discharged from memory clinic

[Lilac Blossom]

My husband was diagnosed Vascular Dementia approx. a year ago - he has never been prescribed any medication. I was told that a Post Diagnosis Link Worker would visit on a regular basis (probably monthly) for one year. A month later we had first visit and her first words were, this is the first and last time you will see me as I have handed in my notice - going to work in Glasgow. We are North Scotland. The job would not be advertised until she had actually left. I phoned last week to ask if anyone is in post yet - oh yes, but she has all the training courses to do. I guess we'll never see her as the year will be up in the next week or two.

I got the impression that it would have been very helpful.

 

[Frank68]

HelloTre,

I have just found your post. I live in Herts and my husband has just been diagnosed with AD & dementia. We have had some problems but I cannot seem to get any help from the Memory Clinic. Could I ask you who would be a useful contact, all I am told id 'phone 999' when he is having a temper tantrum.

I just feel we have been abandoned, there does not seem to be any care for the carer does there.

We are fortunate in that my wife has a smashing GP. Only problem is she is so good that there is always a long wait to see her! But when we do she is lovely with Sue and me, we come away after a really good chat feeling heaps better. Finding a good GP is, IMHO, perhaps the best route around here for consistency of real care and interest.

Do you have a Memory Cafe near you? Went last month for the first time and that was excellent - info and support from a good Altz Soc worker and from peers, plus wife and others entertained for an hour: bliss!

Re the Docs: I worked in the NHS for a while and did some training for Junior Docs and Registrars around bereavement and death issues. This was unusual, was "fitted-in" to their induction schedules so it was necessarily brief and very basic. It is such a pity that this whole area is taken so lightly and we need to remember that doctors (and nurses) often receive little training and generally little support in what is often a difficult and painful task. Not easy breaking bad news, nor being helpless in the face of a patient's problem to which there is no solution.

 

[tre]

hello Unhappy 15

Certainly I have not found the memory clinic particularly helpful although the nurse we saw last Monday was nice. Basically it seems that after the initial contact, other than doling out the meds you are on your own. Having said that the nurse said she would chase an appointment with the consultant for us. We are lucky in that the consultant has kept my husband on the list. With my mum ,who had vascular dementia, the attitude was "there is no treatment so we will not see you again" and then we were abandoned by the consultant.
My mum died four years ago ( 4th Feb 2011). My husband was diagnosed in Jan 2008 and having been in the system since then I am a bit more clued in as to what you need to do to get help.
We are in East Herts. There is a monthly carers group run by the Alzheimers Society which is very helpful- a lot of which is from info/tips gained from other carers as to what works and what does not and being with a group who understand the difficulties.
Also I have help from Carers in Herts in the form of a mentor which again has made a big difference.
I would recommend you give this a try. I am on my own and have no family to help. It can be a very lonely place being a carer.
I also think, in a way, I am fortunate that my husband has one of the rare dementias, posterior cortical atrophy (PCA), as we have access to an excellent support group in London.
If the memory clinic is proving useless for you then another avenue to try may be to ask for a carers assessment for yourself.
hope this helps,
Tre

 

[malcolmpr]

clinical trials

I was diagnosed with Alzheimers last July - I'm 58. I had to nag and keep ringing for an appointment with my memory clinic. I eventually got one but it was a struggle. I've now put myself forward for clinical trials and you are looked after so well with phone calls and follow up visits and checks galore. It also makes me feel useful and making a contribution to the search for a cure to this cruel disease. Think about signing up to ' Join Dementia Research' database. It's a new database on which you can express an interest to takepart in research - fully backed by the Alzheimers society.

Hi Wendy
My wife Susan is also involved in the clinical trials for liraglutide which I prersume is the same drug as you are involved with. i agree with you the attention she gets is top drawer.I have just given her her second jab of the drug or the placebo. I hope that it is the drug but even it is the dummy like you she is making a contribution to finding a cure.
Keep in touch
Malcolm

 

[Scarlett123]

How sad to see that it is still so difficult for folk to get the help they so desperately need, and, worse still, to see that it is such a post code lottery.