Fading from Memory

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.

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.