Ian Holloway was completely unprepared for the effects of urinary tract infections and delirium on his late father. Gareth Bracken from Dementia Together magazine speaks to a son who hopes his difficult experiences will help others.

A man who wants to raise awareness of delirium and urinary tract infections

Ian Holloway

Ian Holloway is visiting the offices of Alzheimer's Society to talk about his father, Ernest. Ernie, as he was known to friends, had Parkinson's disease dementia and experienced regular bouts of delirium in his later years that were triggered by urinary tract infections (UTIs).

'I didn't appreciate what such a relatively trivial thing could do to an elderly person,' says Ian, who wants to raise awareness of UTIs, delirium and their impact.

Unprepared

Ernie was a trained carpenter who ran his own building and maintenance firm for 40 years, a job he loved.

'He was a very practical man who lived down the shed, sharpening tools and making and repairing things for friends and neighbours,' says Ian, a 55-year-old broadcast engineer.

In 2005 Ernie was diagnosed with Parkinson's disease, and years later he developed Parkinson's disease dementia.

'The effect was mind-blowing. It was like he wasn't my dad – he was a completely different person,' says Ian.

'For five or six years he was OK and getting on with his life, with Mum supporting him,' says Ian. 'But then he started getting more confused – perhaps that was an early sign of dementia.'

Ernie gave up driving in 2011 but was still mobile in 2014 when he first had a UTI and experienced delirium, which lasted for a couple of days.

'The effect was mind-blowing,' says Ian. 'I didn't realise how dramatic a change it could be. It was like he wasn't my dad – he was a completely different person.

'He was a reasonably quiet and private man who was calling out in the hospital. We found him lying at 90 degrees across the bed or trying to push himself out of it.

'I was unprepared for the franticness of it all.'    


What is delirium?

Delirium is a treatable condition that can come on in a matter of hours or days. It has a wide range of symptoms that may include disorientation, swings in emotion, hallucinations, thoughts that aren't normal for that person or becoming withdrawn.

Although it is different from dementia, older people and people with dementia are more prone to develop delirium. It is often a person's response to an underlying medical problem, including infections such as UTIs.

If a person with dementia has symptoms that aren't normal for them or they suddenly start to behave differently, it is important to see a doctor so that the cause may be found and treated. If someone is experiencing delirium, it also helps to provide a calm and supportive environment.


Character change

Ernie experienced the symptoms of delirium again a number of times while in hospital for five or six weeks, followed by a stay in a rehabilitation unit.

'He would get obsessed with particular things, like the radiator near his bed,' says Ian. 'For a period he was fascinated about France and his sister-in-law who was over there.

'It was very distressing, seeing a completely different character within the same person. I was balancing the emotion of seeing my father like that with having to keep stable because Mum was there too.

'Dad also became practically chair-bound, which for such a practical man was upsetting to see and no doubt very frustrating for him.'

For the last 20 months of his life Ernie was cared for at home by his wife, Ian and private healthcare staff. He continued to get UTIs and experience delirium as his dementia progressed.

'His mental condition slowly got worse and worse. He would talk about random things,' says Ian. 'Thankfully it never got to the stage where he didn't know who was in his company – that would have been more traumatic.'

It was a very tough time for Ian and his family.

'When Dad went home from hospital in July 2014 I went back to my parents' house thinking I would only be lending a hand for a couple of months. But for 20 months I lived there,' he says.

'Work gave me extended leave but when I returned we had to get carers in from 9–5 to help Mum.'

Ian Holloway speaking with Gareth Bracken

Mentally drained

As well as juggling work with helping care for his father, Ian also supported his mum with the administrative side of things, including liaising with doctors, sorting out medication and escalating concerns to the community care team.

'I was mentally and physically drained. Until you've been there and done it you don't realise the strain,' says Ian.

'I was driven by my desire not to see Dad go into a care home,' says Ian. 'I wanted to keep him in his home environment as long as I could.

'It was difficult, I was mentally and physically drained. Until you've been there and done it you don't realise the strain.'

Ernie's dementia meant that he often experienced confusion, particularly during the evening. This may have been what is known as 'sundowning', when a person with dementia is more agitated or confused in the late afternoon or early evening.

'The company he ran used to have a maintenance contract with the local police, and he'd want to go to the police station to get his car out,' says Ian. 'He'd be completely focused – it could go on for about an hour. In the end I'd make a fake phone call to the sergeant to satisfy Dad.' 

Having picked up another UTI in April 2016, Ernie was admitted to hospital, but the infection didn't respond to antibiotics. He died a couple of weeks later, aged 85, due to advanced dementia and Parkinson's.

Feeling helpless

During his father's later years, Ian experienced feelings of helplessness

'I wanted the doctor to come up with a magic pill, but there isn't one,' he says.

'I always felt things weren't happening quickly enough, but then everyone's relatives have those same demands on the NHS.'

'What I needed in those initial few weeks was a mentor to steer me through, someone who had been through it all before and knew the daily trivial problems that would build up into big issues. That would have been extremely useful.'

Ian instead had to search for his own solutions to avoid further UTIs.

'I was trying to get him to drink more but the Parkinson's affected his swallowing, so he was reluctant. It was a catch-22 situation.'

'I used special cups for people with Parkinson's which had a cut-out for the nose so they could be tipped back These things helped but I had to find them myself.' 

Ian Holloway

Awareness

Although he can't change his difficult experiences, Ian hopes to 'turn a negative into a positive' by raising awareness of UTIs and delirium.

'There needs to be a campaign to make people aware of how infections affect people with neurological conditions, or a campaign to make people drink more,' he says.

'Even if someone isn't thirsty, get them to maintain their fluid levels – it can keep the body free of infection.

'Obviously Dad's dementia would still have progressed, but we wouldn't have gone through the pain we did.'

Next steps

Dementia together magazine: April/May 18

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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35 comments

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My Father was diagnosed with Alzheimers and Vascular Dementia at the beginning of this year 2020. This month , May , my mother unexpectedly passed away. She was sick for just 4 weeks and we were only allowed to see her in the last 2 days of her illness. My father was there at her bedside, however everyday he cannot remember what has happened. It is utterly heartbreaking for him and all of us too. We have contacted the doctor that saw in when he was first diagnosed, however that unit is currently closed and despite calling each day for the last three days and asking fro urgent help, we have had no contact what so ever. Dementia UK have returned our call, however I find it just unbelievable and in human that in the panic of Covid we have lost the sense of our selves and care of those who are very sick or struggling with dementia. There is no reason why Alzhemiers support cannot be made available over the phone, rather than leaving unprepared, and grieving families to struggle on with no support. WHAT IS OUT THERE??

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We're so sorry to hear about everything you're going through, Karla.
Your father's dementia diagnosis followed by the recent and sudden loss of your mother must be a lot for you to deal with. Please know that we are here for you, and we want to help.
By calling 0333 150 3456, you can talk with a dementia adviser who can listen to your family's support needs and tell you what's available. They can also offer you the option to receive regular calls to keep in touch. Our dementia advisers want to find out how you are and offer advice and support when things change. Find out more about our support line here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
You may also find that speaking with other primary carers and family members of people affected by dementia helpful. Our online community, Talking Point, is available 24/7: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We wish you all the best at this difficult time, Karla.
-
Alzheimer's Society website team

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Thankyou ever so much for this fascinating insight into delirium with dementia, a friend of mine went into hospital following a fall and she was diagnosed with uti and delirium and after 5 days got sent home, she also has dementia and is now back in hospital we only knew about delirium a day before being discharged but she certainly wasn't the person I knew a week before and after 20 years I now her very well I deed.

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I am so grateful I have across this. I now realise my mother has been suffering from delirium every time she has gone into hospital with Infections over the last 7 years. It is only now, she has COVID that her hospital doctor mentioned mute delirium and I looked it up. The information is invaluable and will help me and my father no end. We are hopeful she will come out of hospital, but having read this, I can be prepared that my father may have to consider full time carers for her (he is 80). This has been such a comfort to me.

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Hi,
My Mum has been suffering from recurrent UTI's and delerium with agitation, delusions and I vivid dreams that carry on when she wakes up.
She is 95 years old and also suffers from low sodium levels and dehydration seems to make matters worse.
Mum was diagnosed with Alzeimers last year and I want to keep her at home for as long as possible, which I am finding difficult during the lock down.
I have gained some comfort from reading the comments here, comments I identify with and I realise others have the same problem.
My doctor provides little support with the uti's, I have asked for regularranging testing before the utility becomes severe and causes delerium. Community Mental Health team have been very supportive, and are also pushing for regular testing.

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My Dad's had alzheimers for 10 years now. He still lives at home with my mum and between myself and my brothers and sisters we've supported her in caring for him. We've shared the load! 2 years ago he was admitted to hospital after a fall. He'd fractured his spine. There wasn't any treatment apart from a back brace, which he wouldn't tolerate. After 6 weeks in the hospital he developed Sepsis and we very nearly lost him. Turned out he had a UTI !! Since then he's had a couple more and has one right now! probably his worst since the one that almost killed him. Without exaggeration, it's absolutely horrendous! He can't walk, talk, feed himself, he's in a state of delirium! I'm writing this at 4.30 am sleeping in the same room as him to make sure he doesn't attempt to get out of bed, which he always does! The thing he just can't let go of, even in his current state - is going to the toilet. It's his own personal battle, which he just won't give up on! He want's to get to the toilet, no matter what! He won't pee in a bottle, so myself and my mum have to physically force him onto a commode and although a shadow of his former self (he was a big strong man) he's still really heavy, far too heavy for mum and I to be attempting to lift, although we do because we have no choice. Over the past few days he's ended up on the floor and we've had to figure out a way to get him back onto his bed. I couldn't agree more with Ian, that awareness and prevention of UTI's in dementia patients needs to be highlighted as a priority in their care and should be treated as a medical emergency. We feel desperate and torn as to what to do if things don't improve - soon! (it's his second day on a course of antibiotics). Both Mum and Dad have been self isolating for 2 weeks now due to Coronavirus and I've been here with them for the last week. We are terrified to call a doctor in case he decides to admit Dad to hospital but sadly I think it's inevitable. I'm heartbroken at this awful situation. What would you do?

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Hello Lynda.
We're so sorry to hear about the difficulties you are facing right now. It sounds like a really challenging time for your whole family.
Please know that our dementia advisers will listen and give you the support and advice you need, including coronavirus advice. Please call our Dementia Connect support line on 0333 150 3456. (More information on opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line)
Wishing you all the best, Lynda.
-
Alzheimer's Society blog team

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I'm sorry for what you are going through. I know how difficult things can be.

It sounds like a hoyer lift may be a huge help to you and your mom. Ours has been a wonderful support, and as time goes on, we seem to need and use it more and more. They can be used in numerous ways in transporting people and are quite easy to operate. There are special slings for toileting.

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Just weeks before her 100th birthday in November 2019 my mother fell and fractured three ribs and her collar bone, and later developed a chest infection. While in hospital, almost overnight she began to suffer delirium and was suddenly no longer the mother I had known. Delirium was completely unknown to me and I have had to find out for myself what it is and what it means for my mother. Thanks to everyone who has contributed to this site to help me learn wat I need to know.

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i found,
theses life stories very rewarding off giving knowledge to other people
who are experencing the same problem
it is also hard to get medical facts and what to expect for your loved ones as no one seems to know

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Thank you Ian and everyone else for sharing your stories. My Mum (86) who suffers from Vascular Dementia has just had surgery to pin a fracture in her hip. By day 5 she was showing slight signs of delirium by thinking that something was in front of her face and trying to push it out of the way. On the evening of Day 6, she was confused, unaware of her surroundings, thought her deceased husband was at home waiting for her, that she had lots of dogs at home needing looking after and that someone had stolen her coat. We had experienced the same scenarios with my Father 2 years previous in very similar circumstances and he had Alzheimers. Unfortunately Dad didn't recover and passed away a few months after he was admitted to a care home.
I agree that this needs to be spoken about more. I feel that the nursing staff at the hospital may not be able to distinguish between my Mums "dementia" and the delirium. As family I think it is important that we give information to the nursing staff as to how her dementia usually presents itself and to highlight what is unusual for her. I understand also that UTI's play a large part and as most older persons need catheterizing after surgery, this may have an impact if the bladder is not fully draining. We hope that Mum will get over this and the nurses have told me today (Day 7)that they have had lucid conversations with her so fingers crossed that it doesn't have too great an impact on her.
Much love and strength to you all.

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I Too, have been dealing with my dad, who had a fall, after having a uti, and then developed delirium. Its most distressing to see,i and my dad have been at ours witts end, i have been trying to help him so much, he is know beginning to come back to the real world, so helpful to hear other peoples storys, thankyou so much.

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Thank you for taking the time to share your experiences. My wife was taken to hospital with heart problems at first she was fine then her kidneys started to act up and she was put ICU. A few days later she woke me up I was at by calling me with some bizarre stories about the hospital kidnapping her and worse. This went on for 3 days she would not sleep which made it worse she refused medication iit was confirmed as UTI but she wouldn't let help got very physical. A very distressing time. I have learnt a lot online and from my granddaughter who worked in home for the elderly. Many thanks Barry

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I have to say that the staff at west Cornwall hospital have been amazing my mum has repeat UTI & a scan shows plaques on both temporal lobes. Mum has been feisty & independent until this month, deemed capable mentally of making her own decisions we have supported her as best we can - from a long distance. Watching & hearing your loved one go through this distressing phase is emotionally & physically draining; but health professionals have strict guidelines to follow, & being respectful of the patients wishes is paramount.
Hard to agree with at times but our loved ones often during periods of lucidity make statements to staff that they wouldn’t to family.
All we can do is love & respect their wishes
My Dad is in a home with Alzheimer’s & vascular dementia
Life is difficult at times
But grab onto the glimmers of those you love, & treasure them

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I've just read your story, Ian, and I'm so grateful to you for writing it as I'm going through the same with my mum at the moment. She's been diagnosed with Parkinson's for 7 years and suffering with UTI's and delirium for about 3 years. It's so sad but knowing that I'm not alone makes it easier. Thank you

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My father who was a brilliant academic with a brilliant legal mind and profession in law, started symptoms of which were all unfamiliar to us at the time. He lost his wife after 43 years marriage, suddenly to motor nueron disease. A killer disease!!
She sadly died 8 months after diagnosis.
My father at the time was 83. Later that year of 2017 we started to notice very strange behaviour. Suddenly he stopped communicating on the internet in forums as he often did voluntarily for charity work with students around the world with their legal thesis. He stopped talking to his sister on skype which he did daily for 25 years. When asked why? he said because of day light savings ie. overseas time was affected. Nothing made any sense. The more we tried to reason with him the more agitated and defensive he became.
He was very political and his friends relied on him for advise in every capacity. He was their rock. ..
9 months after the shock of loosing his wife, he fell into deep depression which was natural after loosing your loved one. He felt useless, slowly wirhdrawing and sleeping constantly. I Asked the doctor to put him on anti depressants. That didnt work!!! It wasn't untill he tried to commit suicide at home by drinking a bottle of concentrated dishwashing liquid that we knew he had to be seriously hospitalised... He had a kidney infection, was mal nourished, dehydrated etc etc. Upon admission.
He was transfeted to several hospitals until out of the blue they advised me, he has advanced stage alzeihmers!! How can this happen so quickly???
The doctors advised the shock of loosing his wife, brought the symptoms on earlier.
No gradual effects were observed.
Bang it was overnight, instantaneous......
I do believe he is suffering from hypoactive delirium, which was not diagnosed by any of the doctors _ even now. at age 85. He has been in a nursing home since the episode. Has no appetite and sleeps all day long. He has to be woken 3 times a day to eat. They give him a daily dose of memantine 20mg to help slow the process down, however these drugs also have their side effects. I see my father twice a week to check on his progress but it is more like regress. To make sure he eats, showers etc. He is increasingly difficult now, refusing to eat meat and showering.. He always loved meats of all kinds. His apetite has declined considerably.
I sympathise with you all, as it is gut wrenching to see your strong proficient father drop to this child like person now. There is nothing that we can do. Its frustrating and heart breaking. From a brilliant intellect mind to: "I cant remember. I dont know" in answering everything that's asked of him. All we can do is be strong, but when I come home each time I visit him I cry myself to sleep and sometimes have to take a sleeping tablet to help me with the stress and anxiety of nearly saying goodbye to him.

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My wonderful dad at 95 is suffering terribly with delirium and it is so so hard to watch and listen to especially at night. There was little help or support whilst he was in hospital in fact we had to fight to bring him home so he could get the love and support he so needs. Am angry that this is supposed to be a common occurrence with the elderly following illness but so few medical staff had heard of it and do not know how to handle it they called security to hold my dad down in his hospital bed!!!! 95 yrs old it was horrifying , I now sit up at night so I can be there for him there is not a lot I can do but at least he is getting love not bullying I wish there was more information and help for these sufferers and better trained medical staff in this area so badly needed x

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My mom has suffered from UTI's and the fact that she never has had any symptoms is hard because i am the only one that can see it in her eyes they get glossy and she gets very cold,This month was the very first time she got to where she dropped herself in her sofa and cried in her hands and shouted at me for helping her clean! so i stoped and said i would do it later and i said bye i love you and she aplogised for acting up,her doctor knows she suffers from UTI's but has never asked me about delusions,I did tell her i thought my mom was depressed so i am going to be giving her a small dose of lexapro from the dr gave her 5mg.,she wants to be on her own she lives n a community home for seniors.she has activities and bible studies there she has friends ,i am the youngest of 10 girls only 8 of us left no one wants to help,just me and one sister but she works,I would like to keep my mom where she lives since she has been there over 24 years or more,instead of a nursing home.I wish we all could do for our parents and may godbless them all,thank you all for posting ,it helps me,

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