Rock Bottom

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Still undecided about the catheter - in fact unable to make a decision about anything. I am exhausted mentally and physically. OH seems to have taken a turn for the worse, rambling on with the same questions endlessly. I wrote on his board "We are NOT going out tonight" but that only led to endless "Why has IT been cancelled" and "Are They coming here instead". He went off to bed fully clad (in case THEY turned up) around 7.15 but was back up and down every 10mins or so, saying he heard a car stop or the door bell ring. This went on all night and has become commonplace now. This morning he was up early, told me he had slept well!!! and agreed on a short outing to nearby town where there is a Council Bi-election. Today there will be a visit from the 1st Minister to support our candidate (who is a long time friend) and, having been unable to do any leafletting or canvassing, I thought we could at least swell the crowd today. OH said OK as long as he could just wait in the car, but later, when I had got ready to go, announced that he had a headache and needed to go back to bed, where he remains. You would think that I would get used to this palaver, but it seems so little to ask, to get out of prison for half an hour, to see my friends and show support. I have only left the house twice this week - to take him to the GP on Monday and to do the food shopping while he was at day care on Wednesday. Perhaps I am stir crazy ;):eek:o_O
 

myss

Registered User
Jan 14, 2018
449
0
Doctor thinks it would best if OH is catheterised and has a bag tied to his leg. He explained that this is not an easy solution in that he might not tolerate the catheter and there was a risk of increased urinary infections but on the other hand, wetting himself everytime he goes to the toilet and then pretending there is nothing wrong, already puts OH at risk of infection and leaves his skin in that area inflamed.

I have to think about and discuss this option with OH (fat chance of that as he is already denying he saw the doctor today) and get back to the surgery when I (WE?) have decided. If I give the go ahead the District Nurse will visit to fit the catheter and show me what to do. It just seems like a big leap down the Dementia Path and something else to add to my caring duties. Something that I cannot expect my daughters to do, so even less chance of them taking sole charge of their Dad if I need to go somewhere without him.

To be honest @Wifenotcarer, I sort of wish my dad could have that but I'm not sure if he would just try pulling it out. Do you think your husband - if he accepts it - would leave it alone for it to work as it is?

I obviously don't know your daughters, but I would think about asking them if they would be willing to change it/help out? Some of the things I do, clean, wipe, cream, etc with my dad now is something I would have never thought I needed to ever do 2-3 years ago but I do because it has to be done whether I don't mind or not. :eek::)
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Well, decision made at last and we are going to give the catheter a try. District Nurse says she will come 'someday' this week to fit it, so trying hard to keep the house reasonably clean and tidy, as she has stressed the importance of 'hygiene' when dealing with a catheter.

Been having really foul weather (Snow, wind, rain) this past week which prevents us getting out in the garden and lowers the mood. I'm really not feeling great myself, my own short term memory is poor and I cannot concentrate on anything, probably due to OH's constant interruptions. He is still insistent that we 'have to go somewhere this evening'. This starts about 4.00pm and goes on till say 10pm. He goes to bed around 8 but is up and down every quarter of an hour, sometimes with day clothes over his PJs sometimes stark naked, convinced that we have somewhere to go, or, alternatively, that it is morning and we need to be up and dressed. Classic Sundowning, I suppose. At least he has stopped demanding to go HOME all the time, so we have a bit of variety in his obsessions. ;)

As for me, I am becoming convinced that I am developing Dementia too. Is this common when you live 24/7 with a person who does not know night from day, confabulates persistently, and renders you unable to distinguish between fantasy and fact?
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @Wifenotcarer
given your circumstances, it's not surprising that your own health is under strain, you've so much on your plate

stress, even depression, and low levels of some vitamins can create symptoms similar to dementia, so maybe stress is taking its toll - might you have a word with the DN when they visit and go have a chat with your GP,
- a check up may help put your mind at rest
 

AliceA

Registered User
May 27, 2016
2,911
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@Wifenotcarer, this is difficult, I do wonder sometimes about my own memory! I mentioned to a GP who said it was just because I was holding everything together.
So indicated it was just dealing and thinking for two.
Certainly I am feeling signs of stress of just the sheer complexity of caring.
This is not to say do not get yourself checked out but many things have similar symptoms.

This is about the anniversary of moving here, so contracts need attention, phone, insurance, power. I am finding it harder at the moment.
So from the pot calling the kettle black, be kind to yourself.

When I was married I heard a tip for when a visitor was about to call, clear the table, give a quick spray of polish and the place looked and smelled clean! the idea makes me smile. Take care xxx
 

doodle1

Registered User
May 11, 2012
257
0
Hi there
Just wanted to add a gentle hug for you. I honestly don't think you are getting dementia , rather look up how to torture somebody and the results. What you are describing is what some of the nastier intelligence agencies do to people to make them give in. I do however think you need a break . I don't know how achievable respite is from your earlier comments but it is so important that you keep your sanity that maybe accepting less than perfection in terms of a respite home might mean you both survive. I also think that family need the truth ,no protecting ,no sugar coating.
Dementia sucks the life out of any room. I have been the sobbing wreck. Don't think it's your fault .it isn't. Another hug.
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Glad to report that today has been a GOOD DAY. Wednesdays are OH's day at day care, when I do the weekly food shop. Firstly I met a very old friend in the supermarket. Had hugs and good catch up chat. Home with the shopping and then another old friend arrived to take me on a jaunt to a Garden Centre to buy some plants and have delicious lunch - her treat. No sooner was I home than SW rang to say that the Friday has become available for respite, so OH is now booked for the full 3 nights and I CAN go to the conference Whoopy Doo!! Then after Tea Daughter + Grandson arrived to 'Grandpa sit' while I went to Branch meeting, where I met yet another friend who I have not seen for months.

OH was not best pleased when I arrived home, convinced that I had been away for hours 'wandering about in the dark'. Daughter said that he had not sat still for 2 minutes while I was gone, constantly searching the house for me and demanding that either he or our daughter should go out and look for me, though he had been told over and over where I was and when I would be back home. He shouted at me a bit and then went off to bed in a huff and has not been back up at all this evening.

Result - I have had a great day, Daughter has seen what I have to endure every evening, I have had peace for a couple of hours and OH will, undoubtedly have forgotten all about his anxiety when he wakes up in the morning. :)
 

bmca

Registered User
Nov 11, 2018
29
0
Well, decision made at last and we are going to give the catheter a try. District Nurse says she will come 'someday' this week to fit it, so trying hard to keep the house reasonably clean and tidy, as she has stressed the importance of 'hygiene' when dealing with a catheter.

Been having really foul weather (Snow, wind, rain) this past week which prevents us getting out in the garden and lowers the mood. I'm really not feeling great myself, my own short term memory is poor and I cannot concentrate on anything, probably due to OH's constant interruptions. He is still insistent that we 'have to go somewhere this evening'. This starts about 4.00pm and goes on till say 10pm. He goes to bed around 8 but is up and down every quarter of an hour, sometimes with day clothes over his PJs sometimes stark naked, convinced that we have somewhere to go, or, alternatively, that it is morning and we need to be up and dressed. Classic Sundowning, I suppose. At least he has stopped demanding to go HOME all the time, so we have a bit of variety in his obsessions. ;)

As for me, I am becoming convinced that I am developing Dementia too. Is this common when you live 24/7 with a person who does not know night from day, confabulates persistently, and renders you unable to distinguish between fantasy and fact?
I had considered a catheter for my brother [doubly incontinent] but was worried about infection so I opted for a convene. He can wear it day and night.This is brilliant. His wet sores are healing and he is more comfortable. Haven't found any problems with it yet but he's only been using it a few days. anyone else used this and if so any problems I should be aware of?
 
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Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
I'm so gład you have had a positive day. I hope the night was a peaceful one.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
My OH had a catheter for a medical issue - OK to a point, but he insisted on emptying the bag himself, and then for got to close it off, so of course, the thing just drained all over the bed!
He then decided for himself to pee into the bathroom wash basin rather than the toilet - which he still does. I do not like it, as we have only the one bathroom and no alternatives that he will agree to....

such is life
 

Wifenotcarer

Registered User
Mar 11, 2018
341
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77
Central Scotland
I'm so gład you have had a positive day. I hope the night was a peaceful one.
Thank you Izzy. OH woke at midnight as I was going to bed, so I was able to give him his pills and a drink of milk. Thereafter both of us slept all night and up this morning bright and cheery and as predicted, he has no memory of yesterday's events. Sometimes an angry outburst does clear the air and thankfully is soon forgotten.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Now it’s a catheter! OH had urine retention and as he has CKD a trip ( 10hours) confirmed the need for a catheter!
No real choice. no clear explanations. And of course OH fiddling and confused.
Awaiting DN for advice , hopefully soon.
No idea how coping with this will pan out!
Rock bottom.......now in despair!
Just another day in paradise!!!!!
 

Helly68

Registered User
Mar 12, 2018
1,685
0
It is very hard, if it isn't one thing its another. My Mum had to have a stoma after emergency surgery and initially she hated it and tried to rip it off all the time. After a while, and underwear suggested by her care home, this did stop and she became calmer. Although the surgery left her very confused and agitated she has since calmed and become more accepting. I hope the DNs come soon - in my experience they are very helpful.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
OH has urine retention and has to have a catheter. It is not an easy thing to deal with. OH has an intermittent disposable catheter that he is supposed to be able to do himself :rolleyes:. I am doing it, which I didnt want to have to do, but hey (shrug). OH is at least compliant and will let me do it. I feel for you @Lady M
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Haven't been on here for ages. Not because everything is Hunky Dory, just seized with inertia, coping one hour at a time, mentally and physically exhausted. Still waiting for the catheter and bag to be fitted. District Nurse supposed to be coming to the house to fit and 2 carrier bags of paraphernalia delivered by the pharmacy. This week a call from District Nurse to say they are one Nurse down and can't fit in a house call, make an appointment at the practice's other surgery in another town. Phoned up for appointment, nothing available until 8.40 pm on 1st April, next available 19th April!!! Explained the difficulty of getting OH there at that time but had to accept the 8.40 0ne. Next thing that happens is the driver's wing mirror on the car gets smashed by a stone, not supposed to use it until fixed and part yet to arrive at garage.

Daughters and Grandbairns are off to Cornwall on holiday, leaving Sunday and sister also off to her family for a few days on Saturday. The logistics are beyond my powers of reason ATM.

Meanwhile OH acts like a crazy person, constantly wetting and hiding his clothes, taking his hearing aids out and losing them and his glasses, shaving 3 times a day, checking the car and doors umpteen times a day, locking and unlocking them. Last night after I had taken out the hearing aids at bed time and handed him his pills and a drink, he put the pills one in each ear. Thankfully, he did not push them right in and they easily fell out.

Not really looking for suggestions or sympathy, just writing this down to clear my head.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
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 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.

Sorry I know the post re hearing aides was ages ago - but I need to mention hearing aides - most hearing tests are not suited to people with dementia/ their responses are too slow! My husband had supper expensive hearing aides just before I realised he had dementia - we just gave up on them when I realised how hopeless the tests were - and yes ! He goes hear better without them !
Hope you are going ok - best wishes MJ
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
So - after a very restless night, got up dressed OH and off to the surgery by 8.35. 1 student Nurse and another 2! to supervise fitted the catheter and bag and showed me how to attach the night bag and empty both bags, etc. No sooner arrived home than OH said he needed a pee. I explained the need to leave the bag etc. alone and let it do its work. He was back in literally 2 minutes with the same 'needing a pee' and so it has continued all day so far. He did nod off after lunch, so I sat down for a rest and unfortunately nodded off too but only for 5 minutes when he woke me, with trousers and pants down trying to remove the catheter, which fortunately seems to be still in place. Two attempts at getting to the toilet while I have been typing this.

Now I'm wondering how to cope during the night. Will I have to stay awake all night? Too late now to get an alarm to alert me if he gets up. Any ideas?
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
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,