Husband is newly diagnosed-but I told the local medical services he had it six years ago!

annieka 56

Registered User
Aug 8, 2022
346
0
That is exactly the same experience we had with my OH. When we moved here, he already had a diagnosis from where we used to live in an EU country. I brought the medical records and test results with me. He had an appointment at the Mental Health Unit, presumably to check his diagnosis and meds were correct. He had a scan which confirmed his previous one I brought. A follow up visit from a community psychiatric nurse who gave him a test - which was easy for him. I was told to leave the room during this. I was told when they’d finished that he was doing well, seemed fine and no need for her to come again. That was back in around 2016. Since then, zilch from anybody. Must definitely be a postcode lottery, I’m amazed at the visits and support some other people seem to have.
 

hillyjay

Registered User
Jun 14, 2019
189
0
Doesn't anyone check his medications though? GP or the Mental Health Unit?
Nope. Though he was called for a ‘healthcheck’ at the GP surgery the other week, conducted by one of the nurses there. She asked him how he was managing. Did he feel he was about the same or a bit worse? That was more or less it. Medications - he just keeps on shovelling down the ones he’s been on for years.
 

annieka 56

Registered User
Aug 8, 2022
346
0
Nope. Though he was called for a ‘healthcheck’ at the GP surgery the other week, conducted by one of the nurses there. She asked him how he was managing. Did he feel he was about the same or a bit worse? That was more or less it. Medications - he just keeps on shovelling down the ones he’s been on for years.
 

Foundagoodbooktolivein

Registered User
Apr 28, 2024
14
0
I read your original post and it had taken 6 years to get a diagnosis which in itself is frustrating and stressful.
Sorry to hear you are dealing with anyone who is rude and pushy.
Is it the actual Mental Health Nurse? ( My husband's nurse comes occasionally to check his medication, then he's discharged when stabl e, then re referred when not...)
could it be a social worker attached to the team maybe?
There have been 3 to date who have come to visit at home.
One initially referred to OT for hand rails etc
When more care was needed the second one requested a financial assessment. This actually took 5 months to happen. By then my husband had needed 4 weeks respite (aka the best month of my life in 8 years...!)
My husband was noted as self funding because a financial assessment hadn't taken place. I complied fully with the assessment when it eventually happened involving sending 3 months bank statements, proof of pensions etc I honestly thought someone would question how many times I ordered from Amazon! Obviously not, they were looking at his income and proof of his zero savings.
Unless you/he can fund it all then you should just do what needs to be done really. And it doesn't need to be done face to face by someone who comes to your house.
I would try to avoid getting discharged and not considered in need of help or support otherwise you will be back to square 1.
Many thanks for your reply. I would so much love to go on holiday, but it would have to be without my husband who doesn't cope with anything. I am hoping the road ahead isn't long because I have been looking after him as his carer for more than thirty years now. First it was his lungs, (he only has one due to bronchiectasis, then it was severe depression for which nothing useful was done by the NHS, then in his 40's he began with the hiding away and unwillingness to stand up to other people or go out anywhere, then it was rheumatoid arthritis and complete deafness. He so much hated the woman Rheumatologist at the Hospital to whom his case was assigned, he wouldn't turn up to see her and during the pandemic, his feet distorted so badly they are now all broken down in sores. We live in the cheapest housing area in the country and if I put him in a nursing home, I will be left with a tiny bungalow in the middle of nowhere with a huge garden I can't afford to pay anyone to look after. I am crippled with spinal arthritis and partially sighted - I just don't see how, if they take my husband's share of the property off me, I will ever be able to afford to buy anywhere else to live and I couldn't manage to run this place without his financial contribution, so I will be left the wrong side of 70, going blind, homeless.
At £1000 a week for a Nursing Home for him, I would find it very expensive to go on a two week tour to Italy which is what I want to do. I am losing my own sight yet stuck at home with a horror who can't hear, shouts at me, chucks things at me and generally behaves like a silly kid. He screams at me that he "hates all women." I don't know where I should take him, and I don't want the psychiatric nurse to have to put up with him either! He'd figured out she was coloured from her name and he particularly wont put up with that, (I personally didn't mind but didn't want the nurse insulted in front of me in my own house, as it's too embarrassing! I try very hard with his behaviour, but it has not been good since he was in his 40's and I think the Alzheimer's has been coming on all that time. I had a private scan done in another County because my husband didn't believe his Alzheimer's diagnosis and thought the local medical people were trying to trick him out of medical care he needs by saying it is only Alzheimer's, (they openly say they wont treat anything else wrong with him because he has Alzheimer's - not fair in my view as in pain, is in pain and they should still look after him.) It showed he is Stage 4 Alzheimer's but I'm not sure what that really means. When I tried to discuss the prognosis with the psychiatric nurse on the phone, she was unwilling to answer any questions, just banging on and on about a silly memory cafe for someone who is totally deaf! I didn't really feel she was intelligent enough to help and asked to see the consultant again, but this was refused.
 

Foundagoodbooktolivein

Registered User
Apr 28, 2024
14
0
I read your original post and it had taken 6 years to get a diagnosis which in itself is frustrating and stressful.
Sorry to hear you are dealing with anyone who is rude and pushy.
Is it the actual Mental Health Nurse? ( My husband's nurse comes occasionally to check his medication, then he's discharged when stabl e, then re referred when not...)
could it be a social worker attached to the team maybe?
There have been 3 to date who have come to visit at home.
One initially referred to OT for hand rails etc
When more care was needed the second one requested a financial assessment. This actually took 5 months to happen. By then my husband had needed 4 weeks respite (aka the best month of my life in 8 years...!)
My husband was noted as self funding because a financial assessment hadn't taken place. I complied fully with the assessment when it eventually happened involving sending 3 months bank statements, proof of pensions etc I honestly thought someone would question how many times I ordered from Amazon! Obviously not, they were looking at his income and proof of his zero savings.
Unless you/he can fund it all then you should just do what needs to be done really. And it doesn't need to be done face to face by someone who comes to your house.
I would try to avoid getting discharged and not considered in need of help or support otherwise you will be back to square 1.
 

steve333

Registered User
Jan 12, 2024
28
0
Memory clinic came and carried out an Addenbrookes Test on my Partner, She became agitated and frustrated because she didn't understand what she was being asked to do. Usual NHS box ticking exercise Psychiatrist diagnosed Vascular Dementia after a 10 minute chat. Still that opens other doors. I am an unpaid carer which I do willingly, alternative is a care home. That's the last resort in my book.
 

Foundagoodbooktolivein

Registered User
Apr 28, 2024
14
0
My husband has actually been showing signs of Alzheimer's since he was in his 40's, (he's 77 now,) and I only became aware of it when I rang 111 six years ago because he was ill with a chest infection. He has always had bronchiectasis and has only one lung due to the disease but his mental strangeness came on in his forties when he suffered depression and made many suicide attempts. The NHS did nothing about his mental condition at that time, in the late 1980's and I do remember thinking it was very odd. So I was somewhat amazed when I rang the 111 in 2018 to be told:- "He's useless, you shouldn't be bothering us about his medical illnesses, he's got Alzheimer's - it's time you put him in a home." The GP maintained for years that my husband had severe rheumatoid arthritis, bronchiectasis, deafness, enlarged prostate, you name it they said he'd got it, but not Alzheimer's! All my husband's hospital treatment for his rheumatoid arthritis, prostate problem, chest problem and deafness has now been cancelled by the NHS because he has a definite Alzheimer's diagnosis. His feet became severely deformed in the pandemic. He had this woman Rheumatologist and he really dislikes women and wouldn't attempt to speak to her on the phone, so he got no anti-rheumatic drugs. He's so very deaf and can't talk much on the phone anyway as he can't hear what is being asked. His feet are now all broken down in ulcers and he cannot walk. I attempted to explain to the Psychiatric Nurse that he is very deaf and cannot walk but all she was interested in was getting him to go to the Memory Cafe. I wouldn't be willing to go to such a place myself and he wont go anywhere without me. I study for hours every day, (French and English Literature,) as he can't hold a conversation, he can't hear well enough. The District Nurses wont come to dress his feet, he wont attend the giggling young cheeky practice nurses about them, and I have to find someone privately with nursing qualifications of some sort to come in and do the dressing for me. The NHS is useless here, but it is an area of cheap properties. When he goes into a home, I wont be able to afford to live here any longer, without his financial contribution. I'm the wrong side of 70 and have an eye disease which will leave me blind eventually. I'd do anything to find a cheap home for him somewhere so that I could do a two week trip to Italy whilst I can still see. I wouldn't have stayed with him, had I know what the NHS was keeping from me all those years.