Dementia Support Line
Delirium's impact
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 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may include disorientation, swings in emotion, hallucinations, thoughts that aren't normal for that person or becoming withdrawn.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.'
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.'
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
- Find out more on delirium and dementia.
- Order Caring for the person with dementia: A handbook for families and other carers (£7.99 plus postage).
- See our updated This is me tool for use with people experiencing delirium.
Jessie
saysMy 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.
Irene
saysMy 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
Gloria Small
saysMy 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,
Kim Khatibi
saysThank you so much for your story. My mom was recently hospitalized due to a UTI and her cognition was drastically impacted. I was sitting in the hospital wondering what was going on when I came across your story. I can't believe that a UTI can impact a person in this way. I am so sad to see this happen, but at least understanding what might be going on has provided a sense of relief.
Frances
saysI’m very sorry to hear these stories about people’s loved ones suffering from delirium and fully sympathise with the families involved. My 89 year old, severely disabled father is still suffering from delirium two months after having been admitted to hospital with a severe chest infection and previously undiagnosed heart failure. The doctors managed to save his life and discharge him back to his care home after two weeks but unfortunately for him he developed delirium on admission to hospital and it still hasn’t resolved. Community mental health services have been unable to help so far and his acutely confused, unpredictable and often verbally aggressive behaviour has caused his care home to serve notice on him. My sister and I now find ourselves in the position of having to find a home which is prepared to take him on. His delirium is slowly lifting and he fully comprehends his predicament which somehow makes it worse as it’s not his fault he’s behaving so strangely. His current home is not prepared to give him more time to recover as his behaviour is causing a lot of upset to other residents. He does not have dementia so a dementia care home would be inappropriate but “normal” care homes don’t want to take him on. We have just under three weeks to resolve this but are struggling to find any help or support.
Jonathan
saysIt helps to hear all your stories, and to know I'm not alone. My mother went into hospital with a stomach infection and they left her in bed for 3 months, when they had "fixed" everything she was unable to walk, lost her dependence, and started having delirium. It is hard to know whether to just accept whatever she talks about and ignore it, versus trying to tell her the truth, especially about where she lives, as she thinks her home is not her home. I am mentally exhausted, lost, and feel as though I have no where to go.
Hi Jonathan, sorry to hear about your mother.
Please know that you can contact our helpline anytime for information, advice or emotional support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Some people find it helpful to talk to other people going through similar experiences. If this sounds like something you'd be interested in, explore our online community Dementia Talking Point: https://forum.alzheimers.org.uk/
You can also use our Dementia Directory to find any services or support that is available in your local area: https://www.alzheimers.org.uk/find-support-near-you
Hope this is helpful, and please do get in touch if you'd like any information or support.
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Alzheimer's Society blog team
Valerie
saysMy mum, age 81, has just been diagnosed with Delirium and to say there is no real explanation or help from the medical profession is very true. It's like being in a bad dream and having to find out for yourself what's real and what isn't. I think we the extended family are lucky we have each other but the distress at seeing my mum go from driving and shopping alone to being chair bound and hallucinating is very hard. Ian's article has helped enormously to show what happens and what families need to be aware of. It all started with a UTI !
Helen Scott-Reed
saysI’m going through dad’s first UTI at the moment and I exhausted. Myself and husband are primary carers and found the article very helpful.
Ann
saysI was most interested to read all of this. My 82 yr old husband has Parkinson’s with Lewy Body Dementia. He had a bout of ,what I now understand was probably delirium, at the weekend. It all happened so suddenly. He was refusing to drink and had just been diagnosed with a UTI. I called the emergency services, by the time they came he had had one dose of antibiotics, had improved slightly and was drinking. I was fearful he was developing urinary sepsis, which he has had twice before. So it was fairly short lived but alarming.
I feel the elderly in hospital can become dehydrated so easily. I know the staff just do not have time to see they are drinking. I was witness to this when my husband was last in hospital and I stayed all day to ensure he was getting adequate fluid intake.
I do not think people know enough about all of this, what can cause it and what to look out for. What a sad and terrible condition, I wish I could handle it better.
Marie
saysI also had similar experiences caring for my mother who suffered from dementia and delirium behavior while living with us. She also had UTIs and some of her behaviors became inappropriate and she became very exhibited. She had paranoid delusions saying people beat her up, she saw imagined bruises on herself and others as well and said people were breaking into her room stealing things. She became verbally mean to others as well . She would sit in a chair in the dark late at night just blankly staring. We reluctantly had to bring her to a nursing facility. It was only two months later in this facility that she lost thirty pounds and we were told she was always yelling and agitated and they needed to put her on Remeron, a drug with several bad side effects, to increase her appetite but I believe it was for the agitation. Nursing facilities just don’t want to deal with these type of behaviors. Two days after she received this drug she died. She developed hoarseness one day after she took this drug, dysphagia, congestion and they found fluid in her lungs after . We believe the drug caused this because one week earlier she was fine. I thought my mother would be well cared for in this facility but that was not the case. There were no care plan discussions, no phone calls updating her condition just that last phone call. We were devastated and now feel we sent her to her death by putting her there. I feel that nursing staff and facilities need more education and training related to the treatment of dementia behaviors and related conditions to prevent this from happening to other family’s loved ones.
Gillian Cain
saysI am going through the same with my mum, at 85 she fell at home and broke her hip, 5 weeks later she is still in hospital and has gone from an independent proud woman who did everything herself, to a shell of a woman who is making no sense and having moments of extreme anger then tears. I am the only child and its so hard to see her rapid decline, and its taking its toll on me visiting as it takes me an hour to get there. The hospital have said she will need to go into a care home as she is no longer fit to live on her own, but i see her now and wonder if she will ever leave the hospital alive as she is so confused and so very weak.
Patti
saysHi Gillian. My mom, 82, fell and fractured her back in December and over the course of 2 months in hospital changed mentally, diagnosed with vascular dementia and was curled up in the fetal position, not herself and not making sense. Some friends suggested we ask for a complete list of meds from the hospital to a pharmasist they trusted as very knowledgable with drugs and the elderly. So I did. He suggested she be removed from 3 immediately but said I cannot tell the hospital that it came from him. So I did my own research on these drugs and found they were not helping the symptoms anyways ( antidepressants- still depressed, anti nauseant- still nauseus, Haldol for sundownining syndrome, up all night doing odd things... so I asked the dr. To remove these drugs, replaced the haldol with quietipine, and within 2days she started coming out of it and within 1 week I had my mom back. She still has vascular dementia, but she sleeps all night and her personality is back! She still gets a bit confused about minor things but who cares. Dad took her home 5 months after she was admitted. In a wheelchair because of her back but she went home!
Anne Scott
saysSome time ago my mother, who was aged 89 at the time, was admitted to hospital. She did not have dementia, was very intelligent and alert and her extended family expected her to be discharged quite quickly. Then, out of the blue, she showed symptoms of delirium, thrashing about in bed and flailing her arms around. When I asked one of the nurses why she was like this she said she didn't know. After a day or two she was back to normal and, once again, all her extended family expected her to be discharged. In fact, we had arranged a 90th birthday party for her for the following month. We went to see her every day and she was back to her usual lively, chatty self. Then we received a telephone call asking us to go to the hospital. When we arrived we were told she had died - to say we were shell shocked is an understatement.
To this day we believe she had been administered drugs which caused the delirium.
Shelley Rose
saysHi Anne
My Mum got delirium from the Hospital giving her Oxycodone for a fractured arm.Very dangerous drug for the elderly but the Hospital staff will never admit their mistakes
Patricia
saysThank you for posting your story. My mom has had 3 bouts of delirium that have come on suddenly and have lasted 2 to 5 days (on and off) over the past 2 months. We did a urine test. Dr. said borderline UTI. When it happens she keeps saying she is not at home (far away) even though she is standing in her kitchen where she has lived for the past 13 years. She is not distressed other than the first time it happened 2 months ago. She does not want antibiotics. She says she.is drinking lots including natural cranberry juice. Do we need to force her? She lives on her own. I might need to go there twice a day and make sure she takes them correctly but I work fulltime over an hour away.
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Patricia
saysMy mom has had bouts of mild delerium lasting anywhere from 2 to 5 days (on and off). It has happened 3 times in the past 3 months. She has the feeling like she is not at home but she is sitting in her livingroom where she has lived for the past 13 years. She is not distressed about it other than 3 months ago when it happened for the first time. She does not want antibiotics. Do we need to force her? She lives on her own. I might need to go there twice a day and make sure she takes them correctly but I work fulltime over a hour away.
Carolyn simpson
saysHi my mum in afraid just went like your dad and was diagnosed with this today. She is 86 just swearing calling nurses when she was a real lady and church goer. They have just give her drugs today in at home worried sick her mind is seeing terrible ghosts telling her to do things. She as just lost her wedding ring today after it as been in for 60 years. My dad carn t walk but he is sat at home crying. I no what to expect now she as a urine infection. What heartbreak times to come over night turbo g from a true lady to a rude swearing woman. Sat hours with her. Thank you if only I knew before when mum wouldn't take medication for the infection. I would have made sure she had taken them. Sorry for your hardship but truly no how you feel.