounded upset, and was getting ready to go over to see dad straight
away. I resolved to do the same thing, and we arrived there about the same
time. Dad was flat on his back in bed, his bed extension was in place. He was
slightly restless, not much. And he showed almost no signs of recognition when
we spoke to him and announced that we were there.
Over the next 90 minutes, we watched him. His breathing pattern has shifted
somewhat - for the worse, I think. He is breathing maybe 9 to 15 times and then
not breathing for 45 seconds. Towards the end of this spell he often started to
raise his arms high off the bed, as if to get something off his chest, as if he
felt his lungs were being compressed. The staff and nurses kept popping in
every 10 minutes or so, to give him some liquid, move him, leave things for
him, and so on. One thing that absolutely amazed me was when two of the
retirement village staff came in and moved dad. They were so gentle and soft
with him, one even kissing him before they left. It was touching.
Meanwhile, Rachel and I could do nothing. We talked to dad and patted him on
the shoulder, but there was barely any sign that he knows we are there. One eye
is shut and the other is open just a fraction, but not over the pupil.We didn't
get a single coherent word out of him all the time we were there. He seems to
be going, but he's recovered before. And we don't know how long any of this is
going to take.
I left first and went to see mum, but she was having lunch and I therefore
decided not to disturb her. I drove over to the house and checked progress:
very little. Rachel then turned up too. I answered a call from Greg and filled
him in on the day. He is out of town today, and wanted to hear what the doctor
has got to say. Then, finally, I collected the mail from the mailbox and drove
home. It was after 2 pm when I got here.
The funny thing is that I feel completely resolved about all this. Dad is
dying, and I am reconciled to it. In fact, now when I look back I feel that
this blog has served over the last two years for me to air all my thoughts and
feelings about mum and dad, their lives and their imminent deaths. It is not as
if death now is a surprise, since it is inevitable in any case, cannot be too
far off for either of them, and we pretty much knew that it is not Alzheimers
disease that kills people, but the concomitant conditions brought on by
forgetting how to do one thing after another, until even the basics are beyond
the sufferer, and losing the power of recognition and therefore the ability to
react or respond correctly to the world around them - leading to accidents,
sedentary lifestyles, poor diet, poor hygiene, and a host of other problems
that we have been trying to mitigate. So, this current situation was to be
expected at one level and, at one level, I expected it. The fact that is has
been a particular sequence of events starting in May with dad, leading to two
stays at the hospital and two big drops, now possibly a third, in capability,
was the unpredictable part, but that is now with us, and no longer requires a
preamble. I hope Greg and Rachel feel the same way, but I suspect not. I wonder
how Derek feels, so far away from all this and hearing only our second-hand
reports.
I took a photograph of dad today, lying in bed, looking very thin, mouth agape.
I was thinking that it may be the last living photograph we have of him. I must
remember to take others each time I visit.
Sunday 24 August 2008
By Mike on Sunday 24 August 2008, 00:36
Busy on Wednesday, I postponed my visit to see dad until Thursday. The drive
takes about 40 minutes to an hour, so I always hope that there is going to be
some reason for the visit to be prolonged more than a few minutes, otherwise
the journey seems excessive. I aimed to get to the retirement village at 4 pm.
I walked in and was pleased to see dad sitting in the common room, dressed in a
bright red flannel shirt and looking relatively normal compared to the others
around him. There was evidence that he had wet himself, and that the nappy that
all the residents wear was leaking a bit. He recognised me and immediately said
hello, and then, 'I want to get out of this place.' I couldn't look him in the
eye. I said 'you are going to have to get a bit better first, dad.' He didn't
understand this. I made a bit of smalltalk, asking him how he was, and so on. I
asked him about the walking frame in front of him, whether it was his, despite
the fact that I could see it was labelled with his name. A few minutes later he
asked to be taken out of there again. And again, I had to look away, knowing as
I did so that my aversion to the question was something he might sense even if
he cannot see or hear properly. I had been thinking of bringing mum in to see
him, partly because of the possibility that it might be her last chance, and
partly because it would undoubtedly be motivating for dad. Now, even though dad
is recovering well and things are looking a lot better for him, it seemed the
best thing to do to keep his mind off getting out.
'I'll bring mum in to see you in a few minutes, dad.'
'Is she here?'
'Yes. Just next door. Sit here and I'll go and bring her to you.'
On the way out I caught the eye of a member of staff. I told her that I was
going next door to get my mother and that perhaps it would be good if a seat
were placed next to my dad so that she could sit there.
Mum was taking part in a sing-song ('Wonderful, Wonderful Copenhagen') but when
she saw me she got up and left the group. She came over for a hug, and I walked
her out of her area, into dad's next door. She was already getting nervous as
we approached the door. Once inside she became more apprehensive. The people in
dad's area are a bit louder and apparently less docile. It has not as relaxed
an atmosphere as mum's area.
As we entered dad's common room I saw that a chair had been placed next to him,
but that a woman was just about to occupy it. She had barely begun to bend into
it when another woman stepped forward and stopped her. 'Oh, good,' I though,
'they've been told not to sit there.' But as I watched, slowly walking mum
towards it, the other woman sat down in it herself. When mum and I got over to
dad, he recognised her and reached both arms up towards her. Mum stepped
forward and bent down, putting her arms out to dad. In slow motion, they closed
in on each other and dad kissed mum on the cheek. Then, the effort of leaning
forward having tired him, dad sat back and they held hands, mum leaning over
dad awkwardly. I turned to the woman who had sat down next to dad, and
said:
'Would you mind letting my mother have that chair so that she can sit next to
her husband?'
'No, I'm not going to do that,' she replied.
Well, I know there is no point trying to reason with people with dementia, once
they have their mind set on something, but as mum and I stood there, this woman
appeared to become irritated with us taking her space.
'You know, it really would be much easier if you just let my mother sit there,'
I said.
'No, I'm not going to do that,' she repeated.
I was irritated, to say the least. I turned mum and led her to two adjacent
empty chairs on the far side of the room. I sat her down and tried to calm her
- saying that she should just stay there for a few minutes and I would bring
dad over. Already, she seemed to be losing the sense of what I was saying, and
was wringing her hands. I went back to dad and urged him up out of his chair,
and got his weight over the walker. He is able to push it forward, but his
steering is not that good. I had to keep wrenching it to the side while at the
same time supporting a lot of his weight. We negotiated our way through the
sprawled legs and discarded walkers and soon reached mum. I turned dad around
and got him to fold his frame and settle into the chair. But, he just slumped
right down, completely exhausted, and wouldn't open his eyes. I tried to get
him to sit up, even bodily lifting him, at which point the member of staff
reappeard to tell me that was all wrong.
We managed to get dad into a half sitting, half slumped position, but his eyes
were closed.
'Open your eyes, dad. Mum is here and she will be going in a few minutes.' But
dad was out of it, and now mum was getting quite distraught, apparently afraid
of dad. Dad had been sitting on a cushion to either absorb urine or ease the
pressure on his bones, but even though I went back to get it, I couldn't get it
under him. The first need then became getting mum out of there before she
really got upset. I walked her back next door. As I went through the gate, a
wild-eyed woman was shouting 'someone's fallen over in the street.' At first, I
put this down to demented delusion, but then I saw down at the far end of the
facility a door was open and what looked like a body was slumped on the floor
inside. I left mum and went down to see what was wrong. A lady had fallen over
after using the toilet, and was being helped to her feet by two old men. It
looked very much as if the three of them were going to fall over again,
together this time. I pulled the lady's pants up, and positioned her with her
hands on the basin, and the two men holding her at the elbows. I went back to
the desk and told the staff what had happened. They both just looked at me as
if I had said, 'the sky is blue'.
The next time I looked at mum she was miles away, and had apparently forgotten
I was there. So, I left. I'd planned on being there for maybe an hour, but it
was all over in less than 20 minutes.
Result: dad exhausted, mum distraught, me frustrated.
Monday 18 August 2008
By Mike on Monday 18 August 2008, 21:14
I went see dad, and mum, today.
As I arrived, dad was just being put to bed. He'd been up and sitting in the
common room, had been able to support his own weight on a frame, and had been
eating a bit more too. One of the staff told me that he had heard dad say
several words clearly. Everyone agrees that dad has improved.
And now perhaps a pattern has emerged.
Each time dad has been to the hospital his condition has worsened
substantially. Each time he has been discharged, he has suddenly started to
recover. Even if I had not already lost all regard for the hospital, I would be
wondering about this. I now think that the hospital is the worse place for dad,
unless he has an emergency. From what I have seen and heard of their treatment,
it is harsh, aggressive, and not adapted to dementia patients. The drugs are
administered automatically. The cot sides are put on beds, despite the fact
that dementia patients try to climb through them, get stuck and strip their
skin trying to get out, or fall over while part of their body is sticking
through the bars and break their bones. The casual meals, the scant bedding,
the disregard of cries for help and inarticulate vocalisations all add up to a
dangerous, alarming and inimical environement. The discharge papers showed that
the hospital staff could not find any reason why dad was so dopy. They fixed
the chest infection which was a consequence of his congestive cardiac failure,
and noted that his frontal and temporal lobes are atrophied, but had nothing
more to suggest.
Greg and I had a 90-minute meeting with the manager of the facility which looks
after both mum and dad. We shared our view of the hospital and, surprisingly,
it found sympathetic ears. We have now agreed with the manager that if dad's
condition begins to fail, she should just make arrangements to make him as
comfortable as possible where he is, rather than send him to hospital. The
hospital cares nothing for comfort, it simply works in problem-solving mode.
General systems decay, which is what dad appears to be suffering from, cannot
be solved. It therefore lies outside the hospital's area. They have no interest
in old-age care, and so dad is better off staying where he is. The manager is
happy with this and feels that although he is almost certainly a nursing home
case, there are no beds available right now, and so arrangements are being made
to keep dad: a bed extension has been ordered (he's too tall for the bed when
the back is raised), the staff are turning him over every two hours. He is
receiving physiotherapy. I am actually very happy with what is being done here
now.
Apparently, old people who enter this end-phase of general systems failure can
remain in the state for several years, or simply die in their sleep within
weeks. We therefore have no reliable estimate of how long dad has.
I sat in dad's room for quite a long time today, occasionally speaking to him,
occasionally getting a groan or mumble in reply. To pass the time I began
counting dad's breaths. He breathes quite heavily for 16 -17 breaths, then
stops breathing for 26-31 seconds. This cycle just repeats over and over again.
It is quite regular. He was eating very little, and what food he did eat seemed
to be a labour for him. I am inclined to say that if he doesn't want food, we
should just not push it on him. If he starts to die through the inevitable
malnutrition, so be it. It was rather painful watching him grimace and moan as
food was pushed into his mouth this evening. He spat a lot of it out.
I went to see mum. She was well dressed in a blue dress and beige cardigan, and
was standing with some other women. She recognised me and we just walked around
the facility together. She seemed to be in quite good spirits. Later, the staff
brought out cheese and ham sandwiches and mugs off milky tea. Mum was very
interested in this, so I sat her down at one of the tables and the staff gave
her what she wanted. While whe focussed on her sandwich, I quietly slipped out.
I'd spent nearly three hours there altogether today, the longest ever for me.
It was a relatively reassuring visit.
Sunday 17 August 2008
By Mike on Sunday 17 August 2008, 01:15
Finally, after being warned off by norovirus, and a day spent waiting for the
message from the hospital that never came, I saw dad. Rachel, Greg and I had
agreed to meet at the village at 2 pm. I saw Rachel's car ahead of me as I
drove down the street beside the retirement village, and we met in the car
park.
I was keen to go straight in to see dad, but we talked for quite a while at the
office. What struck me about this conversation was that when I asked whether
dad was better or worse than when he went into hospital, I was told that he was
the same. 'So, there was no incident of unconsciousness, or him falling out of
his chair?' I asked. 'Oh, I tell a lie. Yes, there was that. Twice on the day we called for the
ambulance I found him flat on his back on the floor beside his chair.' So, I
felt I just had to see for myself.
Dad was in bed, with the oxygen tubes in his nostrils. The nurse was just
raising his feet a little. Dad was weak, incoherent, and uncoordinated. He
looked for all the world like a baby, unable to control his limbs, restless,
making sounds, not words, and completely helpless. The nurse pointed out some
juice that had been left for dad, then left. Rachel came in a minute
later.
We tried talking to dad, but there was little sign that he was able to
understand, although he clearly knew we were there. Soon, Greg turned up. We
interpreted dad's restlessness as physical discomfort, so we tried raising him
up the bed, straightening his legs, raising and lowering the sheet. Nothing
really seemed to make any difference. His legs are going oedematic, so they are
swollen and dark, and must be uncomfortable.
Here is the situation:
Dad's heart is failing. It is enlarged, and pumping poorly, which is why his
blood pressure is all over the scale.
His brain is either deteriorating badly or is starved of oxygen, so he cannot
help himself, cannot speak, cannot feed himself or support himself.
His lungs are filling with fluid, and his breathing is rather laboured, with
pauses for quite long spells, then starts up again.
All in all, a pretty serious combination: cardiac, cognitive, and respiratory
failure.
The people at the hospital don't think he is ill enough to stay there, or
cannot be treated. The people at the hostel think he is too ill to stay there,
and cannot be given the level of care he needs. Somewhere in between the two
there must be another place for him - presumably the nursing home. The hostel
is looking after him for a short time, probably until monday. At that time they
will, if he has not rallied, almost certainly send him to the nursing
home.
We shall see what they decide. Dad clearly needs a higher level of care now,
and whether this is available at the nursing home, or requires a full-time
personal nurse, we do not yet know.
We put the friction of the past week completely behind us. I also wanted to
avoid any talk about what had happened or who was to blame, and focus purely on
one subject: what do we do now?
Having someone in the room who appears to be very close to dying changes
everything. You can't make jokes, you can't talk about a quick end, a merciful
release, or anything like that. All you can do is talk to the person and tell
them that you are there to look after them. Dad seemed to want this. At one
time I moved my hand near his and I saw his move to meet mine - so I just put
mine over his, on the sheet. I looked at the two hands together - clearly of
the same stock, one much older and more swollen than the other.
Outside in the carpark we wondered whether we could have done any better. I
don't think we had any better solutions, really. When we moved dad into the
village we really thought that he would take to it as well as he had taken to
day care. In fact, we sometimes described it as 'day care every day' and dad
seemed to be looking forward to it.
The odd thing was that Greg said that when he was alone with dad this week he
had tried to think of good times they had spent together and just couldn't
think of much. It's the same for me. Dad didn't show a lot of interest in any
of us, but I didn't feel I was missing anything at the time and do not feel
deprived now. In fact, I was rather proud of my father, and still am. It
surprises me when my siblings seem to feel a kind of resentment towards dad. I
never felt anything like that, but I appear to be the only one.
We all went next door to see mum. She had just eaten some cake, as it was
somebody's birthday today, and was very pleased to see us. We 'chatted' with
her. She was alert and seeing things taking place around the room. The contrast
between her and dad was incredibly graphic. Ultimately, mum got teary, and I
noticed that she seemed to be suffering from tactile hallucinations again -
trying to get rid of 'something' on her hand.
Later in the afternoon, I went back to the house. The builders have already
started. An enormous wardrobe in the smallest bedroom has been demolished and
piled outside. The carpet has been removed and the floorboards are bare. The
last remaining curtain has been torn down. Somehow this seems like an
improvement. The carpet was a palimsest on which all the spills and accidents
of our parents final days were written. The stains had sunk right through in
some places and left marks on the floorboards below. I predict that when the
house is finished it will appear to have absolutely nothing to do with us any
more.