Rock Bottom

Grannie G

Volunteer Moderator
Apr 3, 2006
81,798
0
Kent
New procedures and dementia don`t mix @Wifenotcarer

I don`t know the answer other than admission to hospital so professionals can help people with dementia get used to things like catheters.

I remember my grandmother becoming confused after surgery and trying to pull the drain out. She was in hospital though so we didn`t have to cope alone.

It`s now 8.27 on my clock so I hope help will soon be there for you.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
near 24 hours of hell since catheter and bag have been fitted, he has spent the whole time trying to get it off. This morning he has the straps removed and day and night bags dragging along behind him. Both bags full of dark pink fluid. Have phoned the District Nurses and left message on answer machine. They come on duty at 8.30,
Hi wifenotcarer!
I am with you on this one! YesI know it really adds to the PD stress , and us as carers take the flack etc that goes with that!!
OH had catheter fitted following urine retention and emergency at A and E..two weeks ago ....nothing really explained at the time......he panicked I was confused and dint know what to do!
Got through the first night and on waking ( he slept I think because of such a long and tiring day at A&E) and likewise 1 thought he was in hospital2 couldn’t understand or remember why he had the catheter 3 constantly fiddling and trying to remove!!
Here we are two weeks down the line and all he wants is to get rid of this bl....dy thing!!!!! He doesn’t remember all the pain when he had the retention.
Don’t know where we will end up with this"...........but he is getting a full nights sleep......I am still waking to ensure he’s ok hopefully that will right itself!
This has not been without blips!!! As he is immobile and has to been assisted to wheelchairs etc, and each time the catheter strap usually requires adjusting! He has also has to be supplied with a barrier cream...... the connection for the night bag was wrong fit so he and the bed finished up like a river! Each of these has resulted in slight trauma which manifests as blood in urine....which made me panic the first time...
DN been good , done all the ordering of supplies etc and advised give paracetamol after the trauma to easy pain.
So we are two weeks down the line!!! He is still not happy with it, wants it removed each and every day.....
Complains like hell about it but time will tell.
Trust the DN calls to you today and hopefully will be able to offer some helpful advice!
Thinking of you!!!!!!
Sending best regards.
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
OH has urine retention, but at least it is an intermittent catheter so isnt there all the time and he is compliant with me doing it. I had a bit of trouble doing it to start with and OH got blood in his urine, which freaked me out too, but his GP was very reassuring.
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Hi wifenotcarer!
I am with you on this one! YesI know it really adds to the PD stress , and us as carers take the flack etc that goes with that!!
OH had catheter fitted following urine retention and emergency at A and E..two weeks ago ....nothing really explained at the time......he panicked I was confused and dint know what to do!
Got through the first night and on waking ( he slept I think because of such a long and tiring day at A&E) and likewise 1 thought he was in hospital2 couldn’t understand or remember why he had the catheter 3 constantly fiddling and trying to remove!!
Here we are two weeks down the line and all he wants is to get rid of this bl....dy thing!!!!! He doesn’t remember all the pain when he had the retention.
Don’t know where we will end up with this"...........but he is getting a full nights sleep......I am still waking to ensure he’s ok hopefully that will right itself!
This has not been without blips!!! As he is immobile and has to been assisted to wheelchairs etc, and each time the catheter strap usually requires adjusting! He has also has to be supplied with a barrier cream...... the connection for the night bag was wrong fit so he and the bed finished up like a river! Each of these has resulted in slight trauma which manifests as blood in urine....which made me panic the first time...
DN been good , done all the ordering of supplies etc and advised give paracetamol after the trauma to easy pain.
So we are two weeks down the line!!! He is still not happy with it, wants it removed each and every day.....
Complains like hell about it but time will tell.
Trust the DN calls to you today and hopefully will be able to offer some helpful advice!
Thinking of you!!!!!!
Sending best regards.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
What a nightmare!!
My husband was in hospital when the bloke in the next bed had one fitted / he was so angry and complained and cried out loud for next 24 hours - could you take your husband to the local hospital and get them to see the process through?? You could take a much needed rest.
I think here in Australia I could probably just take him to emergency section of the hospital and tell them I couldn’t cope !
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
DN called at 9.00, said that blood in urine common after insertion of catheter or attempts to pull out and therefore nothing to worry about unless there are clots. She asked if OH had a temperature or was confused. No temperature normal, but confused?????? Oh Yes, much worse than usual. She said I should offer reassurance and sit with him, try to distract him, at which point I lost it and blubbered down the phone. Then she said that one of the HDs would call in later today..........
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Nothing new there then!
Down to carer , as always.......
More confused...of course......
Just f
Keep on....plodding on......
Best of luck ..........
,
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Ophs a typing error in the above post.....(f) ... please ignore .
As always doing other things whilst answering on TP
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Ophs a typing error in the above post.....(f) ... please ignore .
As always doing other things whilst answering on TP
Ophs a typing error in the above post.....(f) ... please ignore .
As always doing other things whilst answering on TP

Oh I thought the f was a short version of the word to rhyme with Luck. I have been saying THAT word under my breath since yesterday.

DN has been and declared OH free of infection. Blood in urine probably due to his attempts to remove catheter. She also lectured OH about the need to drink loads of fluids, leave catheter, tubes and bag alone and he gave his solemn promise but by the time I had had a quick chat and shown DN out , he was demanding to go to the toilet (because he was "bursting") and fiddling with the equipment all the time. I told him that Astronauts wear the same because you cannot pee in zero gravity. This seemed to please him, but next thing he is wailing that he is far too old to be an Astronaut and never fancied it anyway. I have drawn a diagram showing the equipment and how it works on his white board. Requests and attempts to go to the toilet now reduced to every 15 to 20 minutes so stress levels reducing too.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Oh I thought the f was a short version of the word to rhyme with Luck. I have been saying THAT word under my breath since yesterday.

DN has been and declared OH free of infection. Blood in urine probably due to his attempts to remove catheter. She also lectured OH about the need to drink loads of fluids, leave catheter, tubes and bag alone and he gave his solemn promise but by the time I had had a quick chat and shown DN out , he was demanding to go to the toilet (because he was "bursting") and fiddling with the equipment all the time. I told him that Astronauts wear the same because you cannot pee in zero gravity. This seemed to please him, but next thing he is wailing that he is far too old to be an Astronaut and never fancied it anyway. I have drawn a diagram showing the equipment and how it works on his white board. Requests and attempts to go to the toilet now reduced to every 15 to 20 minutes so stress levels reducing too.
Oh thank yo, wifenot carer, your first comment did make me chuckle!!
And I sure can do with a little light relief!
On a completely different tangent.......OH was extremely tired yesterday.......slept all night ( catheter!!!) was falling asleep while carers showering him this morning eat breakfast then back to bed!!!!!still asleep!!
Dn took blood sugar at lunch time all OK and he was given small insulin injection. He is still asleep?????
All the DN said was if he’s still like it at tea time call first response! When I said haven’t that number etc, said well just call us!!!!
Now back to your hubby.......
I loved the comment that he didn’t want to be an astronaut ‍ bless him.
I don’t think diagrams would have help my OH..
Hope that you have a stand for the night bag I found once this was in place it helped as OH couldn’t see it from in bed and therefore wasn’t unduly concerned about the amount of urine....which by morning can be a bit scary....
Wishing you a better afternoon and hopefully a peaceful night!!!!!
 

myss

Registered User
Jan 14, 2018
449
0
No temperature normal, but confused?????? Oh Yes, much worse than usual. She said I should offer reassurance and sit with him, try to distract him, at which point I lost it and blubbered down the phone. Then she said that one of the HDs would call in later today..........
Oh my, asking if a person with dementia is confused....
 

MaNaAk

Registered User
Jun 19, 2016
11,888
0
Essex
1st load of washing done and now in the tumble drier ( because it is raining again) 2nd load of all he has wet today now on and third load of whites still to do. Earlier I tried to spend a half hour outside sawing wood, popping in every five minutes to see if he was OK only to find that he had put the soaking wet dishes away in all the wrong places and broken a glass, was trying to pick it up in his soaking wet stocking feet and hide it and the next time he had wet himself and the bathroom rug again, hidden the wet clothes in the clean laundry basket, put on pyjama trousers and was sitting in my chair - why? because he had wet his own chair. Gave up the sawing, made lunch (sandwich, soup and a banana) found the banana skin down the side of my chair and half the soup poured into the sink blocking it. All this while wearing 'pull-ups' which remain bone dry because he doesn't pull them down when he goes to the toilet, just pushes them aside, pulls his willy out at the side and pees all down his trousers, and the floor. Sorry to be so graphic. We had to come hope early from Christmas Dinner and again from New year's dinner because he had an accident in the middle of the main course. No once a week day care because they have 3 Wednesdays off for holidays. We have not been apart at all for weeks now.

Audiologist is coming tomorrow to see how he is getting on with his replacement Hearing Aids, (he totally lost the last pair) so I did his ear drops this morning, cleaned the aids & put them in and now they are missing again. Strangely when he has no hearing aids in, he whispers and I cannot hear what he is saying. I did manage to make out him saying that he hears better without them, which is true if he sticks them in without switching them on. I am geared up for supervising their insertion in the morning and removal at night, but he is forever taking them out and planking them wherever, everytime he shaves, combs his hair etc. or because they are 'annoying him'.

We have just heard that a lovely old friend has died and he claims not to remember him at all. I am grieving but no chance of attending the funeral or sharing memories with OH. Also just heard that the Council run Respite Unit has been deemed substandard so no referrals for the foreseeable future. I had been amusing myself planning a break at beginning of February as I suffer from SAD, my depression is always worse this time of year. He decided it was night time when it got dark at 4.00pm and went off to bed in his vest and pants but has been back twice to see if I am OK and ask when I am coming to bed.

I have gone beyond frustration, lost all hope, feel as flat as a pancake, haven't any mental or physical energy left to try and plan ahead. Just carry on like a zombie.

Dear Wife Not Carer,

I know how you feel because it is almost a year since the leader of my orchestra passed away aged 46 from cancer and I was unable to attend the funeral because dad's Alzheimers had deteriorated to the point where the agency could not supply any carers to us until he had been to the doctors. I was freaking out and a care home was only a last point but I was starting to change my mind. I started to look for a home for respite care and also another agency that was prepared to take dad out for a walk.

What I mean to say is that I think you are at the stage where you need to consider getting more carers in before you make yourself ill. I think you should also try respite care if anything to see how you would both get on. I tried to talk about my late friend to dad and this is a horrible thing to say but with severe Alzheimers he was more sympathetic than my youngest invisible who thought I was trying to gain his sympathy when I was getting a lecture about dad and then mentioned my friend.

Don't forget we are all here for you and you should chat to us as much as you like.

MaNaAk
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Oh thank yo, wifenot carer, your first comment did make me chuckle!!
And I sure can do with a little light relief!
On a completely different tangent.......OH was extremely tired yesterday.......slept all night ( catheter!!!) was falling asleep while carers showering him this morning eat breakfast then back to bed!!!!!still asleep!!
Dn took blood sugar at lunch time all OK and he was given small insulin injection. He is still asleep?????
All the DN said was if he’s still like it at tea time call first response! When I said haven’t that number etc, said well just call us!!!!
Now back to your hubby.......
I loved the comment that he didn’t want to be an astronaut ‍ bless him.
I don’t think diagrams would have help my OH..
Hope that you have a stand for the night bag I found once this was in place it helped as OH couldn’t see it from in bed and therefore wasn’t unduly concerned about the amount of urine....which by morning can be a bit scary....
Wishing you a better afternoon and hopefully a peaceful night!!!!!
Lady M - 2 questions for you. 1st I wasn't given a stand for the night bag with all the other paraphernalia and have just left it dangling down the side of the bed - will that be OK? 2nd Question. You mentioned showering which I have not attempted yet. Does OH just go in the shower with the bag and straps still attached? or do you have to remove them and reattach when he is dry?
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
OH has been calming down as the day progressed. Had a short walk around the garden - bright sun but very cold - then had lunch and his usual afternoon nap in his chair. I attached a bell to both of the living room doors so that I would hear him if he was on the move and managed an unbroken 1 hour nap myself on the couch. Feel much the better of that. I'm now off to have a shower, then (fingers crossed) a quiet night and looking forward to day care day tomorrow when someone else can make sure he doesn't head for the toilet, for a few hours anyway.
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Dear Wife Not Carer,
What I mean to say is that I think you are at the stage where you need to consider getting more carers in before you make yourself ill. I think you should also try respite care if anything to see how you would both get on. I tried to talk about my late friend to dad and this is a horrible thing to say but with severe Alzheimers he was more sympathetic than my youngest invisible who thought I was trying to gain his sympathy when I was getting a lecture about dad and then mentioned my friend.

Don't forget we are all here for you and you should chat to us as much as you like.

MaNaAk
I haven't any carers coming in as I can usually cope fine with the washing and dressing bits of OH's care. I have been considering having a cleaner but hopefully if the catheter and bag works such that I do not have so much washing and floor cleaning to do every day, life should be easier in the housework department.

What I really, really want is more day care and/or respite. After assessment we were awarded 2 days per week of day care and 6 weeks per annum in respite, but the reality is that due to lack of spaces we have only got 1 day a week and two weeks and 1 weekend of respite. Another 3 day weekend break booked for end of April. I have been investigating local private care homes who advertise that they do respite care but find that 3 have stopped doing respite as they are permanently full up and the other two only offer respite if it is for at least 2 weeks at a time - £2,400 for a fortnight's stay!! Way beyond our means I'm afraid.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Lady M - 2 questions for you. 1st I wasn't given a stand for the night bag with all the other paraphernalia and have just left it dangling down the side of the bed - will that be OK? 2nd Question. You mentioned showering which I have not attempted yet. Does OH just go in the shower with the bag and straps still attached? or do you have to remove them and reattach when he is dry?
Hi, The stand was sent in with items that were ordered by the DN. they were all delivered directly to home address in plain packaging!!! Like I said OH was fitted at A&E and basically givena bag some velcro and a night bag, No useful instructions or info at al. As the DN calls to do insulin injections she picked it up and done the ordering. The supplier is Nightingales and the products Great Bear. The stand is plastic and like I say gos on the floor(I do stand it on a stay dry sheet, just in case.) Prior to that arriving the night bag was left lying flat at the foot of the bed .
Yes he does shower with everything in place....... apart from what I can o ly call a garter strap ( some would say looks like a suspender) this was also suggested via DN it holds the top of the pipe sucurely in place, to avoid the bag and piping dragging down and causing pain. The garter is replaced after showering but the Velcro attachment for the day bag at bottom of leg is changed when finished showering and dried off.
I hope Oh can come to terms with this, as I say my OH is Oh but still complains!!!!
Wishing you both a peaceful night!!
And best of luck Regards Lady M
 

Rosa☆

New member
Apr 2, 2019
6
0
Just jumping on to say hello @Wifenotcarer. We've had a long term catheter for almost a year (2 previous prostate reduction surgeries but no long term resolution to urine retention). After an initial few weeks of standing for hours in the loo angry if I tried to move him, trying to pull it out etc things eased. Washing loads dramatically eased. Night stands should be delivered with DN order (ours are through charter). Saves waking to empty which we I had to do for a long while as my dad wouldn't tolerate a night bag. For showers I disconnect the 500ml day bag completely so I can get in there and give a good clean! I leave the bag with velcro straps threaded and reattach once were dried off.

Hope you are getting a peaceful night
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Just jumping on to say hello @Wifenotcarer. We've had a long term catheter for almost a year (2 previous prostate reduction surgeries but no long term resolution to urine retention). After an initial few weeks of standing for hours in the loo angry if I tried to move him, trying to pull it out etc things eased. Washing loads dramatically eased. Night stands should be delivered with DN order (ours are through charter). Saves waking to empty which we I had to do for a long while as my dad wouldn't tolerate a night bag. For showers I disconnect the 500ml day bag completely so I can get in there and give a good clean! I leave the bag with velcro straps threaded and reattach once were dried off.

Hope you are getting a peaceful night
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Thank you Lady M and Rosa for such useful information. Had a decent night's sleep until I woke at 7am having heard movement. There he was in the toilet having detached the night bag and all the straps and was washing himself and the tubes/straps in the bidet. He had torn a corner of the day bag in order to get it off the strap. Order restored and himself returned to bed looking sheepish. Poor soul muttering "I don't understand" :(