Dementia and Catheter

My dad is 91 and the last 4 weeks is in bed 24/7 due to very weak because of old age.
He has had a catheter for 7 years with our normal problems and main one being blocked which we still aint solved,the past 2 months he kept seeing things in front of the bed and messing with the cover what i put over the top half of his body like a throw.
The big problem his he is very restless and doctor said he does have Dementia, but he keeps going for the catheter to touch/pull or something like that,i have to be there 24/7 so sleep i don’t get a lot of if any.
we have carer in to cream his back side and clean and do pad change every morning and also its only me and dad and i have no other family or close friend to help.
We are in the process of a Hospital bed with side rails but this still won’t solve the problem which is the big one of him pulling his catheter,i have thought of some sort of item to put around his arms/hands which he still have movement but not that long to reach his catheter.
I have tried mitts but he can still touch it and move it.
Some said 24/7 care in a home but its not true 24/7 care as only me would sit by him day and night as they have other people.
I’m sure there are a lot out there with this same problem but i need some advice.
Please any advice to try i will try as doctor came round yesterday 13-2-20 to see him,dad will not listen to you only if your by him.

Hi Jason,
I would seriously discourage tying his hands/ arms as this would be considered to be restraint and could instigate a safeguarding alert being raised.
Is the problem with the catheter 24/7 or only at night? I think you should contact the incontinence team or whoever deals with his catheter. He can’t be the first elderly person with dementia to do this.
Does he wear incontinence products or underwear too>

In the meantime, I can only think of tucking him into bed so that his arms are free but access to down below is more difficult. Also, ensure he has things to fiddle with - you will need to experiment to find what he takes to, e.g the sort of textures he likes. You could make or buy something


Hello Jason
As my husband’s dementia declined he was always rubbing at things, whether it be the anti slip item on his table, or handkerchief, and such like. I used to put a soft flannel for him to fiddle with. He loved his television too. This was in the nursing home. I wonder if you have your dad some sort of soft material he, may feel occupied? Am clutching at straws here for you! All so heartbreaking.

What type of catheter?

Can the District nurse or G.P. surgery give any advice.

Would an all in one onesie be any help.

Hi all.
Thanks for the advice,he has had a Foley catheter for 7 years this January.
I did know about that about the arms this is why i asked and did think that and been told that but you cant even restrict a person in any way so that is why i asked.
I have had so much advice these 7 years on all stuff including this form G.P/Nurses/Carers/carers Hub/Social etc.
He has only been in the bed for 4 weeks upto now being very weak now even with frame so its in bed now from now on.
I live with him as I’m single and looked after him for a good 11 years and that is i intend to do with outside help to come in.
I have to say i have tried with so far good success on last few nights is a very large throw (large wool blanket) and put over him from his chest to his knees and tuck him in, and then he has another smaller one on his top half which he seems to just mess with the top one as the other one is tucked under him and i can pull it off, but he can’t.
He is not angry or aggressive in any way at all just the main thig is restless like messing with stuff and seeing things that aint there but still know a lot of stuff including my name and that it was the doctor that came round and 99% tells me the time or close to the right time,mainly the thing i have said above if i have to name 2 of the main ones,not saying he don’t forget a bit which he does as well he is 91.
I have only just got the care set up and still not 100% yet as under urgent care then just had assessment for long time and then a firm will take over just for morning visits to clean him up.
I have had 5 assessments in 10 days on all stuff so its mad at the moment but i thank you all for your advice and this catheter pulling was the main problem.

When my mum was ill, I googled “Signs of Dying”. There are some very good articles written by people from the hospice movement.
Fortunately, mum recovered a bit, and survived for several more years, but having read the articles I understood more about how the body gradually shuts down. It doesn’t want much in the way of food and drink because the organs that deal with this are not very well.
Fiddling with things is a classic symptom, picking at crumbs that are not there, etc. etc.
I would urge you to read these articles, as it will help you understand the natural process involved.

Has your GP arranged Fast Track NHS Continuing Healthcare for you, so that you can have all the support you need for dad to spend his last days at home?

I have care start in 24 hour after first assessment which is urgent care then its assessment again for permanent care then i will be informed when a firm takes it over which its still on urgent care up to then.
Dad don’t have a lot of big problems in health side like all his blood test and blood pressure are amazing like naming 1 his blood pressure is 118 and not 1 tablet he takes for anything,he has problems like sinuses are very,very bad and just very weak as being a builder until he was 74 and now 91 has kept him healthy in that way just legs have gone so in bed and now the last 6 months Dementia has come where i just noticed little bits and was confirmed 2 weeks ago but hard to tell without test which one as he can’t have as so weak/tired,in last 2 months i have had 4 paramedics and 3 doctors all different ones and work in the own ways where we hit another problem and UTI he had in November but most go off the dip stick urine test which you can’t with a catheter its path lab and number reading together with how the person is but dad was always fine like perfect temperature and felt not to bad but urine did smell and cloudy through debris which is another big problem keep blocking catheter.
Thanks for all your feedback and it does help and i do try and give my bit back to others being a carer for 15 years and delt with a whole range of stuff.

Jason, is the care arranged via Social Services, or NHS Continuing Healthcare?

You are an absolutely wonderful son, feel really proud of the way you have been caring for dad, a son in a million.

Towards the end of her life, my mum also had the problem of cloudy urine blocking her catheter, but she couldn’t manage without it. When it was blocked the nurses told me she ended up screaming with the pain, and she told me herself that it was the worst pain she had ever had in her life. This was the woman who had numerous operations and one had a broken leg in hospital for six weeks (whilst they were making the longest ever knee replacement for her). I’m telling you this just in case dad ends up with the same problem, you need help fast in these circumstances.

Hi and thanks for the reply.
Its always been a problem with dads catheter for years and had it just over 7 years with it blocking up like even changed every week.
In total i have been a carer for coming to 15 years with mom first now dad as i always say if you can’t give a bit back as they were there when we needed them with problems.
Its all up and running from the 8th of this month going to long turn when it does,it was all set up through social services with my first assessment then passed to urgent care so another meeting then 2 weeks ago my 3rd meeting for long term care.
He is eating as good as he always does and drinks 1.5litre of water each day no problem.
He has always for a good few years wanted to be with my mom as he missed her so much and been 11 years now.

This is another thing the problem we had this Tuesday.
It was arranged by OT which came round to asses dad and said a Hospital bed and would transfer dad onto my chair/bed by the side,she said the people would come at 10.30 and put dad onto the bed then new bed set up and put him back and dad would be on the fold down bed for around 1 hour.
Did not go that way,the bed came and set up for 1 but i rang nurses to get transfer as soon as driver arrived but the thing was.
OT the person never told me she passed it over to nurses and i never knew time scale as 1 hour was way out and i was never informed at all and then OT told me she don’t know the transfer time scale…i went mad…as i was not informed at all so.
Transfer time is…2 to 4 hours in the day and after 5.30 its 4 to 6 hours wait, dads first time was from 2 till 4 hours but the end of the 4 hours went into after 5.30 so then 4 to 6 hours came in (i was livid and upset all in one) so to round it up.
Dad was on a bed/chair folded to a bed (mine) by the side of his bed from 10.45 till 8.30 p.m still with bed clothes under him as just lifted him on that a soiled pad,no cream on a very sore bum all creased up and don’t forget Dementia which he tries to get out of bed and not in the middle as the side of the bed is by a wall,if i would of knew i would of put new pads and cream etc.
Im very,very angry on this and had to put chair by him and sit by him,he kept asking where was he. Sorry for being so long to read.

Jason, if the care is being arranged by Social Services, does dad pay towards his care?
Or is it now all arranged by the NHS?

You have described an absolute shambles concerning the bed, you were quite right to have a go at them. All these people are very well paid and should be doing their jobs properly. Social workers in Hampshire start at over £30,000 plus perks!!!

I’m awaiting assessment…yes another one …so when long time care is set up with a firm i will know the cost as its 30mins each morning x2 as 2 carers so 1 hour per day which the cost will be 7 hours a week on cost.
How it works is once its passed over to a firm as had assessment for long time care just finding a firm now to take it on i will get a cost then, the standard rate off the social form i have is £14.14p per hour so if that’s the case its around £98 a week which is mad for just 1 hour call per day.
People say a lot to get help but they need to see the prices help is as at the moment its free on urgent care upto 6 weeks max.
I will not in any way be able to do it on this price a week but i have been told to wait and see so i will.

NHS Fast Track Continuing Healthcare can be arranged by the doctor. All the care dad needs FREE of Charge!

It’s all 100%done and call off works and pensions and all free as from 2 days ago as swapped over to long time care.
Thanks a lot for advice.
I have another topic on catheter which i will post now.
Thanks all.

Great news. Thanks for the update.