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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, March 2015 (1 story)

Story 1. Received: March 30, 2015

My beloved dad died in late August 2014. He was just shy of 77. The last 18 months of his life were very difficult and the final 6 months in particular, when he could do nothing for himself, not even turn in bed or express his distress if he was cold or in discomfort. He always knew his family my mum, myself, my brother and his wife and daughter - and most of the few friends who visited him in the last year of his life but his glorious physicality, his humour and wit, his joy in words and language, his deep warmth and love for people were reduced to the gestures of a tiny skeletal figure who could only raise his hand and try to smile in his last days of lucidity. The pathos was enough to set a river of tears in motion. It is only recently that they have begun to stem.

Lewy Bodies begins as a subtle thief. So many red herrings, so many uncertain clues, that lead to confusion and bewilderment as to what is going on, for the individual and for the family. I look back now and can see small changes in my dad as far back as 2000 (aged 63) when he began to lose confidence at work because he could not adapt to using a computer (though I know this is common and does not in itself signify anything other than a certain unwillingness to keep embracing technical change. Dad called himself a Luddite with some pride!). Being so connected to him, which I was, I also observed tiny patterns of behaviour which I had never seen before, an odd pushing out his cheeks and puffing sound, tapping his feet rapidly on the floor incongruous and childlike and no more, but a sense of apprehension started to creep in to me by the early 2000s. I noticed he could not cope with stress of any kind. Increasingly, he needed to be protected from it and signs of depression sneaked in. He often asked for reassurance and a new self-doubt revealed itself. He also became increasingly sentimental he had always cried at tear-jerker films but this tendency became much more prominent and much more uncontrolled into the 2000s. Quite early too, his sleep apnoea and snoring morphed into something more like night frights, where he would find himself with a thud on the floor by the bed. It is only with hindsight that I am able to see these changes with any clarity, with knowledge of the illness.

And yet he did many wonderful things before it took hold and he continued to challenge himself. He travelled alone to India and Nepal to meet my brother there when he was 67. When we met him at the airport after a dangerous and demanding adventure he looked like a man in his 40s. In 2006 he climbed the highest mountain in Slovenia. I have a beautiful photo of him, triumphant and radiant, at the top of the mountain. He celebrated his 70th birthday in style, with a big party organised by my mum at which he sang and played all night. He was a guitarist and singer, with a lovely, sonorous voice that always made me think of Glen Campbell, and he could entertain a whole roomful of people with no apparent self-consciousness.

He was a very clever man. He had been a miner (we are a UK family) and had decided to get out of the trap this represented to him and travel to Canada on his own, to work on the oil rigs. He was only 21. He saved up enough money in his time in Canada to sail back to the UK on the Queen Mary and had a Cunard line ticket on the kitchen notice board as a reminder of his journey. He shared the wanderlust of his Welsh miner father who had also travelled, across America, and they both cycled all over Europe when my dad was 19 and his father 59. In his early 30s, with two small children and a much-loved wife, he left the pit for good, having gained a scholarship to Ruskin College in Oxford, an adult education college for working class people who were bright and keen enough to spend two years training in a profession. He became a social worker. This changed his life and ours in many significant ways.

He grabbed life with both hands and loved to walk and climb. He and my mum walked all over the UK and in (the then) Yugoslavia with a big group of friends who all shared this passion. They took on the Coast to Coast walk, the Pennine Way and many other lengthy treks and I always thought my dad would be fit and active until a ripe old age. He was so strong and athletic. Sometimes I feel like we have all been cheated, and him most especially.

He had a series of health problems from about 2006. That year he was told, without ceremony, by his GP that he had Chronic Lymphocytic Leukaemia. Ironically, it caused him no real health problems, except a tendency to feel the cold, and his blood test results consistently showed no change. But it changed him, quite profoundly. A new kind of introversion came over him, and a sort of maudlin self-pity which I had never associated with him. He began to find Christmas increasingly difficult, could not tolerate receiving presents and would say, 'Please don't buy me anything', 'This is too much', apparently disliking the ritual and the excess. He started to panic much more about leaving the house had he left the gas on? I remember setting off for the airport to go on holiday and his wanting to turn back because he wasn't sure the house was safe. But this change was inconsistent. Other times he would be fine, his old self and it was possible these changes meant nothing.

In 2008 he developed bladder cancer and had to have fairly invasive and very undignified treatment for it. My mum went with him to all the appointments and was his right-hand person, probably helping him more than she realised at the time or than I was aware. He spent Christmas and New Year 2008/9 in hospital grim for all of us but when we went to pick him up to go home a nurse took us on one side and said, 'Is your dad ok? He seems very confused. So we've done a blood test on him to check him out'. My brother and I were incensed and pretty angry with her but maybe she was seeing something we still couldn't at that stage. None of us could. He definitely started to retreat into himself much more but, due to industrial deafness from his time down the mines, a long-term problem, we attributed this to his awful hearing. It was still indefinable and hard to grasp. But I know I started to hold my breath around this time, fearing something dreadful.

In 2009 my mum and I went on a wonderful day trip to Skegness with him, an old seaside town in Lincolnshire where we had gone as children. He drove there and we were carefree and full of fun all day. But heavy bank holiday traffic at the end of the day meant my dad had to drive back in the dark. He was all over the place, hitting curbs, slowing down to a crawl in traffic and my mum and me were genuinely scared. He was panicking himself, saying he couldn't see properly, that lights were appearing as 'starbursts'. I did not want to embarrass or demean him but offered to take over the driving, in desperation, and he wouldn't let me. We privately started to feel that he shouldn't be driving anymore. He came to that conclusion himself, a year later, and that was a terrible day.

Before that, his optician confirmed that he had slight cataracts on both eyes, his right in particular, so we encouraged him to go for cataract surgery, thinking it would be a bit of a tonic given his ongoing treatment for bladder cancer and would ease his concerns about his sight. In July 2009 he went for what should have been a routine operation. When he came out of surgery he was distant and silent. He later told my mum that he couldn't see at all out of the eye he had had done and we were encouraging him to be patient, thinking it was simply taking time to adjust. But dad said they had told him something had gone wrong and he was to go back the following Monday, rather than two weeks later, as was normal. Mum discovered, when they returned to see the consultant, that due to an error with a syringe, they had lost the new lens in the back of his eye. No one seemed prepared to put the error right and he was told he would have to wait, potentially for a month or more, for the uncertain restorative procedure. My dad turned overnight into a frightened child and I could completely understand why. He was terrified, as anyone would be. He thought they had blinded him in the 'treated' eye. I was so angry angrier than I have ever been in my life and determined to get him seen quickly so I pestered and pestered to get an appointment at an eye hospital in a city close to us. Eventually it was still a gap of over a week or more we were seen and I had to hold my dad's hand and lead him in to the hospital and in to the (junior) consultant, who patronised him, did not acknowledge him as a human at all, shouted to convey his message and was generally rude. I lost my temper and insisted on seeing the senior consultant. I made such a fuss that we were soon expedited through the system and seeing the senior consultant, who, by contrast, treated my dad respectfully, clearly mindful of his vulnerability, and explained everything to him carefully. Despite some remedial success, this whole incident was the final straw for dad and, in my opinion, this massively precipitated the onset of the Lewy Bodies, which suggests to me that trauma definitely accelerates it. I still wonder what would have happened if this botch job hadn't occurred; and I still wish we had sued. I know things can go wrong but the way he was treated afterwards was worthy of a lawsuit in itself.

He picked himself up again he was nothing if not resilient and my mum was an absolute hero, supporting him and tactfully enabling him without drawing attention to his illness. He continued to come to pottery with me our weekly joint treat until his ability to drive finally got in the way and we both let it slip. He continued to walk up a one in six hill every day at least once, sometimes twice to go into our home town, pick up small items of shopping. But by 2010 people outside the family were starting to notice the changes. Friends told us they had seen him wandering around town, looking lost, as if he didn't know where he was. He would forget items he had gone to collect from the shops and we would receive a call from kind shop owners who knew him and liked him enormously, saying he had left things behind. He was a much gentler, softer person and in some ways his new vulnerability was very beautiful, if that doesn't sound awful. I have always suffered with psoriasis and he would tenderly touch my feet (where it is worst) as if willing it to get better.

By 2011 the changes were much more marked. He could cope in his own home but panicked on holiday, disorientated in new surroundings and unable to find his way around. He started to fear leaving home. He also began to lose words but, being the creative man he had always been, would develop witty and surreal ways of expressing himself. So a potter's wheel became a record turntable. We still had all our old language jokes and he would come up with delightful phrases such as 'frou frou' to describe something overly ornamental or kitsch. We still had joyful moments a trip round a local antiques shop, laughing at some of the 'frou frou' things; a wonderful return visit to Ruskin, which was one of the best weekends of my life. He hadn't wanted to go but loved it when he was there. I found some of his physical changes charming. We went for a walk to buy cheese for breakfast while we were there and he cut chunks of cheese and placed them precariously on top of his croissant and we both laughed. But he was starting to lose control of his walking, almost running at times as if his legs were not his own, head down, and other times being very slow. He couldn't pick up his legs to get over a style anymore. Whilst we were at Ruskin he fell off a wall we were sitting on and banged himself quite badly. He had no idea how it had happened but it was as if he could no longer judge distance or manoeuvre his own body.

By 2012, his legs were starting to buckle under him when he was doing the pots and my mum would find him collapsed in the kitchen. He also started to forget where any of the crockery went, lining it up instead on the side of the sink. His hands seemed to be closing up and he lost the ability to write and started to struggle to play the guitar, finding it increasingly difficult to hold down the strings his two main loves in life outside his family. I can't imagine what this felt like for him, like losing much of his identity in one fell swoop. He started to lose weight even though he was eating the same amount and my mum was cooking him his favourite meals. He had had the all clear by this stage from the cancer so we figured it couldn't be that. He shuffled when he walked. Finally, my mum made an appointment with the GP (he had resisted this for over a year) and he was sent for a Mini Mental State Examination. We had begun to wonder about Parkinson's, and his own GP speculated along these lines too but obviously also suspected dementia. We went with him to his assessment, for moral support. As with many other people on this site, he performed very well to begin with but was already starting to struggle with drawing the clock face. He had a brain scan and it was suggested to us that there were signs of brain aging. He was put on dementia medication, Rivastigmine. He had started to call himself an old man. This was so incongruous from a man who was always so youthful in looks and attitude but he could feel the changes making him progressively old. My mum had to do more and more for him.

After a lovely afternoon on Christmas Eve 2012 where he had played the guitar and I had sung with him, he seemed genuinely better and brighter. But some time that evening something dramatic occurred and by the end of the day he had to virtually crawl up the stairs to get to bed, with the help of my mum and brother. My mum has speculated that he had had a mini stroke. Early on Christmas day, I received a call from my mum to say that he had fallen out of bed that morning and hurt himself quite badly. I rushed over to see him and we all opened our presents in his room. He seemed in reasonably good spirits, if in pain, and insisted on coming out with us all on Boxing Day for a meal. We had to walk him into the restaurant with two people on either side. He couldn't stand on his own. His eyes rolled in his head and he looked delirious. I have never struggled to eat a meal so much as I did that day. We all felt we had made a terrible mistake taking him there. But this illness was so variable and unpredictable that what seemed reasonable one minute, felt like madness the next. The day after Boxing Day we called an ambulance and he was rushed into the local hospital. Whatever the medication he was on there - for Parkinson's or similar this was where I first started to notice hallucinations and complete mental disorientation. He talked at length to me about a 'portal' and a 'golden chalice' and was very anxious about being left there in the hospital, which seemed to have been imbued with some kind of demonic power. He received good physiotherapy initially and was proud to show me his walking one day when I arrived, using a frame but slowly making his way (with the Physio's support) down the hospital corridors. This was heartbreaking on one level but showed incredible tenacity and will, on another. But the catalogue of medical errors continued. Because he was able to move about a little, he was left sitting in a chair one evening, next to his bed. When I was leaving, I alerted the staff to him being there still and that I was concerned he would try to stand and might fall, unaided. The next day there was a huge trampoline-like mat next to his bed. They had not come to help him to bed when I'd asked but had left him and he had fallen badly, hurting his head. It was another time when I was furious. Around this time he said to me, 'What's that horse doing in my room?' and I teased him (we could still have a laugh, despite everything) and he found this very funny, realising it was some hospital furniture. He also started to see strange red cats and other creatures and sometimes muttered a kind of nonsense poetry which was rather brilliant. He would also start to count for no apparent reason at times, as if answering a question in numbers. But he would also be very fearful at times, saying there were men in his room coming to get him, or that he was trapped in this awful house where people were living like animals and vile things were happening. This seemed like some kind of social work nightmare and troubled him deeply.

After 2 or 3 months in two different hospitals, my mum took the brave decision to have him home and look after him herself, with the help of carers coming in several times a day. It was a struggle for my mum to accept this invasion of their home constantly and the whole panoply of hospital equipment which came with it walking frame, rotunda for moving him, wheelchair etc etc but she did it for my dad. Dad spent most of his time now in a chair and no physiotherapy support was forthcoming in the home. After two visits, the community physiotherapist wrote him off and my mum took it upon herself, mostly unaided, to walk my dad up and down their long garden, sometimes two or three times a day, to keep him mobile. Dad was a willing participant and tried very hard to do what he could but mum bore the brunt of this work, both physically and emotionally. Occasionally - as often as I could due to work commitments - I would be there to help and the summer of 2013 was one in which we spent many hours in the garden, enjoying glorious weather, going on the occasional day trip with the help of my partner and his large car or my brother when he came up from London. We took my dad in his wheelchair to the seaside and to his favourite local haunt and he would insist on pushing the chair rather than being wheeled around in it.

Finally, in December 2013, he developed a water infection and started to bleed badly again. His weight had dropped away dramatically. By this time he was catheterised and, whereas initially he had been able to use a commode to empty his bowels, the accidents were becoming more and more frequent. My mum often had to hold him up with her head so he could use the toilet as he could no longer stand at all. His communication had diminished to an occasional whisper, which sometimes made sense and often didn't. I found I could anticipate often what he was trying to say and would help him as much as I could. So that my mum had some respite, on a Thursday evening I would sit with my dad whilst she went to her beloved choir practice. We had some lovely moments, watching TV together, or me recording him and his memories, on better days. But she was struggling emotionally and physically. It was an enormous challenge doing what she did, day in, day out, with my dad in a hospital bed in the front room, listening out for him during the night and frequently not sleeping. She was crying whenever she went out. It was so terrible to watch the man she had loved and lived with for nearly 50 years fading away before her eyes.

By early December, he was back in hospital with the water infection and this was the beginning of the end. He was left unexercised, lying in bed, for 6 weeks, destroying all my mum's hard work. He had been walking albeit with a great deal of help until November. Again, the Christmas and New Year period meant that staff were in short supply and nothing happened at the weekends. To our shock, the hospital finally told us that in order to have him home that he would require 24-hour care, more carers coming in up to 6 times a day, and a hoist. My mum was so exhausted she couldn't contemplate this at the time she needed a longer break to recuperate - and I knew we couldn't manage between us at this level of input unless I gave up any work entirely. The best arrangement we could reach was for dad to go to a care home close by, only a short walk from their home, which provided residential and nursing care. When he left the hospital - where he was in palliative care, we discovered - he was being fed only tiny amounts of soft food due to an apparent problem with swallowing (which we had never seen), and he had dropped to around 6 and a half stone. His fighting weight had been 11. As soon as he was given solid foods again, in the home, he ate with gusto. The staff had been told he had about a week to live when he entered the care home. He lasted 5 more months but never re-gained any weight, despite eating much better. He could only lie in a chair if taken out of bed. He could no longer move for himself and his communication was often almost non-existent. He had two trips out back home during this period, in his wheelchair, organised by my brother, and this was the last time he saw his own house. During this time though, we said some farewells. He told my mum and me how much he loved us, on separate occasions; we listened to music together and he would still ask me who the artists were for songs which piqued his interest. He would listen to my brother's songs and engage with him, and hold his hand. But he was retreating from the world and probably making his preparations to die. Before, he seemed to have some fight left and to want to live but his quality of life was gone by this stage and I think he concluded there was no way back, nothing more to fight for. On August 28th 2014 he died, following several long hours of Cheyne Stokes breathing and several days with his eyes open but no recognition. He had aspirated on some food I had given him only the week before, which haunted me for months, and the same week had turned to me and said, 'Help me..'. I think I knew what he meant but will never know for certain. My mum was with him right until the very end. She has been a hero of epic proportions. She had spent every day with him in the care home sometimes for six hours and never missed going down to be with him. She had devoted her life to him.

We, alongside him, suffered terribly, for some years, and I wrestle with fears about going the same way but I can only learn from his example, and try to live each day as it comes, fully and freely. I write this in the hope of helping others, as your site has helped me. We have to find a way of raising awareness of this terrible disease in the hope that the pressure mounts for finding a cure.

Daughter March 2015

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