Old Age Psychiatry

No, you are not being unreasonable.

And it is probably due to some stupid Date Protection rule. Ridiculous.

I agree it sounds ridiculous, but they will be worried about breaching confidentiality.
Perhaps you could get your OH to sign something to the effect that he gives consent for the appointments to be sent to you, and the appointments discussed with you.
Whether the computer, and the person feeding it information, would be able to cope with that though is another question.

posie It may be too late if your OH already has a diagnosis, but have you considered doing Lasting Power of Attorney? It's a lifesaver when you have to deal with all these matters. We're having to deal with an Auntie's affairs on her behalf.

Even if your OH has been diagnosed, it may still be possible to apply for it as long as he is capable of understanding what he is signing.

Auntie lives in the NE and we're down South, but we've been dealing with hospitals, Social Services etc from here and - so far! - lines of communication have been really good. In fact, Auntie joked that we know more about what's happening to her than she does!

posie My son and his fiancée both work as psych nurses with dementia patients and it is routine to ensure family members know about treatment, appointments etc. The family need to be involved. There are other Gransnetters with really good knowledge about the care of dementia patients, so they'll be able to say more, I'm sure.

I meant Data protection of course, not Date.

My OH and I worked in Psychiatry before we retired and I have to say, there would not be a problem with informing you posie of any appointment and it would not come under a breach of confidentiality. You should talk to the people involved and asked that it be noted that you wish to be informed by telephone or/and by written appointment. They "should" totally understand why and it "should" not be a problem. I hope it works out ok for you and your OH posie. These circumstances are very hard to deal with and I send you my best wishes.

It is a long time since I worked on a unit for people suffering from dementia illnesses, but at that time we always treated the person as a member of a family, because this was critical to helping support people at home. There would have been no problem in making sure that the main carer in the family was informed about appointments.

It is a difficult area, as the staff of the unit will want to respect the patient's dignity and right to retain control over their lives, but in situations such as this some common sense needs to be used as well.

I am sorry that you are dealing with this horrible illness in your family and hope that you are otherwise well-supported.

My OH has PD and is able to deal with his affairs, but there is some frustration on my part in that he does not wish me to be involved in any of his hospital appointments - difficult because there are aspects of his illness that it would be useful for his advisors to know and which I think he does not tell them; but it is right that he should make this choice for himself. It does make me feel irritated at times, even though I understand the reasoning, as I think they should be considering the impact on me and the wider family.

I tend to go with DH to clinic appointments as he can forget details and has the unfortunate tendency of answering "Fine!"when asked how he is even if has has episodes of being a lot less than fine. I also think an extra pair of ears is useful for afterwards when you try to remember what was said. Plus he can miss things- but I stay well in the background as I don't want to appear to be "taking over" !

posie you are not being unreasonable. We looked after FIL with vascular Dementia and all discussions included us as his official carers. We were very ignorant as to the help out there and were lucky to stumble onto a local charity who helped us access a lot of support.
I'd be inclined to have a word with your GP as to your rights/responsibilities as his main carer. Also the Alzheimer's charity might be a good starting point for help.
Yes, your husband is a patient in his own right but part of his 'illness' has an effect on his day to day life that he will increasingly need help with.
Arm yourself with as much information and support as you can, it does help.

In my opinion it's more a lack of common sense sadly lacking in lots of places than data protection. It just seems to me so obvious to ensure that their patients aren't going to forget their appointments. Even Dentists these days ring beforehand to remind you & you're not going to them about a memory related problem!

The lady at the local Alz society is lovely, she listened patiently to my outpouring on Mon after a bad weekend.

MiniMouse, unfortunately OH has refused to do POA despite Drs, family etc explaining to him that it was a good thing to have in place. He sees it as relinquishing his power & control & nobody can make him see otherwise. It does make things more needlessly difficult for me.

My brother had this problem when living with our mum. As she would hide it open all post. We bought a postbox to attach to the wall next to the door. He had the key so mum could no longer get at the post.

Doesn't alter the fact that your perfectly reasonable request has been ignored but it might help.

It really is odd that they are not responding to your very reasonable request to be kept in the loop. My department many moons ago would not have had a problem with this.

I there a community psychiatric nurse involved (CPN)? They are usually a good first port of call with these sorts of issues.

Oh posie I'm so sorry, that's so hard for you.

I can understand how your OH may feel, but could you approach him by saying that he can have LPA over you (even though you know he wouldn't be able to use it)? That's what my OH and I have done, even though we're both still OK. I couldn't bear to think that my OH or children could be left stranded if the need arose to handle my affairs.

Do you have a local Alzheimers Society? They must come across this all the time and would be able to offer advice and guide you.

posie Just re-read your post and you're already in touch with Alz Soc!

You can also get the correct information on Talking Point Altzeimers. Sorry to refer to another site, but they seem to have all those answers. If the clinic needs to contact my OH, they always speak ask to speak to me, or contact me by email.

Just out of interest, is Alzheimer's a psychiatric illness, or a neurological one?

That's a good question Jings! My father had vascular dementia, so the dementia had a physical cause, but affected him mentally. Alzheimers, I believe, is caused by a change in the brain (physical?), so would that make it neurological?