Books
Search
Contact





Subscribe
  to the RSS feed.

A cup and saucer
©  2013  Rose George

Posted in Blog — 11th December 2013

For me, it was the knives. For my mother it was the tea cup. Ordinary household objects that meant such dreadful things.

The cup came first. My mother, Sheila Wainwright, now 73, asked her husband John, my stepfather for 30 years, to put a cup on a saucer. He couldn’t. He waved it about, he put it somewhere else, he put it everywhere but where it should be. She had had worries before then, at his occasional lapses of memory. She joked about him having Alzheimer’s as a way of warding it off. At that point she knew the joke was real.

Around that time he started banging his head, saying ‘What? What?’ The neurologist told him what, in 2004, when my dad was 66. He actually said, ‘Good news. It’s early onset dementia, not a brain tumour.’ Good news? ‘Yes, I could have said he only had three months to live.’ The inappropriateness of that neurologist’s words set the tone for the next eight years of ‘care’, where things got so bad, my strong, powerful mother seriously planned suicide.

She tried to find help. By now they had reluctantly left my beautiful childhood home in Dewsbury, West Yorkshire – to move to a small village near Wakefield where she thought my dad could wander off with less risk. She contacted the local Alzheimer’s Society. They ran a day care centre, but although John soon needed someone to occupy him constantly – slowly he stopped reading, watching TV, socializing – he wasn’t bad enough to tolerate sitting in a circle and throwing a ball around. He knew enough to know that he had suddenly become some kind of patient or problem, and of course he resisted.

After a couple of years, his vocabulary dramatically diminished. He tried his hardest to keep his words, writing every day in his diary. Those entries are heart-breaking to see, as the forms of the letters get shakier and shakier until there are no letters at all. This rapid disintegration of language – aphasia – makes us think now that he had another kind of dementia, but no-one diagnosed it and now we will never know.

The diagnosis of Alzheimer’s was almost rote. He had dementia, so it was probably Alzheimer’s. He had dementia, so he was prescribed Aricept, then other drugs that gave him angina bad enough for us to rush to A&E; others that gave him a near stroke; others that caused him – we think – to tip over while seated on the bed and cut his head, needing 14 stitches. The doctors were flailing as much as we were. It was trial-by-drugs.

We kept looking for help. After dozens of phone calls my mother found that she was entitled to an elderly carer’s social worker, who was wonderful. We were entitled to some money and found carers through private associations. Plenty came and went. Over the years, there were social workers, health workers, care workers, doctors. But my dad resisted many of them, some were unsuitable, some didn’t come back. There was no consistency of care. In the end my mother got a few hours’ respite a week.

Anyway they were no use in the middle of the night, when he woke up snarling, terrified and terrifying. We tried to find respite beds in local care homes, to stem her exhaustion, but there were none, or the care homes were horrible. As soon as he became aggressive, the carers stopped coming altogether, for health and safety reasons.

My two brothers, my sister and I took him out as much as we could, while my mother was reduced to begging friends to come and visit. But although she had a close circle of good, kind friends, a number disappeared.

We tried to keep his mind busy for another 20 minutes, and then another, as we tried to calm the rages, the smashed television sets, the fear and panic of a man who had enough brain left to know something scared him, but not what.

My dad could still express himself in other ways, sort of. Almost to the end, his fingers still tapped out music playing on the radio. Once, when he had hardly any words left, we walked through our village churchyard and he said ‘eerie.’ I was profoundly shocked. If he had that word, did he have others trapped inside? Were we treating him like a child when he understood more than we knew?

But the disintegration said otherwise. I don’t know if it was more distressing when he shouted and screamed at being washed and showered and helped to the toilet or when he stopped caring that people had to clean him, accompany him to the toilet, show him what to do.

This was a man who was always impeccably dressed, whose handkerchiefs were ironed. His personality and ability disintegrated as his brain rotted and shrank. My mother watched her loving husband look at her with blankness or contempt and sometimes hatred. And yet dementia is classed as a social condition, so that the state is not required to pay for long-term residential care. Calling it what it is – brain damage – is too expensive.

This is not a rant against the NHS. I’ve had plenty of arguments with my mother about its failings, with me defending it. But in the case of my stepfather, it didn’t seem to know what to do. Society didn’t know what to do.

Six years after the teacup, I visited my parents’ house and noticed that the knives were not in the block on the counter. For months we had suspected that things were worse than my mother admitted. It was obvious that she was exhausted, bereft and stressed. She was getting three hours sleep a night. We knew that he had locked her out of the house at 3am one day, so she was begging him in her nightdress to let her back in, but instead her previously loving husband pelted apples at her head, and spat words at her that he would have been mortified to use before, with pure hate. She called the emergency social services number. Answerphone. She called the police. By the time they turned up, my dad was peaceful, smiling at the constable who couldn’t see why she had been called.

My mother didn’t tell us that he had struck her a few times, only sometimes accidentally, or that he tried to push her down the stairs as she clung to the banister. But the disappeared knives told me. They told me that the situation had become dangerous, that she was really scared.

At her lowest point, my mother made a plan. My mother, who had seen her first husband – my father – drop dead of a heart attack in front of us, who had then brought up two toddlers alone, a widow at 35. This strong, wonderful woman decided that the best thing for them both would be to drive off a cliff.

Before this could happen, someone luckily gave her the number for the helpline run by Admiral Nurses. I’d heard of them: they are the equivalent of Macmillan nurses for dementia, providing dedicated support to carers. But there were no Admiral Nurses where we lived, sadly. They would have made such a difference. Even so, my mother says the person on the helpline saved her life, because he understood exactly what she was going through, the fear, despair, and shock at your beloved husband treating you now with hatred, blankness or rage.

Not long after the knives, he grabbed the steering wheel while my mother was driving in the fast lane. The car had been the last place he felt calm. We knew then we had to section him. The final decision was made one evening, but a doctor was unavailable and my mother had to spend a night next to her husband knowing it was probably the last they would spend together. Ironically, after so many years of little sleep, she tried to stay awake, to stretch out the last hours.

I hate to remember that morning in May 2010: my mother sobbing and clinging on to him, police, social workers and a doctor we’d never seen before coaxing my dad into the ambulance, pretending it was a trip like any other, lying to him, trapping him like an animal. It was despicable and we had no alternative, because the only care available to aggressive dementia patients, at least where we lived, is to lock them up. We confine them in dirty, horrible ‘assessment centres’, and we drug them into dribbling passivity. There was nothing else on offer.

Over the next year, my dad was sectioned three times. He emerged briefly, because my mother hated every minute of him being there. She searched desperately for another solution. Eventually she found an expensive care home a few miles from their village that seemed kind and safe, and he went there, until he lashed out, of course. Instead of having a strategy to cope with aggressive dementia – hardly uncommon these days – the home had him sectioned again. They said he was a risk to other residents. My mother arrived with my brother at 2pm to find my dad drugged, slumped in a chair, covered in vomit and having messed himself. No-one had cleaned him up. They sat there until 11pm waiting for a police escort (all the police were at a football match).

Locked up again, he rapidly deterioriated. My mother visited every day, and still we couldn’t stop the weight falling off him. She fed him high-protein food, but she wasn’t allowed at meal-times, and there weren’t enough staff to make sure he ate, or they weren’t bothered. They said Alzheimer’s was causing the weight loss. Five stone of it. There was no stimulation beyond a TV. It seemed the only strategy there was to wait for them to die. It worked. In six months, this tall, fastidious, witty man was reduced to a stumbling, dribbling wraith, with bed sores and mysterious abrasions.

I am deeply ashamed of what happened to him. We were a strong, educated, knowledgeable family. Some of our family friends were top consultants, surgeons. If we couldn’t navigate through it and find help, who can? Like so many carers, we ended up drained by the disease. Care homes wouldn’t keep him. He couldn’t be at home. There was nothing in-between. Even now I can’t see what else we could have done.

Finally my dad was sent to casualty at Pinderfields hospital in Wakefield when his injuries – three large abrasions on his forehead, bedsores in his groin and behind his knee – turned septic. He was there for several hours, screaming and weeping before being put in a female ward for the night, then a side room. He had no idea where he was and there was no-one to tell him, just a shut door. We wouldn’t do that to children but apparently it’s fine for someone with less understanding than a five-year-old.

Finally he was put on a geriatric ward. There were kind and lovely nurses on this ward, and some who weren’t. Another patient was aggressive and shouting, like my dad used to be before the drugs shut him up and shut him down, and an auxiliary once said loudly, “what a nasty old man.” My mother went to her and said forcefully, “don’t say that. It’s the disease that is nasty, not the man.” You would think anyone working on a geriatric ward – where three quarters of patients have some form of dementia – should know the difference.

My mother visited every day. After a week or so we noticed that his drip was switched off every time we arrived. Sorry, they said, and switched it on again. The next day, it was again off, and so on. Finally I read his medical notes and saw something like ‘dying adult care pathway’. No-one had told us. We didn’t know he was supposed to be dying. To this day I don’t know how he went from ill to terminal without us noticing.

But we didn’t protest, because his life was so diminished, and we were grieving and exhausted and stunned. What was the point of fighting for his life, for him only to be locked up again?

We stopped insisting on the drip. We stopped trying to feed him. He was heavily sedated and on January 4, 2012, with us all at his bedside, his breathing turned into bubbling by pneumonia, he died.

The nurses gave us all tea and sandwiches in another room so they had time to clean him. When we went back to his body, someone had laid a sprig of flowers on his chest. I will always be grateful for that small but huge act of kindness.

His death certificate says he died first of pneumonia and secondly of Alzheimer’s disease. They could have listed another cause of death: a refusal to properly care for dementia sufferers, even when they are violent, and an equal inability to care for their carers. My dad died of dementia, but also because dying was the easiest way to treat him.

 

 

 

56 Comments»

I hesitate to say that this is a lovely piece Rose, because it’s not, but it is wonderfully written, and completely necessary.

I am terrified about dementia: the possibility of it occurring in my parents, or in me or my loved ones. I remember reading Janice Turner’s piece about dementia ‘villages’ abroad, and wishing that we had something like that here. In 2013 Britain, it feels completely barbaric not to have any real care plan in place.

I’m extremely sorry for your and your family’s loss, and hugely impressed by your mother, who sounds strong beyond measure. All best wishes.

• Posted by Kat at 12:56 pm on Dec 11th, 2013

Thank you for so generously sharing your family’s story.

As a Hospice caregiver in the USA these stories are not new to me. We need to do more to educate the public so they know what’s potentially coming in their future!

SB

[WORDPRESS HASHCASH] The poster sent us ’0 which is not a hashcash value.

• Posted by Susan Baughman at 1:25 pm on Dec 11th, 2013

Such a searing article, and sadly so true for many. You have spoken for the families of Alzheimer’s and dementia patients, who often feel they are unheard.

One thing I know from my own experience of an Alzhemer’s patient is that the weight does indeed drop off them towards the end, no matter what they are given to eat. They also get bedsores as they get thinner, no matter how much care is taken, because their skin is so fragile. This is exactly what happened to a relative of mine who was cared for at home. I think more needs to be done to make people aware that this is part if the condition, so that care homes are not unfairly blamed, or people caring for a relative at home do not not blame themselves.

I wish we had been told about the weight loss and sores, as it would have meant that numerous painful tests for cancer were not carried out as the weight fell off. I was also interested to read what you said about the loss of language – we had that experience too, but again were not told that it was an integral part of the progression of Alzheimer’s, resulting in more needless test and distress for the patient.

I hope your mother knows that she did all she could possibly have done, and more.

• Posted by Minty at 1:35 pm on Dec 11th, 2013

My dad has Alzheimer’s. At the moment he is angry…knowing that something is wrong, but not sure what. Unwilling to admit that he forgets things, he accuses us of not telling him, of shutting him out, and ignoring him.
I am terrified of what is going to happen to him in the future – my mum is resisting any kind of help, and will not seek advice at all. I want to show her this blog, but am wary of upsetting her.

• Posted by Morag at 2:49 pm on Dec 11th, 2013

Thank you so much for writing this piece, my grandfather is on a fast, downward spiral with dementia at the moment, as well as having next to no mobility.
My grandmother is caring for him, with us different family members helping whenever we can, but with no help whatsoever from social care, and my nana is reluctant to call out doctors etc in case it results in him being sectioned. She called for an occupational therapist to assess what is needed for him and in our area the waiting list is 11 MONTHS. There seems to be no system in place whatsoever for dealing with this disease that affects so many people.
But, thanks to you, I’ll be calling to enquire about elderly carers social workers and Admiral Nurses.

• Posted by Danielle Walker at 3:06 pm on Dec 11th, 2013

A well written ,truthfully article full of emotion. People need to know the truth about dementia and the lack of support and care !
I’ve got all this to come , I’m 52, married with 5 children, 2 grandchildren. Nobody is I immune !

• Posted by Chris at 3:37 pm on Dec 11th, 2013

Sorry , forgot to mention , I have empysemia ,vascular degeneration and alzhiemers

• Posted by Chris at 3:39 pm on Dec 11th, 2013

Many thanks for all your comments. Minty, yes, I know weight loss is common, I suppose because it was combined with such off-handed care, we got suspicious. He had abrasions, ulcers, damage that we were never given any explanation for.

• Posted by rosegeorge at 3:58 pm on Dec 11th, 2013

Chris, I’m so sorry about your diagnosis. I hope you get some systems in place. Have you got Admiral Nurses in your area? I recommend them very highly.

• Posted by rosegeorge at 3:59 pm on Dec 11th, 2013

Pressure sores are not an inevitable consequence of any illness or condition. They are a sign of inadequate attention being paid to pressure areas through skin care, moving and handling. Issues with diet and nutrition renders a person more vulnerable meaning we, as nurses should be ever more vigilant.
I am sorry Rose. I have been a MHP for many years. My husband used to nurse manage an enclosed unit for people w/ Dementia. His every attempt to improve services and care was stymied by short term goal chasing senior managers. The short term goal of saving money that is on basic as opposed to fundamental care. There is a difference.

• Posted by Editor of Mumsnet Suffolk at 4:20 pm on Dec 11th, 2013

Thank you for sharing your story. It is as terrible as it is common. I do not understand how this treatment, much like my father’s before he died this year, can be right.
The line ‘they shoot horses don’t they’ keeps running through my mind.
Proud, fastidious, smart people turned into husks by this awful condition and the drugs that accompany it. And the families helpless and drained.
All strength to you and your family.

• Posted by Olivia at 4:29 pm on Dec 11th, 2013

Very powerful piece – too honest for the Mail I suppose. My father also had dementia – but we’ve realised he was, perversely, in some ways fortunate to have cancer too so he got a place in a continuing care hospital. So many of my mother’s friends are in this same situation, and nothing is done until there is some emergency involving violence. One has been undergoing ‘assessment’ in a psychiatric hospital for four months now because there is no place, no resources. If care funding is being cut it’s hard to see how things will improve. I think the fact it seems to be classified as a mental illness and affects the elderly means it has been stuck to the bottom of the pile in terms of priority. Articles like this, and good old Terry Pratchett, are best way to highlight. Great work.

• Posted by Lois at 4:38 pm on Dec 11th, 2013

My auntie died from Alzheimers aged 59, having deteriorated over 10 years. What made it even worse was that the disease almost killed my uncle as well. He was refused help from every agency he tried and couldn’t even claim carers allowance as my aunt was not deemed ill enough. Her speech was the first faculty to go which was horrendous as she couldn’t comunicate with us. She too became violent, lashing out at my uncle. It was only after he had a major heart attack caused by the stress that help became available. My aunt eventually died in a vile nursing home because we had no other options. My sympathy goes to you and your family.

• Posted by Lesley at 5:41 pm on Dec 11th, 2013

Profoundly moving and thought-provoking. Thank you for writing this, and for sharing it, despite the Mail’s decision (I wouldn’t have seen it there, so I can’t be too indignant.)

• Posted by Antonia Honeywell at 6:24 pm on Dec 11th, 2013

i can’t believe how similar my family’s experience has been with my father. I am so sorry for your loss and understand completely what you suffered.

My father is still alive, but the real man died a couple of years ago. Like your experience we had to find a safe environment for him or my mother would probably not be with us today. It was a hideous experience for all of us and we knew he would not have wanted to put us through so much anguish.
So many private care homes would not have him because of his antisocial behaviour, and our insistence that he should not be drugged up to the eyeballs Social services had to find somewhere suitable for him and we were so lucky. That finally he is in a care home where Alzheimer’s is truly understood and he is treated with dignity. Sometimes he smiles and Ilooks into my eyes and I see My wonderful Dad. But most of the time he is existing in a living death . This disease is evil and cruel and every day , especially at this time of year I weep a little for the man he was.

I just wanted everyone to know that there should be more care homes like the one my zdad is iin…. And guess what Hampshire County Council wanted to close it down… We found out yesterday that it is safe.

• Posted by Katharine Willi at 11:25 pm on Dec 11th, 2013

My mother died of it in July. While your story is different in the detail, it is the same as mine in theme. It is a uniquely cruel experience for everyone. Well told.

• Posted by Scott at 11:57 pm on Dec 11th, 2013

Thanks for all these comments. For some reason my blog won’t let me respond to each one individually. So I’ll just thank you. If you want to discuss or have questions or just need to talk, my email address is on the sidebar here.

• Posted by rosegeorge at 1:55 pm on Dec 13th, 2013

Beautifully written, bravely shared. Thank you.

• Posted by Francesca Wakefield at 3:31 pm on Dec 18th, 2013

I wonder why the rates of dementia are so high now? I don’t think it’s due to ageing as some say, because people have always lived into their 90s and did not always have Alzheimers. I wonder if the increased rates coincide with the numbers of people taking Statins, the cholesterol lowering drugs that cause aphasia, dementia, memory loss, confusion, disorientation, anger, insomnia and shrinkage of the hypocampus. Statins are the most prescribed drug in the world, given to all, not only to heart disease patients, but for “prevention” of disease. Many people say loved ones improved when taken off those drugs, if taking them.

• Posted by harold at 11:07 am on Dec 20th, 2013

I’ve just read your article published in The Week and it brought me to tears. Obviously wonderfully written, but brings memories back for me when I worked in a care home. We didn’t specialise in dementia either, but certainly had many with the disease, and a few agressive. I was hit and spat on a few times, but we always knew it was the disease and not the person. While I don’t remember any being sectioned, I do remember my profound sadness at seeing people reduced so. I always asked relatives if I could see photos from before the disease, it helped to relate to the real person, not just the disease. Mental health still seems to be feared as some sort of weakness, well done on bringing the reality of dementia for both sufferers and family to light.

• Posted by Hester at 1:12 pm on Jan 17th, 2014

I saw your article printed in ‘The Week’ and read it with great interest. I share your other readers’ gratitude for your frankness, and applaud your courage in spelling out your father’s sad decline and your mother’s suffering to confront people with the stark reality of Alzheimer’s Disease – especially when it affects a comparatively young, strong man.

I wonder, though, about the issue you raise of blame. You say “…another cause of death: a refusal to properly care for dementia sufferers…” Refusal? I’m not sure who that’s aimed at or if it’s fair.

One point you make very strongly is that there are not just no easy ways to soothe, distract and reassure a terrified AD sufferer – there aren’t any ways at all, or not that we find acceptable. We baulk at sedation; physical restraints are equally repellant (not to mention legally fraught); talking doesn’t work, for obvious reasons. So what is the proper care that professional staff should be providing but are refusing to? There are a very few “horse-whisperer” style specialists who seem to have the magic touch, but finding one is a matter of luck, not health policy. We need to do better, yes; my question is, how?

IRegarding support for carers, I personally believe that recognition of how vital this is is gaining ground. Having said that, the only really valuable support I’ve become aware of is that provided by people who have been or are going through the same experience. AgingCare, a US based forum, is an example of a tremendous source of positive, loving support among peers. I am also lucky enough to have acquired a daughter in law who actively participated in her own grandmother’s care and therefore relates extremely well to her new grandmother-in-law. The relief of giving and receiving simple fellow-feeling in this otherwise very lonely world can’t be overstated – as you yourself have just amply demonstrated. Thank you again.

• Posted by Suzie Harrison at 1:51 pm on Jan 17th, 2014

I have just read Rose’s article on her Father in ‘The Week’. I have been involved for many years in the care of Alzheimers sufferers and still find it difficult to imagine that there is a possible sensible practical solution to their care [particularly when they are violent].
I have donated my brain after my death to for research into Alzheimers,the only really practical way I can help.

• Posted by Jill Tinsley at 5:46 pm on Jan 17th, 2014

Suzie, perhaps refusal was the wrong word. I don’t doubt that there were well-meaning and hard-working staff. But I meant refusal in terms of society and government refusing to fund adequate research, or provide funds for decent staffing levels. The staff levels in the “assessment centre” where my dad was locked up were poor. The quality of care was also poor: most staff spent far too much time in the living room reading magazines or watching TV. I think there is a happy ground between that and a horse-whisperer. Anyway thanks for your input and for commenting. I also think things are changing re: noticing carers needs.

• Posted by rosegeorge at 6:32 pm on Jan 17th, 2014

hello Hester: thank you so much for reading and commenting. what a wonderful idea to look at pictures. I remember my mum used to get so frustrated that staff weren’t able to see beyond the difficult, violent or sedated man they had to look after. I think she may even have taken photos in to show them actually.

• Posted by rosegeorge at 6:33 pm on Jan 17th, 2014

Good for you, Jill. I agree: it is frustrating. But the answer is more research into both curing dementia, but also into how best to care for people who have it. We’re not doing it right.

• Posted by rosegeorge at 6:34 pm on Jan 17th, 2014

This piece rang home with me – my father had early onset dementia (diagnosed at 60), attacked my Mum during an episode of night terrors and got taken into an assessment centre in early 2010. He died a few days ago of pneumonia as the primary cause and Alzheimer’s as the secondary. The major difference between our Dads’ stories is that we fortunately found a challenging behaviour unit that could cope with him during his violent, angry phase; he even qualified for full NHS funding as his team argued it was absolutely a medical problem, and our PCT (as it was then) agreed. They looked after him absolutely wonderfully for 4 years and they looked after us wonderfully this week.

I appreciate how lucky we were to find his home – there are not enough of them around and the need is only going to increase. At the moment it seems to be a post code lottery and we were lucky enough to live in the right place. Perhaps the advent of NHS reforms will help, but I am skeptical.

I’m so sorry your father clearly didn’t get the care he needed or deserved. It’s a cruel disease and the whole family suffers as a result. Thank you for your post. Parts were very much like reading an account of my Dad’s story.

• Posted by Lizzie at 10:00 pm on Jan 17th, 2014

I’ve just read the extract of your blog published in The Week – my hat off to you for sharing your story, which I hope will raise awareness of the horrors of dementia.

My mother also died from pneumonia following dementia, and was on drugs to limit aggressiveness.

Since her death, I have only come across two beacons of hope with regard to dementia – the Admiral Nurses, and an approach called Contented Dementia, which is outlined in an excellent, clear and practical book by Oliver James.

Those two words (contented and dementia) so rarely go together – what a fabulous goal though.

Oliver James was describing the work of the Contented Dementia Trust – do have a look at their website. Also, a young woman whose father was helped by this approach, went on to fundraise and make a film about it, interviewing other families.

Two of my aunts now have dementia. It will touch us all in years to come and we really do need more hope of caring approachs to support both the suffered and their nearest and dearest.

I hope your fundraising in Yorkshire was successful!

With very best wishes.

• Posted by Jane at 9:24 am on Jan 18th, 2014

Beautifully written, I lost my wonderful Mother to this dreadful disease.

• Posted by Rita Howard at 6:39 pm on Jan 18th, 2014

I read your blog in The Week just yesterday. My father has followed a similar path. Like you the guilt felt at having to make those incredibly hard decisions about care will live with me till I die. The pressure put on other relations, the tears for a lost man. After my fathers condition meant he had to leave the lovely home he had lived in for two years we had the problem of finding another home. I found one that seemed as if it offered the type of care he required but sadly it didn’t. Last week I attended at my request a safeguarding strategy meeting to see if I could get to the bottom of a head injury that left him with a bump the size of a cricket ball on his head and an eye so swollen he couldn’t open it for nearly a week. No one would take responsibility, I was told only recommendations come out of such meetings. Yet again a home gets away with poor inadequate care. When are successive governments going to address this enormous issue of care for the elderly….. Sorry if this rambles but I just felt so moved by your article I felt I wanted to write something, I could go on but knowing others have felt the guilt is so positive whilst living with the nightmare that is Dementia.

• Posted by Linda Brown at 5:29 pm on Jan 19th, 2014

Thank you to everyone who has left a comment here. I’m so sorry that most of you have written because you have gone through something similar: I wish that weren’t the case. I will be posting information about my mother’s fundraising event next year, I hope you can help us support it. I’ll also post something shortly about Admiral Nurses and how you can support them. Thanks again.

• Posted by rosegeorge at 10:59 am on Jan 20th, 2014

I’ve read stories like yours before and they are always heartbreaking. I usually can feel a very slight glimmer of pride because I have worked in various guises in the care industry for over a decade now and have always been part of services I am proud of, that I believe provide a good service to our patients and their families, and are worthy of the money paid for them. Unfortunately I’ve just read your story and am now feeling so guilty because I work in one of those expensive care homes that seems kind and safe. I’ve been there three months and have been trying to live up to my own personal rule “if it isn’t good enough for my mother, it isn’t good enough” and I can’t. I don’t have the resources to provide the kind of care I want and our poor residents and their families pay ridiculous amounts to live with us. I wish I could make it better, and I try to make it right every day. All I can say is that a lot of the workers in these places are trying their best but there is only so much anyone can do when there are five of you to sixty residents and you are just not listened to by management who are in turn being pressured by others. We do care deeply and it feels horrible to know that you are part of a system that just doesn’t work.

• Posted by eleanor at 11:08 pm on Jan 20th, 2014

Many thanks Rose for this piece, I have recently become a dementia friend and run dementua awareness sessins here in the Leeds infirmary . I was really moved by your story but am sorry to say that it is not that uncommon . we really not set up in this country to work with patients with dementia. lets hope that can change in the future with the raising of dementia awareness thank you once again for sharing
Peter

• Posted by Peter at 8:06 am on Jan 21st, 2014

I read your piece in The Week and was very moved by it. It demonstrates so clearly why carers themselves need so much support – it is really harrowing when the cared for person gives no signal of appreciation. Thank you so much for writing so candidly about your feelings. it will help many many people

• Posted by Mike Baker at 1:01 pm on Jan 21st, 2014

I found it very difficult to read your beautiful article on your step-dad’s demise. Beautiful in that it highlighted that in spite of that ghastly dementia, he was still a person – your mum’s loving hubby and your step-dad of not long ago.

I fear for my future at the age of 69, as both my parents died from the cause of dementia. Perhaps they were lucky in the wonderful facilities they spent their last days in, in country Australia. The future scares me, especially as I am an only child – not just for me but mainly for my family who will no doubt have to bear the brunt of any care I need.

I try not to be negative but there seems an inevitability about it.

Although I found your article personally upsetting, I nevertheless got solace from it as it did bring back some wonderful memories of my departed parents and the wonderful help they got in their fading days.

• Posted by Ross Allan at 2:53 pm on Jan 21st, 2014

I have just read your very moving article in the week about your step father. I too have experienced some of what you and your family have gone through. Our mum died 15 years ago a my father did not cope with being alone. A very proud
, intelligent man he did not like to ask for help even though my brother and I tried. He was diagnosed with dementia brought on my poor diet and alcohol. He has no short term memory and there doesn’t seem to be a place in the system for him. I was encouraged to look for care homes. This scared me as the homes I visited were dreadful and were not understanding of dad’s condition. Careers come in to his home but again can’t understand why he doesn’t ring to tell them if he’s popping out to the shops. I have on a number of occasions tried to tell them that he has no memory but they just don’t understand. I recently had to take him to his new GP he had his recent blood results. I sat there with my dad and the doctors informs us that he’s a little concerned as my dad’s white blood cells are quite large which may! Indicate too much Alcohol in my dad’s diet. I was speechless it was then in that room I knew that it was really up to my brother and I to take care of dad as best as we can. He lives second by second. I have on this journey met some fantastic professionals but also ones that lack the knowledge and caring skills that really are so important in this field. I must apologise I have rambled on a bit.
Rebecca

• Posted by Rebecca Walker at 10:17 am on Jan 22nd, 2014

My father was recently diagnosed with dementia/alzheimers (I don’t really know the difference). He knows he has it. He gets upset when he doesn’t remember things. But then at other times he won’t know if he’s saying a story for the 2nd, 3rd time at dinner table.

Worse still though is my mother’s refusal – understandably as she sees the man she loves and respects disappearing – to accept its affects. So she will say “don’t you remember I asked you…etc”. Unfortunately she’ll have given him a verbal list of too many tasks (he always wants to be busy) and then gets frustrated when he doesn’t do them. She doesn’t understand that his brain hasn’t “recorded” it. She needs the help so I’m glad there’s a help line she can call, when she finally realises she can’t cope on her own.

My memory isn’t the best; he and I laugh together when neither of us can remember what we’re having a conversation about. I make sure he writes down and then reads out the phone messages I leave for mum and that he puts it on the table where all messages are left. He knows that I’m not being patronising but I sometimes sense he’s upset that we can’t trust him to remember a message.

We have yet to see the direction his dementia will take and hope it won’t go down the “personality change” route. His mother had alzheimers. Her personality didn’t change; she just didn’t know she was asking the same questions/telling the same stories/reading the same first paragraph of a book. My memory is of her laughing all the time. I hope my father retains his dignity. I can’t imagine him disappearing so brutally.

• Posted by Penny at 12:58 pm on Jan 22nd, 2014

Whilst rummaging around at the back of the cupboard for my mince pie tins, I came across a collection of my knives hidden in a tea towel.
My husband is now in a Nursing Home. He is safe and well cared for but that doesn’t stop me from feeling guilty each day when I leave.
The problem is, the man I long to bring home with me no longer exists.
Thanks for writing this piece.

• Posted by Jane at 5:13 pm on Jan 22nd, 2014

Hi Rose. Your story is beautifully written, and deeply sad. I am sorry for your loss. I still find it hard to believe that in a society where almost everyone has seen a loved one’s struggle and decline with dementia, there is such a lack of policy on it. No one seems to want to even talk about it.

My grandmother is losing her battle, and my family is almost out of options. Like you mention in this piece, she can’t stay home but she can’t stay in a care home or hospital. What else can you do? It is a great cruelty that it should end this way.

Thank you for sharing your story. Together, we’ll find a way. All the best.

• Posted by Keegan Smith at 6:58 pm on Jan 22nd, 2014

My father has recently been diagnosed with Alzheimers so all of this is very relevant. I have two practical questions beyond all the useful tips and advice the article, and the comments, have given me:

1. If it is possible, does it make sense to move to somewhere where this is a good care home? People do this for good schools. Is the same true for care homes? And, if so, how do you find/know where the good ones are?

2. Should the person with dementia be told what they have and encouraged to read through articles and comments like this? Or is it better that they don’t know?

• Posted by Ashley at 8:01 pm on Jan 22nd, 2014

Thank you so much for your moving and touching article on your father’s dementia.
We, too, thought that, as educated adults, we could find a way of caring for our Dad. We found every door slammed firmly in our faces. The attitude was “care home or you’re on your own. I’m pleased you, at least, had a good social worker. My husband called ours “Clare in the Community”.

My father died in 2005 at the age of 95. He had been superman up to the age of 90. How we wished he had had a heart attack then. Eventually, last year, the Ombudsman upheld my case against the PCT and we hope that victory will: a) encourage others to do likewise and
b)make the PCT think twice about treating the elderly and people with dementia so badly.

You are not alone and you’ve made us realise neither were we. I’m not sure that’s a comfort though.

Best wishes to your family, and especially your mother. We do hope she can draw comfort from thr fact that she and her family, at least, did their best.

• Posted by Christine Gunby at 5:02 pm on Jan 24th, 2014

First time I gave ever commented on a blog but I just read your article reprint in The Week. I wish I had had the talent to tell our story so beautifully. For me it was the bruises on my mum’s arms … We were lucky (?) enough to get a frontal temporal lobe dementia diagnosis for my fiercely proud dad in 2006. While I had his three grandsons, he steadily lost his speech determinedly writing in notebooks until he could not write anymore. As I passed on our baby cot to a friend this week, I cried like I haven’t since his funeral in 2010 remembering the last real conversation I had with him … And smiled that it was an argument over his determination to buy the most ridiculously expensive cotbed he could find. My amazing mum cared for him until it was no longer safe, and still feels guilty about locking him away. Lawyers and journalists amongst us we fought for care and support that never came. It’s the cruellest pathway to the end of any life and you have my heartfelt sympathies.

• Posted by Abigail at 2:01 pm on Jan 25th, 2014

Thank you and I’m sorry for your loss.

• Posted by rosegeorge at 6:40 pm on Jan 30th, 2014

Well done on fighting the PCT, Christine, and I’m sorry you had to endure that. Thanks for writing and I’m glad you found my article useful.

• Posted by rosegeorge at 6:41 pm on Jan 30th, 2014

There are no easy answers, Ashley. My mother chose not to talk about dementia or Alzheimer’s in front of my dad as she thought it would distress him. Other people choose to talk about it openly. As for moving to find a good care home, I can’t advise, but if you do find a good care home, I’d jump at it. The Care Quality Commission is supposed to assess care homes, but it has come under a lot of negative scrutiny. They are supposed to be doing better. Other than that, I’d suggest you join dementia or carers forums and ask around. Good luck.

• Posted by rosegeorge at 6:43 pm on Jan 30th, 2014

I’m so sorry to hear that. It is saddening that so many people find themselves at such a loss. Why can’t your grandmother stay in a care home? If she’s not aggressive, that would be my suggestion. Good luck.

• Posted by rosegeorge at 6:44 pm on Jan 30th, 2014

Thanks for writing, Jane, and I’m sorry to hear about your husband. I am glad at least that he is safe and well cared for.

• Posted by rosegeorge at 6:44 pm on Jan 30th, 2014

I’m sorry to hear that, Penny. Alzheimer’s is a particular form of dementia: there are many kinds. There are plenty of books that might help you. I’d hesitate to give advice but one thing I did learn is that contradicting a person with dementia or saying things like “don’t you remember” just increases their stress. I hope she gets some help from the Admiral Nurses helpline. I’d also say that forums of carers of dementia are really useful.

• Posted by rosegeorge at 6:46 pm on Jan 30th, 2014

Rebecca, no need to apologise. I’d suggest you ring the Admiral Nurses helpline, or get in touch with Alzheimer’s UK or Dementia UK to see what they advise. It sounds like you definitely need better care and carers. Good luck.

• Posted by rosegeorge at 6:48 pm on Jan 30th, 2014

It’s not inevitable: just try to keep mentally and physically active. That is not a cure, but it can’t harm you. I’m glad you got some solace from my piece.

• Posted by rosegeorge at 6:49 pm on Jan 30th, 2014

Thanks for reading it and commenting.

• Posted by rosegeorge at 6:50 pm on Jan 30th, 2014

hello Peter, thanks for writing. I live in Leeds and have been watching the dementia friendly initiatives with great interest. Well done for becoming a dementia friend.

• Posted by rosegeorge at 6:51 pm on Jan 30th, 2014

Thanks for writing Eleanor, and so candidly. I am normally a vocal supporter of the NHS and have usually been treated with great kindness by underpaid and overworked staff. But the assessment centre where my dad was sectioned was disillusioning. And the expensive care home where we thought he would be safe was a disgrace. I don’t know what the answer is.

• Posted by rosegeorge at 6:53 pm on Jan 30th, 2014

Thank you for writing so movingly about the consequences of the lack of care and support for people with dementia, and their carers. You also encapsulate why my mother, having survived my father’s dementia, died of heart failure because “dying was the easiest way” to treat her.

• Posted by Nicholas at 7:01 pm on Jan 30th, 2014

hi, I felt i just had to say something. My son gave me this to read and I sat quietly and read every word, and felt every sentance as I too have been in this situation. My husband had vascular dementia for 7 years and I went through everything your mum went through. The only difference being, about 5 years in to the dementia I was offered the help of a CPN nurse who turned out to be my rock! He was amazing and there for us both day and night.my husband also punched and kicked and it took 3 men to hold him down. He too was sectioned when he finally broke my ribs and `i couldnt care for him. I too visited every day and I insisted he was not drugged. I brought him home to die and he was thanfully in his own home for 3 days with his family around him. My 4 children were also an immense support. I felt so much after reading your article. If only these doctors and the system itself knew how it felt,i am sure there would be a lot more help out there. I could go on but i dont want to be boring. I made sure I put ‘vascular dementia’ on his death certificate as my doctor asked me too. she said the government give funding to the most mentions on the death certificates and the more there is, the more money goes to reasearch and help. thank you for showing the public just what we go through and watching the one we love fade from our eyes. Barbara

• Posted by barbara at 2:33 pm on Jan 31st, 2014

Bless you – I’m sorry for your and your families loss, the loss of a husband and step father to such a cruel disease. I’m sorry you were robbed of happy last memories and the struggles you had.

My granddad had dementure and whilst he wasn’t generally aggressive it was difficult, my gran was constantly on alert as he went wandering in the night back to his childhood home in his pajams – I remember when she got two hours a week respite care and how much she enjoyed her trips out. Eventually we had to admit my grandad to a secure “home” it was heartbreaking and he died soon after.

lots of statements from your post strike a chord, 10 years after my grandads death my wonderful active grandma went into hospital in her 90s with a damaged knee after a fall, first they didn’t give her pain relief until after the xray and saw how bad it was, despite her asking for it. She lost her teeth as they moved beds so couldn’t eat, she gained a water infection and with that confusion. A number of nurses were horrid, said my wonderful grandma was senile, couldn’t understand, was aggressive…she wasn’t before she went in hospital. Dips were left in but not connected, infection set in and she got pneumonia from not moving. like you we ended up not getting the drip reconnected, we realized that she was dying…from a broken knee? The treatment of the elderly is horrendous, even more so when contrasted to the treatment of children, NOT that I’d like any child to be treated like an elderly patient. For us the decline in my gran was a month. I don’t know how you manged.

I’m a student, I found your blog whilst researching a paper on human rights, ethics and mental health. I hope future treatment will be better for all.

love to you.

• Posted by Stephanie at 8:18 pm on Oct 2nd, 2014

Thanks for sharing your experience. It is really sad that you had family friends who are consultants who could not support you and your sister and brothers about your father’s care. I was pretty much single-handedly the main carer for my 87-year old father who had vascular dementia but I complained at every opportunity, especially after the initial diagnosis of vascular dementia from a green registrar. I emailed the consultants but it becomes like a full time job. The key issue about getting good social care is that it is mean-tested and there is a lack of joined up thinking with the NHS and the GP/PCT/CCG who may be involved in the initial diagnosis and social services who organise social care. If the person you are caring for has more than 23k In the end, I moved my dad from a nursing home, to a residenatial home and back to his sheltered accommodation flat with a live in carer and I commuted daily from London to Oxford and stayed at the weekend. It was exhausting and at nights I would have to provide the care when my dad called out for care, which he frequently did. However, I had friends who had less than 23k savings who had a social worker and social services organise their relatives care. The system is really broken and I agree with Andy Burnham that we need a “whole person” care approach to adult social care and need social care brought back into the local community. I am not optimistic about more funding for admiral nurses because the whole system of funding adult social care needs a radical overhaul.

• Posted by Manuela Fernandes at 1:33 am on Oct 30th, 2014
Leave a comment»