My Dad died when he was 91, but lived until he was 92.
Nobody would describe those last few months as life.
On his 90th birthday, with family gathered around, dad joked that he would have looked after himself better, had he known he was going live so long. In truth he was in very good nick for a man of that age; especially one who had worked with noisy machinery, amidst dust and grease and spent whole summers, unadorned by sun creams, working in the fields.
……………..and he still had a full head of hair.
Even at 90 he was still active, and would go up ladders, dig the garden, horse around with the grandchildren, use the computer and potter around in his workshop. He was an avid reader and would always have a book open at the table; spine wrecked by the bulldog clip he was using as his book mark. (Anyone who knows my other half will know the pain it caused him to see a book treated in such a fashion – especially if it was one of his own that he had reluctantly lent to dad).
Just to deviate for a moment. I couldn’t remember what type of clip dad had used as his book mark so just Googled ‘bulldog clip’ to check I had the right name; unfortunately, I missed off the letter ‘c’ from the word clip. Do you know how disturbing it is to accidentally view close-up pictures of bulldog lips? DON’T BE TEMPTED TO LOOK; THE IMAGE WILL BE BURNT INTO YOUR BRAIN FOREVER!
The only real sign of Dad’s growing years was his poor hearing. Those years of working as an engineer in noisy environments had taken their toll and, while he was capable of having a ‘normal’ (if you could ever call conversations with my dad normal) one-to-one conversation, he found it difficult to take part in group discussion and eventually just stopped trying because it was too difficult.
The hearing issue did lead to some hilarious moments though. Mum would arrive home and dad would say: “Somebody rang while you were out”. “Who was it?” mum would reply. “I couldn’t hear” he would respond. He could hear the phone ring, but not the voice on the other end. So instead of leaving it he would pick the phone up with the greeting: “Jean’s out”…..”Pardon?”…… “I can’t hear you”…”Who is it?…… “You’ll have to ring when Jean gets back”.
I once had an hilarious ‘conversation’ with him over Skype where he couldn’t hear what I was saying and I ended up holding written signs up to my web-cam with dad replying via written signs even though I could hear him perfectly well! Those are the moments you wish you had somehow recorded.
But I deviate. Dad died on the 28th December 2011 at the age of 92, but, as I said before, by then most of him had left on an earlier train.
A serious virus kick-started a sharp decline in dad’s last year and although he did regain his health he misplaced his will to live (and his hearing aids on numerous occasions)
Sometime during the summer of 2011, I visited while mum was out and I went to keep dad company beside a bonfire that he had built in the garden. He told me that he had been reflecting on the balance book of life and decided that there was a large deficit; there being in his mind, more debt than credit. Reminding him about the lives he had changed, the children and grandchildren he had influenced and had raised, did nothing to change his mind. The subsequent conversation went something like this:
Dad: “I’ve had enough now and I don’t see any point in hanging around any longer. I’ve been doing a search on the internet on legal ways to end it, but I can’t find anything. Can you look for me?”
Me: Stunned silence.
I can’t remember my exact response because at the time I was so upset that I had to leave him by the bonfire in search of some tissues while my son Ben went out to the bonfire to remonstrate with him for upsetting me. The subject never came up again, but so, so many times during those months of misery where he slowly lost his mind and his dignity I really wished that I had listened and considered both his position and choice. He knew his mind was failing him, and at that moment could not have been clearer about what he was saying or what he wanted.
Dad had acted quite strangely for most of his life, so it was quite difficult to tell when the really strange behaviour started. I know mum was concerned well before any of the rest of us noticed anything, but it came to a head one day when he walked out of the front door taking with him all the keys and proceeded to route march along the mile-long country road towards the next village. Mum couldn’t follow because he took the car keys and she wasn’t as nimble as him (and boy was he nimble when he wanted to be). In a scene reminiscent of the human chain in the ‘Golden Goose’[i] it took the local GP, 2 ambulance crew and the police to finally get all 4 ft 11 of him into an ambulance and off to the local hospital.
…and that’s when the nightmare really started.
Dad ended up staying in hospital for about six weeks. He would alternate between being perfectly lucid on one day and inhabiting an entirely different universe on another. While there he managed to rip a fire extinguisher (almost as big as him) from the wall and throw it towards nursing staff who he thought were trying to lock him away. He fended off two male student nurses with a tea tray when they tried to apprehend him after spotting him sneaking out of the ward. On one visit he told me he had checked how far the window opened so that he could jump out (he tested out the drop by throwing his hearing aids out in advance). One day he told me I was the best daughter in the world, and the next day I was the worst for leaving him in hospital. Another occasion he ticked me off for interrupting him as he said he was addressing a very large audience and would now have to start all over again. He asked me what I thought of a business idea he had of starting a fast-food paella (it was always his speciality meal) cafe in Saffron Walden using my two sons as chefs (they were both at University studying physics at the time).
When I walked into that ward each day I never knew whether or not I was going to get ‘lucid dad’, with whom I could have a ‘normal’ conversation (when hearing aids were retrieved from 7 floors below), ‘sleepy dad’ who would say hello, then turn over and sleep the whole time I was there); or ‘grumpy dad’ who wanted to be out of hospital as soon as possible and couldn’t understand why we had left him there to rot. Oddly, on a day that followed one where he had been delusional, he would be able to discuss the delusion in detail and recognise it as such. If he had been horrible to me one day, he would always apologise the next. Occasionally, if he had experienced a mini stroke he would slur his words for a while and always know he was doing so, he used to say that speaking was like ‘dragging through barbed wire’. He was also convinced that his anvil and physics books had been stolen from home and would frequently ask me to check they were still there.
My daily arrival at the hospital would always start with a hunt for the hearing aids, without which no conversation was possible. As well as them being thrown out of the window, another pair was sent to the laundry with the sheets (never to be seen again) and occasionally they would be found in the ears of a neighbouring patient. The usual spot to find them though, would be under the pillow or somewhere in that vicinity, rolled up in a piece of tissue.
Anyone who has been a regular visitor to somebody who has been in hospital for a long period will know that real time stops when you go through those hospital doors. You enter an alternative universe punctuated by weird meal times (lunch at 11.30? really?), linen changes, temperature and blood pressure checks and, if you are very lucky, an occasional visit from a doctor. Unless you are really on the ball you never find your car in the car park because, without fail, you head for the spot where you had parked the day before and you consider taking out a second mortgage to cover the hospital car parking charges. You get to know the hospital staff far too intimately than you would wish and conversely become a part-time resident in your own home where the remainder of the family greet you like a long-lost relative. You will use your dad’s +5 glasses instead of your own +1’s (which you have left in the car) and you will use them to read his charts, any neighbouring patients charts, directions for waste disposal, instructions on operating a drip; all because you are so bored and it has been such a long wait for him to come out from the scanning room, and the book that you bought with you especially for these occasions is sitting with your glasses in the car. After six weeks of eating fast-food from hospital eateries you are likely to become a patient yourself and, due to time constraints, food at home is usually accompanied by “pop, pop, pop, ping” (knife in cellophane followed by microwave ding).
Vascular Dementia, I have learned, does not follow any particular pattern. There were clearly some characteristics that indicated that dad had the disease, but he didn’t quite fit into the box (when did he ever?) and the specialist was never really convinced that it was a correct diagnosis – he did suggest that the delirious episodes could have been brought on by a succession of various infections, being on steroids for too long or the series of mini-strokes that dad was experiencing. Nevertheless, it was apparent to all of us who spent time with dad during those last two months that a large part of the person we knew and loved had gone.
Losing somebody to dementia is like having them bob around on a boat that never quite reaches shore. Occasionally, they will get so close that you can touch them, communicate with them and think that maybe, just maybe they will make it to the shore safely, but just as you hold your hand out to help them step out of the boat, a big wave comes along and off they bob again into the distance.
We resisted the idea of a care home until it was absolutely clear that there was no way any of us could provide Dad with the 24-hour care and safety he needed (we tried bringing him home, but it proved a disaster for both him and us). Thus began the horrendous search for something suitable. Dad had some savings so would be a self-funder; as such social services would do nothing to help; we were given and list of homes and basically told to get on with it (and quickly as they had now decided that dad was a bed-blocker). Already extremely distressed, my mum and I had to trawl around some of the most depressing places I have ever stepped into.
I’m no stranger to the care home. My first job on leaving school was working in an old people’s home and there were things then that the 17-year-old me would rather not have seen (which, several years later, resulted in the matron being sent to prison). It was depressing to see there had been little change in the last 40 years and that the ‘chairs-in-a-circle-staring-into-space-no-stimulation’ model was still in use. That ‘didn’t quite-make-it-in-time’ aroma still welcomed you as you stepped through the door (you all know what I mean), and the requisite television was still playing on a loop to nobody in particular. They might just as well have had a sign on the door saying: ’If you are lucky enough to have any of your mind left, please check it in at the door as you will have no use for it here’.
On one of dad’s good days I had a conversation with him about the home we had decided on and he appeared to have a good grasp of the situation; we were all still trying to kid ourselves that this was just a temporary measure until he ‘got better’ and he took the news quite well. However, he was horrified when he heard how much it was going to cost and, ever the haggler, asked to me negotiate a reduced price if he agreed to do some jobs around the place..
In the end we settled on the least-worst option.
The day dad went into the care home was the day I grieved his loss. Even with the unfounded hope that he would eventually go home, we all knew there would only be one way out now.
Dad would often be out in the garden when I visited at the family home and the one thought that kept going through my mind over and over again, was that I would never see him smiling and walking towards me from some part of the wilderness that was his back garden.
The next two months followed a similar pattern to when he was in the hospital, but now in addition there were late night calls from the care home because they couldn’t cope with the disruption he was causing; they claimed to have specialist dementia unit but up until then they had only had to cope with quiet little old ladies who raised their voices once in a while. Dad was anything but quiet, he spent much of the day sleeping, and most of the night creating havoc. He slept in other people’s rooms, wore other people’s clothes, (on one occasion a rather nice cashmere cardigan with the name ‘Vera’ sewn into the collar), emptied cupboards, turned furniture upside-down, charmed most of the staff and generally made sure everyone felt his presence. Oh, and frequently lost his hearing aids!
You had to see the funny side of things or you would have cried. On one occasion I found myself sitting in a room where the mental health registrar had an out-and-out blazing row with the deputy of the care home over how they were managing my dad. The care home deputy requesting a prescription of stronger sedatives and the consultant refusing with the words “If you can’t deal with these problems you should question whether or not you should call yourself a dementia unit. They couldn’t deal with dad then they couldn’t really call themselves a specialist dementia. They had completely forgotten I was in the room and were going at it hammer and tongs. Another time, when my daughter and I were sitting with dad sharing some cake we had taken, another resident sidled along, whipped the cake from the plate and stuffed it into her mouth with expert speed as she walked by, smiling sweetly at us with squirrel like cheeks.
Anyway, that was before the teeth (mercifully) put an end to it all.
Just before the Golden Goose incident, dad had decided that he wanted to get some false teeth. He had been lucky enough to keep his own teeth well into his late years but as one after the other of them had broken off he had found it increasingly difficult to eat some of the foods he loved, and he eventually asked me to take him to the dentist. What he actually wanted was implants but when he saw the price he decided on false ones.
The treatment and the process of getting the new teeth spanned a few months he had already been in the home about a month when the new teeth were ready.
There I was, sitting quietly in the corner of the room at the dentist; ready to assist on the communication front should I be needed. The teeth were put in and what followed was reminiscent of a badly dubbed film. Dad started to talk and, as he did so the teeth began to take on a life of their own; moving completely out of sync with the words that were being spoken. As if that wasn’t comical enough, and you will have to be over 45 to know what I am talking about, all I could think of as the giggle was forming within, was that buck-toothed vicar from the ‘Dick Emery Show’[ii].
The first giggle escaped without fanfare, but the torrent that followed could not be ignored. Everyone knows that once an inappropriate giggle has been formed there is no way to suppress it (ably described in the Giggle Loop from the BBC series Coupling[iii]), indeed the act of stifling the giggle creates fertile breeding conditions making it impossible for the torrent to be contained. While I was in some pain through laughing so much, with tears streaming down my cheeks all action in the room had stopped with Dad, the dentist and the nurse looking at me wondering what was so funny.
Anyway, back to those murdering teeth……
Furnished with his new choppers I took dad back to the care home and passed on the instructions that the teeth should come out at regular intervals to give the gums a chance to get used to their new inhabitants and not get too sore. These instructions were not, or could not be, followed and in the event the teeth were not removed for several days, causing an infection. This led to a fall (unnoticed by the home staff) resulting in a broken pubis and collar bone and a few days back with those familiar hospital faces.
What followed was farce-like and would have actually been funny had it not been so traumatic. Back in the care home (way too soon in my opinion) dad kept falling out of bed. He would try to get up, forgetting he had broken bones, then fall. However, the care home refused to put any bars on his bed because of ‘Health and Safety’ issues. This resulted in three falls from bed and three hospital stays (and three phone calls to me in the middle of the night) in the space of about a week.
By the third time he was taken into hospital he was in a poor state; in pain from each of his falls and drifting in and out of consciousness. He wasn’t really communicating, and any words that were spoken had reverted to his native Austrian tongue.
What he did next showed that despite what could be seen on the surface, some part of that strong personality remained and that he now was calling time.
In one final act of defiance he tightly closed his lips; refusing drugs, food and water, and what remained of the man went to be reunited with his dignity and the eccentricities and idiosyncrasies that were my dad.
Fred Plisner had left the building.