[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Good Day/Bad Day - Carers UK Forum

Good Day/Bad Day

Share information, support and advice on all aspects of caring.
Hi for every good day there is a bad day my husband on Friday night 22nd did have a few hours sleep more than usual which in turn gave me some also which was really good as the next day Saturday i felt able to function better however lo and behold last night was a disaster he was up all night wandering the house/rearranging things/lights on in every room/walking to the front door and back again reason being i obviously lock the door every night and take the key up into my room/the spare bed(where he more than often sleeps as he cannot settle in our bedroom)so his quilt/pillows/sheet where all rolled up and stacked into the corner of the room regardless of me making the bed for him over and over again/toilet roll sheets laid over the floor in different rooms and so on as i said a bad day that is why i am now on the forum this time in the morning as it actually gives me a little strength to carry on i really do not mean to sound like a moaning person as i am fully aware there is others far worse but when your sitting as i am now i feel totally shattered and ever so alone because there is no end in sight its just like a vicious circle :(
Morning Susan
So sorry to hear you have had such a traumatic night. How is your husband now? You really cannot go on like this. You will be ill yourself.
Is there any help you can get today?
It's awful feeling so alone when a loved one is behaving so bizzarely. My husband has vascular dementia and suffered strokes. Had several UTIs before he was diagnosed. Some of his behaviour was very odd . It still is. He is in a nursing home now. Safer for him and me although very heartbreaking. I have my family,but I too can feel very alone.
I'm not implying your husband has dementia but obviously something needs to be established
You take care x
Susan, you really CANNOT go on like this. I suspect that whilst you "soldier on" no one will listen to you. So tell the GP bluntly, that there is something drastically wrong that MUST be investigated as a matter of URGENCY. Tell your own GP what a toll this is taking on you. Most of all, gather evidence, because a picture tells a thousand words. Take photos of anything which is bizarre, the bedding in the corner, the paper over the floors etc. and then ask them if that is normal behaviour, if they (ie doctor or social worker) have ever done that themselves?! Keep ringing SSD and tell them that you will ring every day until they get on and DO something. Insist that someone from the Carers Support Team comes out to see you immediately. I know their understanding of urgent is different, if you say it's non urgent that might mean weeks waiting. We are all here for you.
Thankyou pet66 and bowlingbun my husband is at present moment in time up just had his breakfast but obviously muddled as to whats going on and whats happening until he gets aware of his surroundings then he becomes a little more coherent.I visited the doctor on Friday as i said and yet another wasted appointment she did try ringing pschy unit he was in also the cpn community number that was given to me when he was discharged from the unit to no avail they didnt want to know and she was told ring the crisis team those who treat my husband basically without sounding too awful(like some kind of freak)and never helped any way what so ever to the point i do not even want them in my home at all.I am thinking on the terms of dementia myself pet66 as all i read up on it actually does point to my husbands symptoms more and more i cannot rule it out ,i know within my heart i need help asap and have to as advised ring the adult social services team again tomorrow plus the carers support association as this is not on just coping and literally going through the motions until the appointment with the nuerologist in two weeks time i basically have been told in a roundabout way am lucky to have gotten an appointment with them so soon and with having no diagnosis by anyone so far its just a waiting game to see what they have to say you know its very easy for those to give certain advice when it isnt them going through all this i feel its a case of put up/shut up and get on with it until your appointment :angry:
Susan. It's too long to wait for both of you!
Does your husbands behavior seem worse in the evenings? This is known as sundowning. For some reason the odd and difficult behavior rears its head more during the evenings. Medication helps.
As BB advises, you will need to be demanding. Even to calling an emergency services. A couple of times I said to my husband I will have to call an ambulance,but he made me feel ridiculous for even thinking of it! I should have listened to myself. Too late for that regret on my part, but please don't let yourself fall into that trap.
Calling an ambulance may be the only way to get anything done. Next time something desperate happens, consider calling them. Then they can see when he is at his worst, because it doesn't really sound as if anyone really understands just how difficult it is for you.
Hi in answer to your questions pet66 and bowlingbun there is actually more odd behaviour at night and funnily enough i have just been reading about it being called sundowners it is all these symptoms that i see in him makes me think more and more towards dementia,well it just so happens a few weeks back when he was having a really bad spell i called that crisis team in reluctance mind you but i was desperate and when they came out after about two hours of waiting and numerous phone calls to them they called an ambulance he was taken to our local hospital and they done all the usual tests blood/urine/heart monitor etc etc all came back negative then a doctor came to see him asked all questions which seemed unreal at the time and basically you could tell he was not interested to be bothered was as though other important stuff was going on and he wanted to get on with them so result being we where left in a room which was boiling and just getting my husband more agitated to the fact he was keep wandering in and out up and down the corridor so this resulted in a nurse having a word with this doctor so he came back and told us he was discharging my husband to which he said to him you go home let your wife take care of you and dont give her a hard time and that was that back home i took him and it was only when i phoned the out of hours social services team and broke my heart to her on the other end that she looked into things for me which resulted in yet again two people coming from this crisis team and assessing my husband that he was capable of admitting himself as a voluntary patient to a pschy unit which he did and i hated him being in there that place was not for him after seeing some of the patients in there he was tried on various medications some had terrible effects on him it was awful to see the change sometimes in him when i went at visiting time every time i broke my heart eventually they allowed him out for home visits then he was discharged because the doctor there was adament he had calmed down with the odd behaviour a bit so would be better at home i was told him being in there would speed the progress up of all different tests to be done on him plus getting to see the neurologist would be pushed through none of these things happened and truth is i believe the bed was more wanted for another more deserving patient that was the gist i got and i never want him in a place like that again so was relieved in a way he was discharged however now back home he is getting worse so you can understand why i dont hold much faith with certain medical professions :(
I could also write a very long book about my experiences with my son - for 8 years I was labelled a "bad mother" despite the fact that I used to run a Brownie pack of 24 single handed and my eldest son was perfectly behaved and exceeding his milestones. It took a doctor from a private school to talk to him for under 30 minutes to say he was brain damaged at birth. It had been an awful birth, legal investigations revealed that the midwife was unqualified without supervision, but nothing on the notes for 2 hours meant it was impossible to prove negligence, so no compensation! So I quite understand your distrust of the medical profession. Doctors didn't realise my husband had a major heart attack, thought his symptoms indicated arthritis, but then he died of a massive heart attack!!!
However, the only way you are going to get a proper diagnosis is through the medical profession. Could you possibly afford a private consultation? This might be the easiest way of getting a diagnosis without waiting, especially if a brain scan is required. From my experience of private medicine, when I was expected to wait too long by the NHS for a diagnosis, is that you see a top specialist from the NHS hospital, so the same person, but what you are buying is his time. Maybe a couple of hours rather than a quick check from an underling.
I too could write a book or at least a very long pamphlet! Hubby had a dementia test, and he answered all of the questions correctly,except for saying it was 1980! I had written to his G P explaining my worries. No, he hasn't go dementia symptoms said he!! Well he did have the symptoms and sadly he has dementia.. I knew somewhere deep down he had. It was the last stroke that had speeded up the onset.
I so agree with BB about a private consultation if you can afford one. The tests and scans will be thorough .
If you ,can't and your hubby is hospitalised again,fight very hard about taking him home until proper tests have been carried out. I understand only too well it's not what you want but your husband is also a very deserving patient. People have been known to refuse to take a loved one home knowing the situation will happen again. It's not because they didn't care or love the family member,its because they DID.
oh dear! having just managed to get cross with my lovely but completey physically disabled husband for needing the wee bottle for 4th time this am, and him lying on the bed as he seems tired after weekend visiting aged father in law ( husb in early 60s with neurologiacll condition) , I now realise I should NOT grumble, reading what you have to put up with. Then I realise you should NOT have to put up with life as it seems for you.
You definitely need to get some sort of care in place, perhaps a personal assistant who can take over from you for a few hours, some respite ( how hard to get loved one to go into respite), some daily care so you can go out for quiet coffee or have a nap. it sounds like you can have no life of your own and that is completly unsustainable, as you will collapse sooner rather than later.
Do you have family who could come and hold the fort for a few hours regularly until you get paid for help in place?
Go and see GP and get him/her to refer you VERY URGENTLY to SSD.
perhaps ask for direct payents, so you can organise our own care on an as and when basis, if you think thatmay help
Get a diagnosis or your husband, as it does seem to help if you KNOW he has something really wrong, other wise it comes down to him being a stupid man etc etc ie a blame game.
even if chaos downstairs try to shut your self off away from him for aa few ins at a time, even if it is just a quick walk into the garden, or a page of a book. all hels a little to reduce the stress.
finally please do not let it go on any longer otherrwise you'll be dead or in a psychaitric institution.
with love L