I don't trust the NH professionals at the moment

[Roses40]

My mam and dad have been carers for each other for many years. My brother and I have dipped in and out of their lives as and when necessary. I moved into a private rented flat next to their council flat two years ago. The last year has been very difficult to cope with mainly because of sleep deprivation.
These are some of the problems they face.

MAM

Unable to follow conversation
Unable to dress if buttons and zips are involved
Not washing
Increasing number of falls
Put teabags in the toaster to make toast
Can't work the washing machine
Can't follow TV programmes
No concept of time once the sun goes down ( daytime also now)
Gets up and dresses thinking it's morning several times in a night
Can't remember most of what happening on a day to day basis
Doesn't use the walking stick she has used for years
Falling more often
Often confused as to whereabouts of others
Emotional empathy has switched off
Vulnerable mental health for decades
Medications including CD drugs for osteoarthric pain and antidepressants
Difficulty staying upright in a sitting position
Not heating microwave meals enough

DAD
Hallucinations I.e. Seeing dogs or a woman or hearing music
Thinks that people are talking loudly outside his bedroom window
Forgets we were at the bank and wants to sort out accounts again
Thinks someone taking money out of bank when it was him
Verbally aggressive and controlling.
Barely mobile falling more often
Tries to cook but not safely, i.e. Dropping pan of hot food, leaving electric rings on with cloth on it. Forgets a pan is on or something in the oven
Threatening to accidentally hit me with a baseball bat
Macular degeneration can not see more than glimpses

On the 1/1/2015 dad was very poorly and went into hospital, where he is at the moment. Mums dementia went into a rapid decline not because he was in hospital but incase he came home. Two weeks ago mum had a UTI (hard to believe the effect this has), she is now on the same ward as dad.
At the meeting with Drs it was explained that he has a problem in his brain where some blood vessels have collapsed and his swallow is affected. He pulled out the first feeding tube and tied knots in the second one to prevent feeding. My brother and I agreed with the doctors to let nature take its course.
Last week we had a best interest meeting with the hospital SW, physio and OT. Dad has been found not to have capacity (he wants him and mum to go home where he will look after her). Mum was found to have capacity and they wanted to sent her home with carers coming in during the day.
This was the point when I howled and cried because I have reached the point where I can't do it anymore. But what happens at night, say I, that's when I need help. Silence. I should have walked away years ago I say resentfully. Silence
They will send dad to a CH when an assessment bed becomes available (we have no financial assets but dad brother and I have about 130 years of working life between us albeit always in low paid jobs).
My brain is reeling, looking for solutions. I'm talking to one of the nurses and thinking if mam goes in a home maybe I can cope at home with dad. Next morning I get a phone call from the duty SW at the hospital saying dad is coming home the next day but he's not sure if he can get carers in that quick but he will let me know. Later that day the OC rings me asking questions about the home environment etc. I thought dad was going into a home, says I. Next morning dad is all packed ready to go home. My brother and I go to the SW office and ask what is going on. A different duty SW says he can't go home and the best interest meeting plan should be adhered to. She tells us that both are waiting for an observation bed at a CH (is that the same as an assessment bed?).
Dad is furious, he tries to strangle me and calls me some dreadful names.
I hate this dementia journey x

 

[Onlyme]

It does sound as if a ward clerk/Dr has taken his word that he can look after himself at face value and pushed through the discharge.

I'm afraid you are going to have to watch they don't try again. Have you removed his house keys so he can't get into the house?

Just when you think you see a little light in the tunnel some idiot puts it out.

 

[Roses40]

Thank you for the tip about the house key. I thought no capacity meant they couldn't send him home. Have I got it wrong?

 

[painterman48]

NHS Professional?

My mother had been suffering with all the classic symptoms of dementia for 3 or 4 years, most of the descriptions the OP includes in the list above, being exactly the same in her case.
There was never an official diagnosis in the early stages, it was difficult to convince mam to see someone due to having developed a great fear and mistrust of the health service. Whether or not that had something to do with the condition that had cruelly beset her I don't know, but that mistrust is now something that I too, have a major problem with!
From the outset, dad decided it was his duty to care for my mam and did so with tremendous effort. Although both my parents were the same age (85), he did a sterling job, helped by myself although during the daytime I went out to work.
I've always lived at home so wanted to be on hand as much as possible, even contemplating leaving my job but dad wouldn't hear of it.
I don't know how he found the strength yet she was the love of his life and he would have done absolutely anything for her.

Four years ago my mam had a scan due to various health problems she was having. As a result it was discovered that she had a 'mark' (as described) on one of her lungs? Also a very small tumour was found (although very nearly missed) underneath one of her breasts.
She underwent a month long treatment of radiotherapy for the lung problem and along with that, was prescribed medication (in tablet form) for the tumour.
The doctors, (or whoever) were pretty confident at the time, that all would be well.
We took mam for the radiotherapy treatment every day throughout February 2011, sadly she wasn't quite sure what was going on and she used to say 'they don't do anything, just lay me on a bed for a few minutes and that's it.'

For the next 3+ years, we took mam to regular consultations, the feedback from the hospital always being positive. She missed one or two visits later on as she felt unwell and just wasn't up to going. We were never going to take her against her will, so we always contacted the hospital to inform them we couldn't get there. There was never a problem at their end.
On the various visits, dad always went into the consulting room along with mam and I asked him if they ever did anything...blood tests, x-rays, examinations, scans or whatever? His reply was that none of those things ever took place, all the consultant used to say to mam was that she was doing ok and they were pleased with progress.
It's beyond belief that anyone could diagnose someone's state of health simply by chatting with them alone?

Going back to the Dementia mam was clearly suffering from.
The situation seemed to be getting worse. She often didn't recognise my dad, also forgetting who I was on a couple of occasions and spoke about visiting her mam and sister who she hadn't seen or spoken to for several days? Her mother actually died in the mid 1950's, my aunt passed away in 1998. There were many instances like that, albeit very numerous to mention here.

On August 22nd last year, mam had to go into hospital. A doctor visited our home a couple of days previously, becoming very worried about her state of health. Apparently
her heart rate was at a dangerous level and she needed urgent attention. Mam was going berserk at the thought of going, there was even talk of her maybe needing to be
sectioned and taken against her will, as the ambulance crew etc. were extremely worried, repeatedly saying she needed to go asap.
The experience of seeing my mother react in the way she did, will stay with me forever.
It was horrendous to witness the distress and anxiety she was suffering from. What were we to do when these so called experts were telling us it was imperative that she had to go into hospital?
I'll never forget the journey travelling with mam in the back of the ambulance, she was screaming at me to take her back home as there was nothing wrong with her.
Once we arrived at the hospital, mam did calm down after they took her vitals but every time a member of staff approached/touched her, she went off in exactly the same way. It was so out of character for her and extremely disturbing to see her going through it, dad and myself couldn't believe it.

Mam was taken onto an acute assessment ward where she remained until Monday 25th (bank holiday). They didn't seem to have much of a clue what was going on, there was no urgency with them and did very little to help her. It was mentioned that she could possibly have a kidney injury and nothing else, although I do appreciate that is a quite serious problem in itself.
She was then moved to another hospital and put on a 'medically elderly ward'.
Every moment we were allowed to visit, various members of my family were there.
I myself was quite disturbed by the attitude and overall mood of the staff in the place. The reaction I was getting in answer to my questions was continuously unprofessional and at times quite rude. When I explained that dad and I were finding it difficult to get mam to eat, the answer I got from a SRN was 'well if you can't get her to eat, what makes you think we can, we don't force feed people you know'
I was quite disgusted with that remark, we were in a hospital after all. I'm no doctor by any stretch but thought, surely there has to be something they can do?
I became very worried about my mother being in there! I wanted to report the nurse but my older brother talked me out of it.
I got sick of being told my mother was 'just another patient on a list'

Again, each time someone tended to mam, she reacted in a very volatile, stressful manner. She was absolutely terrified. They moved her into a room on her own , I believe due to the other patients becoming disturbed by her distress?
Although it was obvious mam was very sick, a physiotherapist came into her room on the second morning she was in there to try and get her to take a few steps! Unbelievable and as I saw it, a way of seeing if she was fit enough to go home.

The staff at the hospital 'had' (so they said) to tend to mam every 3 hours, turning her and checking to see if she was clean. It was very clear she was getting worse and I believe this stress and anxiety was having a terrible effect on her state of health.
Who was I to question their supposedly tried and tested techniques?
It was also clear she was being sedated to keep her quiet, there was very little movement and coherence from her on many of our visits.
She wasn't eating much at all and taking fluids by small sips only. The hospital didn't appear to be doing anything for her or giving her any medication at all.

After almost a fortnight, the hospital decided to give mam a scan. They told us it was to either confirm or deny whether dementia was present?
It turned out it was actually the case but something far more sinister was going on too.
It was discovered that cancer cells (metastases, we were informed) had developed in and around my mothers brain, the prognosis being that it was aggressive and there was nothing that could be done for her!
The horrendous result being that we were now going to lose someone very precious to us all. The only thing they could offer my mother was 'end of life' care!
It was unreal how the room my mother was in, suddenly became very stripped down
almost immediately!

Social services stepped in, it was their role to now organise something as we decided the only place for my mother, was for her to come back home where she belonged.
She never wanted to leave home in the first place but there seemed to be no other option at the time.

Mam came back home to us on 10th September, she very tragically passed away just 2 days later.
Nearly 6 months since that day, I am still grief stricken by the loss of my mother, she was so special to me. I'll never be able to adjust to her not being here, the pain will never go.
I worry constantly about my dad, how he is dealing with all this is beyond me quite frankly.

In closing, although my mother was told by so called experts that she was doing ok, it turns out she wasn't!
The treatment she received for the problems she had, simply did nothing at all and she became the victim of a disease that had taken a terrifying hold on her, yet apparently was allegedly being kept in check.
What the doctors/consultants were telling her was actually very wrong and they failed!

Something that my father found very disturbing and upset him greatly, was the reason given for my mother's passing on her death certificate, was 'old age' with a secondary description being lung cancer and breast cancer! For me, it was a kop out!

She may have been 85 but despite her declining health, my mam was as strong as an ox. After being carried out of her home fighting like a lion, on her return she was like a fragile lamb.
Although my mother was discharged from hospital, as far as I'm concerned her life ended due to her being in there!

General hospitals are not fit for purpose when it comes to taking in dementia sufferers!
Maybe it's a little harsh for me to say they don't care, but like in my mothers case, they simply didn't care enough!

 

[Mrs C]

Johns Campaign

Please go to Facebook page or twitter this is a campaign to let carers stay in hospital with loved ones with Dementia. this was started by Nikki Gerard whose dad was a Dr with dementia.
I also had many complaints regarding the N.H.S. at the moment I am waiting on the result of an investigation and then I will take my complaints to the ombudsman.
I must stress I am not looking for compensation I just want an apology for what was done to my partner who died at the age of 60 at the hands of the N.H.S. I want to see written recommendations that this should never happen to anyone else.