Husband is newly diagnosed-but I told the local medical services he had it six years ago!
- Thread starter Foundagoodbooktolivein
- Start date
I asked about my OH going to ‘memory clinic’ appointments as I‘d seen mentioned on here. They don’t have memory clinics in this area I was told. Basically, I sit it out and wait and cope and ‘if you feel things are deteriorating then have a word with your gp’. Thanks a bunch.
The memory clinic in my area is only concerned with diagnosis and they do not organise support. Once you have the diagnosis you are discharged back to the GP. It sounds like it's the same in your area.
If there are further problems the GP is the "gate keeper" to either refer back to the memory clinic, or to refer to the community psychiatric team for medication. GPs don't know a lot about dementia, but they can make referrals
Foundagoodbooktolivein
This sounds really upsetting. Please find someone you trust really well. Ask if they will be present during the meeting to give you some support.
The relationship between you and these agencies has broken down before it got off the ground.
I don’t blame you for feeling aggrieved but I am concerned you may be missing out on things that would really help.
I hope there might be such a person.
This sounds really upsetting. Please find someone you trust really well. Ask if they will be present during the meeting to give you some support.
The relationship between you and these agencies has broken down before it got off the ground.
I don’t blame you for feeling aggrieved but I am concerned you may be missing out on things that would really help.
I hope there might be such a person.
Thanks, @SAP. The GP does regular repeat dementia meds for my husband and yes, @canary he can refer to the mental health unit. Both the Gp and the MHU say there is nothing more they can do as OH is already on the only meds available for dementia.
@Foundagoodbooktolivein - I’m really sorry for stepping in and hijacking your original thread a bit.
I’m afraid I don’t have much advice to give you - others on here have much more experience than I do. Hoping this all gets sorted out for you and that you start to feel less scared about your situation.
I'd just like to mention @hillyjay , that there is a difference between drugs for dementia and drugs for the symptoms of dementia. There are very few drugs for the dementia itself, but symptoms may be helped. You mentioned on another thread that your OH is getting aggressive and there is medication for that which isn't just for dementia.
Thanks @canary. He’s on the available drugs to slow the dementia which no longer seem to be having much effect any more. In the previous EU country where we lived when he was diagnosed, I had occasion to mention handling his verbal aggression (which isn’t all the time, only when he feels slighted or I’ve said something ‘wrong’) and the neurologist recommended to our GP there that if this continued she suggested he be put on ‘trazodol’ I’ve never been able to establish what this would be in English but I wonder if it was tramadone here which I’ve seen on these threads - or something which sounds similar!
I have the feeling that if I spoke about this to the GP he’d simply say ‘it’s the dementia’ which is his usual response.
Dementia pathway | Royal College of Psychiatrists
NCCMH-developed documents on dementia care: short implementation guide, full implementation guidance for the dementia care pathway (plus appendices and helpful resources), and a related coding resource (Excel) with SNOMED codes.
I lost all my sight in 2005 and it took many years attending a big Eye Hospital in London to get some of it back. During those years I struggled to keep a home and employed lots of Home Helps. None of them would do two hours work for two hours money, most of my things were stollen because they knew I couldn't see and what wasn't stollen was broken. It was terribly stressful and I will never allow anyone in my house again. If the Social Services keep on pushing me to let them in here so that I have to work all day and all night to keep it immaculate for one of their spies, (that they will force me to pay for, even thought she is really there for their benefit, not mine,) or get my husband taken off me, then I'll leave. Your home is not your home, if you are not ever allowed to do what you want to do in it. The care homes are just palliative care homes round here - even when people still have curable conditions they wont do anything for them if it is Alzheimer, and that is the truth.
I’m so sorry to read of your experiences @Foundagoodbooktolivein
We also had problems finding good cleaners and were stolen from. I understand your anxiety.
what are your thoughts and plans for coping when your husband deteriorates and needs help with personal care etc?
We also had problems finding good cleaners and were stolen from. I understand your anxiety.
what are your thoughts and plans for coping when your husband deteriorates and needs help with personal care etc?
I'm glad I am not the only person annoyed at being asked how much the house if worth before being allowed the appointment at the memory clinic. The Consultant was well up himself and kept us waiting for half an hour before he would see us, then he only saw my husband for 20 minutes. It was supposed to be a 90 minute interview. We did get an MRI Scan but it was in an old scanner in Cambridge and the scanner gave my husband a bad electric shock, burning his right eye and hand. I didn't think the scanner would show any proper results, so I took my husband a long way from where we live and paid privately for another MRI, which showed he has "NPH" (increased fluid on the brain.) It's apparently the only form of treatable Alzheimer's so I am looking for someone who can operate and put in a shunt to help him. I only have a grown up child living miles away, but he does come and see us and help out now and again. At least he makes me laugh. He has a beautiful looking partner, but she is completely useless at practical tasks, and he is wage earner, cook, cleaner, bill payer and sorter out of everything, yet his partner is in perfect health! My best friend would have come for the assessment, but she is terminally ill with cancer.
SS should not be asking about assets before they carry out needs and carer assessments and nobody should have to disclose their assets as a condition of getting a referral to the Memory Clinic.
Which area are you in? Addenbrookes Hospital in Cambridge has a special clinic for NPH if you can get the GP to refer your husband.
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We could easily get there. I will go and plead with the GP to send him, but he is 77, and we have virtually zero medical services left, due to cost cutting here in Cambridgeshire, so I'm not hopeful.
Wishing you good luck with a referral. I don’t think his age should make difference.
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.
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.
