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

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may include disorientation, swings in emotion, hallucinations, thoughts that aren't normal for that person or becoming withdrawn.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: Apr/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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62 comments

Good to see this vital piece of information again. Before my father was diagnosed as likely having Lewy Body dementia he had episodes of hallucinations and severe delirium .At first I had no understanding of the causes but I have since realised that admission to chaotic A and E in such circumstances probably rapidly worsens matters . A person is not allowed/ enabled to eat or drink , meaning more dehydration. They may lie on a trolley for hours or days , I struggled to get help there to toilet my father, and if admitted alone I doubt this would have happened at all- so more constipation/urine tract problem. Our NHS has become so wrecked that I do not feel A and E with its noise and chaos is the right place to cater for people with this sort of background. They are then shunted around to an Assessment Unit, rapidly followed by various wards and constant change and more confusion -of staff as well as patient. It is a system guaranteed to make the person's recovery slower and longer than it should be .
My mom has been in Memory Care for 2 years and has had off and on delirium. Most recently, she is falling every night because she cant sleep due to delirium and the anxiety it causes. Huge gashes, black eye, pain from the falls. Hospice nurse recommends 24 hour ativan to keep her in bed, but the ativan makes her completely non-responsive. Says if mom breaks a bone due to delirium, it will be much worse. I guess we are at the end. It is so hard to essentially put her in a coma.

Hi Molly,

I'm very sorry to hear about your Mom. If you are in the UK we suggest calling our Dementia Connect support line on 0333 150 3456 to speak with a dementia adviser. They can provide information and advice specific to your situation.

You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

I hope this is helpful.

Alzheimer's Society website team

I am from the US and lost my husband in March of 2022. It all started with numerous kidney stones and pain from those. After a hospital admission where the Dr's. put in stents because he had a "life threatening infection" and didn't remove the source of that infection delirium set in. He was septic, got a bacterial infection, and diagnosed with Vascular dementia that we suspected had been coming on for at least a year. He also had heart disease and recovered from three heart attacks over the last 23 years
The 39 horrible days in the hospital were very, very similar to the accounts I read here, something I had zero experience with. Sadly my husband passed away. I appreciate all the stories shared here and the insight they have given me on subjects I had known nothing about. Knowing others have gone or are going through the same illnesses (uti, sepsis, delirium and vascular dementia) has helped me feel less helpless and despondent and second guessing what I could have done differently.

My husband came out of hospital after sepsis and chest infection. I was advised he had delirium and this would pass within 6 months as I told thatmy husband who went into hospital came out a completely a different person I was not offered any advice or help and it is now May and my husband is still the same state as when left hospital does not believe we are at home and keeps asking to go home once he has an idea you cannot change his mind the doctor has told us it is not dementia my son and daughter thinks their dad will return and tell me to bear with it I am exhausted mentally and physically coping entirely on my own if I ask my son and daughter for help they think I am being cruel and not thinking of dad are there any places where you seek advice on how to cope with delirium thanks for listening I think I am going crazy

Hello, Beryl.

We'd strongly suggest calling our Dementia Connect support line on 0333 150 3456 to speak with a dementia adviser. They will listen to your situation regarding your husband's experience with the hospital, and provide information and advice specific to your situation. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

If you are worried that your husband's symptoms may be dementia, it's important to discuss this with the GP and ask to be referred to a specialist. Disagreeing with your doctor isn’t easy, but feel confident in explaining the situation. The doctor has a duty to provide the most appropriate support. This page has information to help you prepare and get the most out of your conversation: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dia…

In the meantime, we also have an article about someone asking 'I want to go home' that you may be interested in: https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someon…

We hope this is helpful for now, Beryl - but please do call our support line for more information.

Alzheimer's Society website team

Hi i think my dad just suffered from delerium ...he had acute hip pain...given codeine to take...only took for week...changes started.He was do drowsy ...then 3 nights total not knowing where he was..etc..awful experience for him ver scary .
Hoping this passing now...off the tabs now . Hoping some of his difficult thoughts calm soon

It’s been really helpful reading this thread, currently my dad is in hospital - went in with back pain/ unable to move and it turns out he has a fracture in his lower back. One day after being in he went into this delirium state. At first the hospital didn’t believe us and said he seemed fine but now it’s gone worse they are noticing too (we’re on day 6). They say he has a chest infection too which looks to be clearing up but the delirium isn’t getting any better. Complete madness how he went into the hospital totally sound of mind, independent & clever, and in the space of 6 days he doesn’t know where he is, thinks people are coming to get him and is just in a constant state of confusion / agitation. It’s reassuring to read others stories and not feel so alone. Mum died a lot of years ago now and I’m an only child so definitely feeling the pressure.

I read all letters for both information and
caregivers feelings and experiences. Have
found the BEST way to learn abt. delirium and alzheimer's is to hear from the caregivers and
families. All doctors not created equal.......

UTI heads up awareness - My sister is in a care facility and suffers from dementia but has been very stable and high functioning for years. She is undergoing chemo for breast cancer currently. She's lost strength and recently fell, necessitating a CT but she was ok, just bruised. Within 1 or 2 days she became almost non-communicative and incontinent. The facility medical staff asked me for permission to put her on hospice stating they had seen this often with dementia patients, that just one event like a fall was the final thing that takes them "over the edge". I objected and demanded emergency diagnosis of electrolytes and latent brain bleed. Turns out she had a UTI. So ultimately she would have gone on hospice care and died - of a simple UTI - if it hadn't been detected at that time, because it was confused with the results of her fall. I want others to be aware of this. She has recovered partially. She's not the same but she's much, much better. Her lower function now is most likely because of delirium from the UTI, but at least we saved her life! I am so glad to know about UTIs. I hope to spread the word and help others know to look for this since even staff and some medical professionals aren't always on top of this. Everyone is trying their best but there are just so many things that can be confusing with these symptoms and UTIs MUST be taken into consideration.

Thank you so much for sharing your experience it's helped me understand some of what's happening to my father

Hello my name is barbara I lost my dad 2 march and I feel so much let down my dad was suffering from uti 2 lots of antibiotics strange behaviours let down by his doctors who didnt care I'm devastated mum as dementia I feel so alone x

My husband was taken into hospital two weeks ago after suffering a fall whilst he was in respite and it has been a total nightmare as to put it bluntly different doctors have seen him all basically claiming they know and are treating him for an infection which has caused delirium it is a long saga but tiring and mentally draining for me as his full time carer I am allowed to visit on a carers passport but to be totally honest do not feel listened to baring in mind I have cared for him for the past 6 year since he was diagnosed and have seen him with UTI infections before all same symptoms as he has now but they keep insisting it was a chest infection they have treat him with antibiotics and after the 2nd UTI developed they have put him on stronger antibiotics and he is showing good signs now of becoming coherent/eating more and wanting to get out of bed to move around so I am keeping my fingers crossed and praying these are all good signs however I will add the fact that it does need to change as far as hospitals and doctors are concerned about just presuming they know and doing what they like without including the carer whom may actually know a lot more I had it said to me by a doctor yesterday that it is the decline in his Lewy Body and had I prepared myself for this I advised him I had been preparing since he was diagnosed in 2016 so felt this was quite condescending of this particular doctor as I know in my heart of hearts it is not a decline it actually has to do with him having this UTI and developing delirium.

My dad had suspected UTI over Christmas he was given antibiotics and seemed to improve he was also Covid positive. He never had a cough or breathing problems and after his antibiotics he seemed fine. A week later he started peeing more and started acting strangely within hours I had to call an ambulance as he was acting like he had full blown dementia paramedics took him in and I was told he had Urosepsis he was taken to intensive care for a couple of nights then on to a ward. A few days later they said they had ruled urine out so said it must have been something to do with Covid. They told me my dad was very confused and was t sleeping we are now on week 5 of him being in hospital they have tried so many medications to make him sleep for two nights he did sleep but now again the most he has is 2 hrs he walks up and down the ward confused taking things from other patients I have been to see him and he knows my name and I’m his daughter but mostly what he says doesn’t make sense or he will accuse me of taking his money or stealing his car. I can’t believe 5 weeks ago my dad was totally 💯 was driving a car and if it wasn’t for covid would be flying off to Greece for a break with my mum and now due to delirium he’s a different confused , agitated and sometime aggressive man

My mom exactly! Same symptoms, treated for uti and never sleeps. Horrible hallucinations. She’s gone down hill so fast.

Thanks (Ian) for sharing your family experience. My mom is 83 years old and she's going through some of what you have highlighted about your dad. The most difficult thing for me is that (at the moment) I cannot be with her (I live in Barbados and she's in the States), in addition to having to deal with COVID travel restrictions. My younger sister has to deal with all the ups and downs of looking after her, hospital admissions and so on. A home aid was employed to assist in the day to day care of mummy; however, (as hard as this decision is for my sister & I) we believe the time has come to seriously place her in one of the elderly care facilities that will be better able to provide the care that Mom needs.
I know there's virtual communication (Zoom etc) but I'm still praying that things will work out as it relates to (myself) receiving the vaccine, going through the necessary Covid travel protocols, so as to see and (even if I can't hug her) at least touch her.

My mother is only 76 and has all that Ian describes and worse. I want to reassure those who are agonising over next steps that arranging a good care home for her in July last year was the best thing I could have done. She is safe and well looked after. She is never going to get better but the standard of care is much better than I could hope to put in place and quite frankly I finally have peace of mind. Sometimes it's not about doing the perfect thing, just the best thing possible in the most difficult of circumstances.

Thank you so much for this article from Ian, we are living this now. We have been asked to make the decision as to where dad will go when he leaves hospital! My mum is 81 and I don’t think she will be able to cope even with help. It’s a nightmare of a decision to make with other peoples lives!