Feeling lost

[Jannette]

Hi Everyone,

Just wondering if anyone else was feeling as lost as me. My 95 year old mother was diagnosed with Alzheimer's at the end of June this year. Discharged from hospital with an emergency care package - which was very good. Since then I have had to find out most of what I know from forums and websites like this. No one told me that mum should have a CPN assigned to her. I haven't even been told as to what stage she's at. No appointments for follow ups for re-assessments. Nothing. How often should re-assessments take place?

Maybe a simple checklist as to contact names/support groups could have helped. Just feel so lost as to what mum may be missing out on. Feeling a bit despondent at the moment.

Look forward to receiving some advice.

Thanks & Regards, Jannette

 

[Grannie G]

Hello Janette

Welcome to Talking Point.

I`m sorry you feel let down by the system. I`m afraid it seems to be par for the course with a diagnosis of dementia.

I doubt your mother will be entitled to a CPN. They are thin on the ground and I think only allocated to those whose behaviours are challenging. However it does seem different in different areas so there is no harm in making enquiries.

From experience, it seems we have to ask otherwise we will not get. If it is assumed we are managing we are left to get on with the good work. It is only when there are causes for unmanageable concern other agencies become invi=olved.

 

[Beate]

1. Not everyone gets a CPN or a care navigator. We never had nor needed one.
2. No one will be able to tell you exactly what stage as they are fluent and can overlap, plus everyone is an individual with individual symptoms. They really aren't clear cut. However you can use this symptoms tracker to check progress:
http://alzlive.com/wp-content/uploa...-Dementia-Person-Centered-Symptom-Tracker.pdf
3. We get seen by the Memory Clinic every six months, but you can make earlier appointments if you feel it's necessary because someone has changed significantly for example.

I think it's not so much the care aspect that has let you down but the lack of information. At point of diagnosis consultants should be able to give you an information booklet, but it's hit and miss and often depends on where you live.

 

[Amethyst59]

My husband was diagnosed a year ago...and I hadn't even heard of a CPN up until now! But I have used, and found invaluable our local Admiral Nurse...I think it is a national organisation. They certainly have a good website and phone line, even if you don't have a nurse in your area. I've also found Age UK brilliant...and we are currently waiting for assessment for a COGS club. And, of course, the lovely folk here...an invaluable source of help and support.
It is a hard journey you have started, but you are not alone.

 

[Jannette]

Sent home without any information/guidance

Beate,

Thank you so much for this information - I think the form will be a good starting point. I have seen my mother deteriorate since having two falls three weeks ago. Definitely needs re-assessing. Thank you so much.

Regards,

Jannette

 

[Jannette]

Amethyst59,

I too have contact with an Admiral Nurse, who has been supportive. I know and understand that people's time is limited, so I tend to write a load of questions ready for her visit, only to find that I have more once she's gone. There is so much to take on board not just the care aspect but also what mum's entitled to. Having found out that she is entitled to 'free' council tax, which seems quite ridiculous in the grand scheme of things - no-one else seems to be willing to advise as to what else is available.

Thanks for mentioning Age UK. At least another source of information to pursue.

Kind regards,

Jannette

 

[Jannette]

Grannie,

You're right if someone is doing, then leave them to it.

Thank you for your comments.

Regards,

Jannette

 

[HelloDolly]

Hello everyone,

In a similar situation. My mother is at home, with 24hr care provided by us, not eating and with dementia getting worse. Since her diagnosis 2 years ago we have been given no psychiatric help or information. A district nurse has come to change dressings on her legs, but there has been no other help from the NHS. I have asked the GP, but there are no Admiral nurses in her area and a dementia hub too far away for her to access. We are taking her to a private geriatrician on Friday to see if he can give some suggestions for her crying and general discomfort.

This is such a horrible journey for our poor suffering loved ones, and agony for all of us to watch.

Best wishes to all of you on here.

HelloDolly x

 

[Jannette]

Hi Everyone,

Following on from my original post I had to go and see our GP as mum is now starting to hear voices. He has suggested stopping the Memantine. Whilst I was there I asked him about follow up appointments. He promptly printed mum's hospital discharge letter, telling me that I would need to contact the hospital to find out what was going on.

Today I contacted the hospital, the relevant secretary. Only to be told that our GP should have referred mum's case to the local Mental Health Team. He is now saying that the hospital should have done this when mum was discharged. Oh for the wonderful world of politics!! We are talking someone's life here, along with all the other members of the family. This is causing so much unnecessary stress. I have had to fight every step of the way. I hear that I am not alone, but at times it very much feels like it.

So much for the light at the end of the tunnel - can't even see the tunnel anymore.

Regards & Best Wishes to you all xx

 

[Jannette]

Following on from my update yesterday - GP's receptionist had the task of contacting the hospital Dr's secretary today to get an update on the comments on mum's discharge letter. Only to be told exactly what I had already told her (not the receptionist's fault at all, lovely lady who has done her utmost to help me). The GP finally decided to get his receptionist to refer mum to the Mental Health Team. Now here's where the politics come in again. Because the GP has taken mum off the Memantine the Mental Health Team cannot prescribe anything else for mum until - the GP has visited her! Talk about never decreasing circles. Is it any wonder I feel lost?

 

[Selinacroft]

Don't overlook the wealth of info available from here the Alzheimers Society. Take a look at each separate link on here - free downloads or information leaflets, whichever you prefer-on everything you could think of to do with dementia.

https://www.alzheimers.org.uk/info/20033/publications_and_factsheets

 

[Jannette]

Hi Selinacroft,

Thank you for your input.

If it were not for the alzheimers.org website I would be totally lost. I have found this website to be a huge wealth of information I cannot praise this enough. Sometimes I feel more informed about this issue than the 'professionals' that I have had to deal with.

Huge, massive thanks to alzheimers.org

Kind regards,

Jannette