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may include disorientation, swings in emotion, hallucinations, thoughts that aren't normal for that person or becoming withdrawn.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.
Kim Mcshane
saysHi, my dad has lewis body deem it is absalutely heart breaking to watch my fantastic dad who was so active all his life and so into study and reading turn into this poor man, dad was diagnosed last September but he has completely ygone downhill last 6 months, he is not confined to bed he has no more in his kegs and his upper body is so weak, he has lost so much weight its horrible, he had odd good days mayb when he would be able to connect with us a little but then boom back to sleeping most of the time, very agitated, trying climb outbed constantly, getting aggressive, periods not sleeping, he has had utis on n off im struggling now to know if dementia is getting worse, tho drs etc do think hrs in late stage dementia, i just dont understand how in between a bit of himself comes back he will tell me um his guardian angel and a double gem, and then gets aggressive and so confused, he hasnt saw a dr from march!!! I just speak them on the phone, the Dr thinks there may also be aunt sinister going on n ask about putting him in hospital undergo tests but i couldn't put him through that and dr agreed, even to let him go in to get checked over im afraid so many stories about patients getting covid.. At minute hes been so confused and agitated i managed get urune sample off him last monday it came back he had thrush so dr gave him cream, they also put dad on 8/500 cocodomol incase hes in pain, hrs on mementine, rigvastine patches has been a while but nothing helped him... I moved in wirh mum n dad june 2019 care for mum who was poorly and still is, carers come dad 4 times day wash him in morning in bed then change pad rest tine, but whendad needs bowel movements he goes crazy get out bed so iv get him out myself onto commode although he's so very very thinhrs sich a weight.... I just do not know if its delirium causing these xtra bad times or increase in dementia, dads appetite is very poor i have feed him just things like soups custard etc although today he wouldn't take nothing only his ensure drinks, he keeps his eyes shut most of the time also.. Its just heart break and so hard know what do for best if they take him into hospital i fear about covid and also that they wont have time to feed him etc i know the nhs is good but so understaffed and just afraid dad wouldnt be watched way he needs to be... Sorry for long story.... Its just so hard but no way could i out dad in nursing home it would kill me to do so..... Just hard know what to do and with drs not doing home visits its awful and doing zoom call on my dad just awful, tho hos phyciatrist is so good i can phone her anytime its not same at these professionals seeing dad for themselves... Thanks for reading my long post x
Marie
saysMy dad has just been released from hospital for the last 5 weeks he has had delirium caused by a urinary tract infection . He has hypoactive delirium. His infection has cleared and Mum got him back home yesterday after insisting to doctor that she had to give him a chance at home to see if it helped him. I stayed with her last night he wakened shouting for a drink around 1 am and finally stopped over an hour later when I managed to give him a tablet. He is 78 and a diabetic Which caused him 4 yrs ago due to vascular disease to lose a leg he is now blind and going deaf. This is a nightmare he is totally out of character shouting and agitated he refuses his tablets we have to try and coax him gently but he just shouts no. He swears which he never done it’s bad. My mum wanted him home and we believed that he would improve but to be honest he does not know where he is. He knows who we are which is good but he is not cooperating and the carers are having a time of it as he refuses and protests when they want to wash and clean him. We don’t want him to go to a care home but I will be going back to work next week and don’t know how she can cope with this. The doctor told her if it does not work out to call them and he will be admitted back to hospital heartbreaking. I wish I knew if he will recover out of this
Jo
saysWe are living this nightmare now. Dad had been in hospital for 4wks. Prior to this he was active and at Christmas picking Grandchildren up from school. The change with delirium is enormous! Out of character and quite frankly frightening. He’s still in hospital and at present being medicated due to aggressive behaviour. I’m fearful of how long this will take to resolve, taking one day at a time but each day seems to be worse than before.
Lindsey
saysJo, I am also going through this. I was told that antibiotics would solve the delirium but the course finished days ago and my mum is no where near where she was before. She lives alone so all of a sudden I'm having to think about care homes, But not knowing how well, if at all, she will recover creates a huge dilemma.
Jo
saysHi Lindsey, it’s awful isn’t it.. dad finished his antibiotics after the first week in hospital. Delirium can last longer in some than others and seems to be quite different from person to person. I’m thankful that there is 5 of us so at least when he does come out we can hopefully care for him along with Mum. I really hope your mum improves quickly it’s horrendous to think that she would go from living an independent life in her own home to care home in a matter of weeks due to an infection ..
Lindsey
saysThanks Jo. Could I ask what medication your dad is having for aggression? The awful thing is mum understands she is going to a care home, hopefully temporarily, and she's so angry with us. She's never angry with us so it's so upsetting. I hope your dad improves enough to go home
Jo
saysHi, apologies for my late reply, dad is being give Haliperidol for the aggressive behaviour twice a day in a small dose.
Just remember at all times the Aggression is not your mum it’s the delirium. I hope she improves quickly for you and she gets back into her own home as familiarity I’ve read is the best thing for delirium patients. We’ve been having two visits per day with dad and he has improved over a short space of time. Finger crossed for you x
ANGELA STEWART
saysIans post on Delirium Impact has been a big help to me as my husband has been having quite a few UTI over the last past month , more needs to be done about this as the doctors have classed it down to the dementia getting worse. He has vascular dementia which was diagnosed in march this year thou we think he has had this for about a year before being diagnosed. The first time he a UTI confusion was high on the list seeing people that werent there, wandering around on a night saying he was getting the bus to meet a friend at 2.00 am in the morning the list goes on , but not once did a doctor say it might be delirium found out about deliruim and uti from the admiral nurse. More needs to be done about this as it is frightening for both the patient and the carer, it is also mentally and physically draining its like being in a nightmare and you cant wake up. Time the doctors were made aware of this.
Carol Nicholas
saysMy 95 year old mother developed delirium after being in the hospital for a fractured vertebrae. Prior to her hospitalization she was alert, walking etc. She had three other hospitalizations for falls within 7 years, and she always had difficulty with pain medications resulting in agitation and confusion especially in the hospital. We learned over time to manage her pain with a combination of Tylenol and Advil at home and her confusion would resolve. But the hospitalization for her vertebrae fracture resulted in delirium that did not resolve once home. We could not bring her out if it, and really did not know what it was for about 4 months. She would wake up throughout the night, sometimes 15 times saying she had to pee. She would cry out for help throughout the day and was so confused no matter how much we tried to reorient her. It got to the point where she wasn’t getting any sleep. Her doctor checked her sevral times for UTI but she was clear. Finally, she was referred to a geriatric psychiatrist who recognized that she had delirium. She put her on Seroquel. One tablet at night at 8:00, which helped almost immediately with her wanting to get up to go to the bathroom throughout the night. She started sleeping like a baby. But she still had afternoon confusion, so the doctor had us give her 1/2 tablet at 11:00 am., which really helped her with the late afternoon sundowning. So it was the timing of the medication we had to get right. It did make her a little sleepy after the 11:00 dose, but we were so happy she was napping instead of being agitated snd having hallucinations.
Over time, we have been able to reduce the 11:00 dose to 1/4 tablet so she is less sleepy in the afternoon, and she is more engaged.
I would encourage you to ask for a referral to a geriatric psychiatrist who is familiar with prescribing and understands the nuances of the timing of psychotropic medications. Your loved one may not need long term treatment if the delirium resolves. In my mother’s case she has an increase in memory issues and a little dementia, but looking back, we realize she was starting to experience those symptoms before her vertebrae fractured. She also has hearing and vision problems (macular degeneration, chronic hip pain, etc., ), and as the article explains, her delirium more or less uncovered the dementia. She does now have 24/7 home care as I do not live in the same city,
With dementia, we have learned we have to keep a delicate balance between our need to see and be with her and what’s really best for her in terms of a calm and consistent routine. For example, I used to take my dog with me to visit her, but now she seems agitated when he is there. So he stays home with my husband, We also noticed she would regress for about a week after our visits, so now we carefully are considering just how often and long we should stay at her home if at all. We may decide a nearby hotel is the best thing when Covid risks can be mitigated. In the meantime we FaceTime with her on an iPad and she seems to really enjoy that. Sweet and short.
All in all it’s a process, and we are learning as we go. The most important thing is that our loved ones may not be able to be who they once were or who we want them to be, and we can only do our best to get them the best care to try to make them more comfortable.
Good luck with everything.
Karla
saysMy 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??
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.
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Alzheimer's Society website team
Teresa Harris
saysThankyou 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.
Julie Francis
saysI 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.
Caroline
saysHi,
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.
Lynda
saysMy 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?
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.
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Alzheimer's Society blog team
Mira Olson
saysI'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.
Linda Seal
saysJust 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.
ann
saysi 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
Ellen
saysThank 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.
pamela jayne Mayall
saysI 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.
Barry Mayson
saysThank 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
Claire McDonald
saysI 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
Janette
saysI'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