Protecting the fragile fibres of trust in dementia
Today’s article is a departure from our usual articles about NHS Continuing Healthcare. Instead, The Founder of Care To Be Different, recounts a chance conversation in a café about the challenges of maintaining trust in dementia…
Working at my laptop in a coffee shop recently, I didn’t expect the conversation I was about to have.
Steve, a fellow customer, and I started chatting about what we each did for a living. Telling people that I write about nursing care funding almost always elicits a painful story from the person asking – a story from their own experience with a parent or relative who needed care.
Steve was no different, and he told me his own story…
When his father was at the end of his life, Steve cared for him at home which, as many families know, is one of the hardest things anyone can do.
Before retirement, Steve’s father had worked for the same employer for most of his life. Now, despite being retired and no longer needing to go to work every day, his increasing dementia and absence of short term memory meant that he repeatedly forgot this. He would still get up and dressed in the morning and try to go to work.
For Steve this became increasingly challenging, because in the mornings he would often find his father gone and would subsequently find him wandering around a nearby car park, very confused.
One solution was of course to keep all the doors to the house locked, so that his father couldn’t get out, but something about that didn’t sit right with Steve.
Not knowing what to do next, he contacted a social worker, who had an idea: why not write a letter to his father, but write it as if it were from his father’s former employer – a letter to thank his father for his loyal service over the years and wishing him well in his retirement, now that he no longer had to come to work every day.
Families often talk of the impossible choices that sometimes have to be made about what you tell a person with dementia. Do you tell them an untruth to calm them down? Do you make something up or invent a story to help them understand a situation? Do you pretend something is or isn’t happening – to suit the moment?
Doing this – which can seem like lying to the person – can feel like a betrayal of trust by the caregiver. However, as anyone with a relative with dementia knows, there is very little that’s black and white about the disease and few definitive rights and wrongs. You just have to find a way as best you can to manage the behaviour of the individual person you’re with.
Steve decided to follow the social worker’s advice. He set about drafting a letter ‘from his father’s employer’. He created a suitable letterhead, printed out the letter, addressed it to his father and put it in the post. A few days later, it arrived.
It was a nerve wracking moment for Steve. Would his father see straight through it? Would his father feel that his son had belittled him? And if so, what would happen to the crucial bond of trust between them?
His father asked Steve to open the envelope and hand him the letter. His father then spent a long time looking at it – such a long time that Steve was sure he’d been found out. His heart was pounding.
After what seemed like an eternity, his father slowly looked up at Steve with tears in his eyes and very quietly said,
“They said I was the best employee they’d ever had.”
This single line in the letter had touched his father so profoundly that it had moved him to tears.
They talked for a while about what the employer had said and what it meant to his father. It was such a special moment for both of them. In that moment there was also clarity and understanding on the part of his father: he understood that he had now retired, and that his employer greatly appreciated his lifetime of work.
For Steve this was not only a relief, but also deeply moving.
But what would happen the following day? His father’s lack of short term memory would surely mean they would have to read the letter together many times over the coming days, months and years.
However, from that day forwards, his father no longer tried to go to work in the mornings. The words in the letter had touched him so deeply that he always remembered them. He remembered them for the rest of his life.
I had tears in my eyes as Steve recounted this to me – and so did he. Perhaps this kind of experience and outcome with his father offers a glimmer of hope in dementia care – not in terms of drugs or treatments, but in the very human connection between people, despite the disease.
It’s been shown that music can have a similarly profound effect on memory. Animals too can bring a person’s spirit alive where conventional care strategies fail.
And while the drugs industry fails to deliver for people with dementia, and populations continue to ignore warnings about lifestyle and diet, maybe for those enveloped in the disease right now this offers a way of making things just a little bit better.
Have you used an unusual strategy to help you care for your own relative with dementia? Please share your experience here, as your own insights can help many other families too.
 |
 |
Dear all who have responded, only wish there were more who would speak out, you all have my sympathies, in particular Sue Jenkins. My wife was sectioned 11 months ago after we got unacceptable service from the mental health centre. She had a terrible 6 weeks in hospital and was then transferred to a home. After 2 months of unsettlement I have been trying to get her to our home without success. Apart from all the problems you are all familiar with due to this horrifying illness I have been battling with all concerned including her family ( she is my second wife) . The social set up a best interest meeting which was like a kangaroo court, then because I would not agree the decision took it to the Court of Protection. It is unbelievable what trauma is involved in all this situation and we are not at the second hearing up to now.
My wife was sectioned by the mental health doctors after what I believe was wrongly or unmonitored medication and it was the first time she had been verbally or physically aggressive. She was dumped into a mental health hospital which had an environment which was entirely opposite to what is required for dementia patients, in fact it was more a detention center. Her medication was changed and she was transferred to a care home still very depressed and confused but I was glad to get her out of there. I had been spending 6hours a day with her trying to keep her from going crazy as well as myself. The care home has a good reputation but I could see it was not going to be acceptable for my wife’s situation , it wasn’t environmentally friendly and was communal living and she is a private person.
The local authority were in charge because she had been discharged on something called 117 which I haven’t got my head round yet. The first social worker didn’t get on with things she said she would and after two months was moved to one side and another took over so back to square one. This one set up a best interest meeting which was like a kangaroo court, I.e. I had no chance of winning.all this time people had been assessing my wife and family. I didn’t agree with the BIM decision so the L/A took it to the court of protection so more reports/ meetings flowing back and forwards which I have responded to with my own reports and we haven’t got to the second hearing yet. Just recently the 2nd social worker went sick and I got a visit yesterday from 2 social workers who had been given her work to sort out and so was quizzed as if we were back to square one again. The time and cost and people involved and the trauma involved is unbelievable. How long can it go on and what the end result will be I could not hazard a guess.
I was spending 9 hours a day in the home at present I spend 6 hours a day with her.
This is just a brief overview of the situation. I am 93 years young.
Thank you for your post, Henry. What a very moving account of your situation. II’m sure many people reading it will empathise with the appalling actions and attitudes of the ‘professionals’ involved.
All the stories are interesting – and touching. My experience seems different, however. My wife has Parkinson’s Disease and Lewey Body Dementia. She is perfectly rational except that she hallucinates, and is sure that various folk, usually a family, or a group of “nice people” including children. They never speak and are not threatening except in the invasion of our privacy. My wife gets upset if I want to change or turn off a TV programme they are watching. Sometimes I tell them to go back to their own home’s, whiich also upsets my wife who says that I’m not much of a Christian (I have to agree the way I feel about these intruders, by the way, I am a retired Minister of Religion!). The “visitors” are absolutely real to my wife she cannot understand why they are not real to me – or my family nor the carers we employ for night care.her care. My constant dilemma is how far I “play along” with her delusion instead of saying that the “visitors” are not visible to me.
I would be interested to know if anyone else has a similar experience and how they deal with it.
I am 85, my wife 82, and we have this August celebrated 60 years of marriage. Social Services put my wife in the category of Nursing Home Care, which they would fund. Our recent very long-drawn-out process of applying for NHS Continuing Care has been categorically rejected, so we continue to part fund the expensive night care my wife has needed for the past three-plus three years. Apart from the night carers and some 8 hours of self-funded day help, I am the principal carer 24/7, but with the help of my family we are determined to to keep my wife in her own home so long as health and funds permit.
Hi John,
I have Lewy Bodies Dementia and am for the moment fairly lucid. I’m 60 years old and have had this illness for at least 15 years.
I have delusions that include seeing people, most often a Roman Soldier who often attends my pottery class. A little girl who is most disturbing as she cartwheels across the shelves of pottery work awaiting firing. An elephant who puts donuts in people’s pockets. I also “see” labels of sexually transmitted diseases around people’s necks, usually children, elderly and religious people. I also “smell” faeces usually dog or human, cat urine, rotting and or burning flesh, rotten drains. I “hear” people screaming in pain, praying, sobbing, conversations (as though the radio is on in another room), fire alarms, church bells, flames as in house burning down, people tied to stake and set on fire.
When I am experiencing these times they are completely real to me and I can not accept being told that they are hallucinations. What I can accept is something along the lines of, I know that what is happening for you right now is real for you. I’m not able to see, hear, smell these things myself and that makes it difficult for me to understand what’s happening for you. If you can tell me someway that I can help I’ll do my best.
I don’t know how much help this will be John, as I said at the beginning I’m Lucid and aware at the moment of what is other people’s perception of reality and how it differs from mine.
I don’t believe there has to be a choice between “playing along” with the delusion or admitting that the “visitors” are not real to you. Both things are possible.
When one of my adopted sons was a young child he had an “imaginary friend” Joseph/Anna was a boy girl of 5-7 years old and shared family life for 18 months. During that time my son was well aware that the family could not see or hear Joseph/Anna. We did set a place at the table and would ask before sitting in an unoccupied chair. It was just one of our family quirks until one day on a family outing Joseph/Anna chose not to return with us.
I would like my family and friends to treat my reality in the same way as we did my son’s. My Brother In Law has his own dementia of another form with delusions and on his brief returns to our reality he has said that our acceptance of where he is and who/what he sees makes him feel safer.
Hope this helps a little John, thinking of you and your wife on this difficult journey. If I can be off help in the future do let me know, if I’m able to help I will. Lucy
Dear Lucy,
Your hallucinations must be terrifying as well as offensive, and I feel grateful that my wife (so far) has not had such frightening and unpleasant experiences as yours. I don’t know how you cope on your own without much support.
Thank you for your advice; it is very much in accord with what we try to practice (easier said than done, particularly if one is very tired). I do understand how real such manifestations are, as they seem similar to the reality of the vivid dreams we must all have occasionally when one awakes and for a few minutes feel that the situation and the characters are absolutely real. We are fortunate in that we now receive invaluable support from the local “Living Well with Dementia” Community Nurse who works with the NHS Psychiatrist specialising in the problems of the elderly. With their co-operation we are trying out medication which may reduce symptoms and relieve stress. I hope and pray (literally) that you are receiving similar help, although I know how uneven such provision is across the country. Kind and caring thoughts, John.
Hi John,
Many thanks for your lovely response, I hope that your wife will never have the kind of delusions I have and to be honest it is unlikely that she will. Most Lewy Bodies delusions (from my research) are harmless and often gentle.
Unfortunately I didn’t have an easy childhood, the first 18 years make Hitler and the Spanish Inquisition look like a walk in the park. It is very probable that this is why overall my dementia takes such a horrific turn. The elephants with donuts are fun though.
I’m really glad that you are getting support, it is so very much needed and as you say patchy across the country. I manage my own support and for the most part that of my BIL (as we’re both widowed) too, because either the support is not there or the price is too high. Financially I would have lost my DLA care and mobility to “contribute” to my care and cover mileage to go out. I was also given so many restrictions on what I could do with the time, despite paying the lion’s share that in the end I conceded defeat and dropped “out of the system.”
I’ve spent a lifetime living with and dealing with my past, so although I’d love help now, I’m used to it. I’ve just become a Dementia Buddy at my local hospital for as long as I’m stable enough.
I appreciate your prayers, I Tao so you both have my best kind, compassionate, empathetic and caring thinking.
I wish you both well on this journey, which though often awful has moments of laughter too. Take care. Lucy
My family set up an electronic picture frame, with very familiar picture, where the picture kept changing. This was a really useful diversion and something to talk about, it is so easy to run out of conversation.
My husband had dementia and other conditions, I looked after him at home until the very end after a huge battle Continuing Healthcare finally backdated to the checklist.
I hope this is helpful to some of you cares out there.
Thanks Karin. Good idea about the picture frame.
I’m afraid I haven’t yet thought of an unusual strategy to help care for my husband – I wish I had . The story above brought tears to my eyes too and also the problem to which it was, thankfully and miraculously almost, the solution. It is such a moral delemma for a person/ carer who has always believed in maintaining trust through the truth , to lie seems as if one has no respect for your loved one.
Yet I find myself struggling to think of a solution to my problems which seem so banal, if that is the correct word . . . My husband has always spent a lot of time in our various minuscule kitchens though now thankfully has never cooked a meal. However he likes to make me a cup of tea in a small pan which is easy for him (and me too) to lift Unfortunately he will now put the pan, empty, on a ring which is on and in 1 week has burned out 3 milk pans whilst I have been having a wee nap in the afternoon (I’m a 24 hour carer and get little sleep at night)!. He gets very upset if I ask him not to make tea and trying to divert him with another little job does not work because he does not like other jobs. The community nurse suggested I lock the kitchen door but to me that seems like a violation of his human rights (I am my own worst enemy?) but also I am afraid of his black moods
.
What to do …. I bought a small kettle but realised that he could easily scald himself and woukd not be able to see the the water measure because he has visual (as well as hearing) problems.
I had never realised how complex and quite frightening, exhausting and lonely life woukd become and how what could be done in one hour would take so many days due to watching, directing and answering questions – the answers to which are forgotten in no time at all. I wish more than anything I had been born a saint (my husband is 86, has complex and numerous physical health conditions also and we have been married 51 years).
Thank you so very much for sharing the moving story
Angela
Seemingly small problems are rarely banal when it comes to dementia – I’m sure many readers here will empathise with your situation
This made me cry.
Hi
I really enjoyed Steve’s story regarding his father being unable to retain the fact that was retired. It is so very touching and a memory that Steve will retain for the rest of his life I’m sure. All credit to the Social Worker: a pity there aren’t more with that kind of help and advice to offer.
I can recall many wonderful instances when I visited my late father in the Nursing Home where he was being cared for. My father was also suffering from Dementia, and one memory remains more poignant than any other and I’d like to share it with you.
I arrived at the nursing home and my father proceeded to speak to me in German; his mother tongue was English but he was fluent in several languages. I gently told him who I was and he proceeded to speak to me in French. I then said, “I’m sorry Dad, I don’t speak German or French.” Dad then said, “You’re not very intelligent then are you”. At that point I just curled up – “That’s my Dad!” At that moment there was no evidence of the dreaded Dementia that robbed him of so much.
So many relatives cease visiting their loved ones as the experience can be so very distressing. BUT this is why it’s important not to stop visiting as otherwise cherished moments like this will be missed.
Hope you have time to read this and find it as poignant as I did at the time. There were many moments like this and I wouldn’t have missed them for the world.
Kept up the good work with this site.
Kindest regards
Veronica
What a heartwarming experience, Veronica – thanks for sharing it. Thanks also for your kind words about the website.
This article has move me to tears too.
I battle with my mother’s dementia every day – she is in a wheelchair so does not wonder around but becomes so frustrated it turns to physical and verbal aggression and hatred towards myself in particular but also to my carers – it’s heart breaking and I know the feeling of thinking you have betrayed your loved one – I don’t know where to turn half the time and my mother and I are so very close . I have to go with stories all the time, listen to paranoia, have her not trust me and punch me in the face – it is not her fault, she is a beautiful person. All this and on top of things Social Services and Continuing Healthcare (CHC) causing me so much distress it’s unbelievable – they have tried to sabotage everything I am doing by nursing my mother at home (she is very complex medically) as well as dementia and needs nursing care, but we have been dumped on social services and threatened that if I pursue CHC funding, she will be forced into a nursing home whcih would destory both of us. I don’t know where to turn to and Social Services are bullying and intimidating me – they are trying everything they can to crush me so that I will give up. I will never give up however hard it is and it’s hell on earth anyway. My love for my mother is deep and there is nothing greater than love. I admire the way in which this gentleman dealt with his father and completely understand where he is coming from. God Bless you for being there for him. Sue Jenkins
That sounds extremely distressing, Sue – and, as you say, to have the whole funding battle as well can make things even harder.
I both care for someone with dementia and have a form of my own. From my experience on both sides I would say that the vital thing is to meet the person with dementia where they are, not where you would like them to be.
Quite simply, be part of their reality (unless it is dangerous or going to hurt them/others) and don’t try to bring them into yours.
For those of us with dementia where we are is our reality. Imagine how you would feel if someone that you cared about walked in on you right now and told you that you had on orange trousers with purple spots on. Now you know that’s not true and you correct them. They keep insisting that you’re wrong and repeating the colour of your trousers.
That is what it’s like to have dementia, you know what you believe but your loved ones keep telling you that you’re wrong.
It’s not lying to them to live along side them, even without dementia we all have different views of reality based on our own experiences.
Millions of people believe in something that can not be seen, heard (by most people), smelt, touched and yet for them individually God is real.
If the only thing hurting about the life you’re cared about person is living, is you. Then accept it and make their life less confusing by living it with them.
Thank You on behalf of my fellow travellers on the dementia journey
Thank you for sharing those words, Lucy. That’s really good advice.