• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

just a little lost and a lot overwhelmed!

miranda

Registered User
Apr 6, 2006
54
just a little lost cont...

hi Norman, Jarnee & everyone. I am the youngest in my family.I knew there was something wrong with my mum as far as I can remember but it took many years before anyone in my family took any notice & I finally left home at 20 because things had gotten so bad I couldn't cope & I left to save my own sanity. When action was finally taken she spent a number of weeks in hospital before/while being assessed (they diagnosed her not with Alzheimer's but with a form of dementia & was sent to a psychiactric outpatients appt afterwards every so often -however after reading all the info on this site I believe it to be Alzheimer's. Not only before but also after that assessment nothing more was mentioned & my family just carried on as normal. Now it's 10 yrs later, my mum's condition has deteriorated a lot & my dad is beginning to find it much more difficult as his own health is deteriorating - forgetfulness etc (both parents are in their 70s).
I am basically being left to sort everything eg house/finances etc which is so difficult as I have my own family now. I am not only :mad: angry but fustrated too at having to deal with it all. I don't mean to sound like a b**ch or self-pitying at all but I feel SSOOOOOOO fed up at my family for originally ignoring me & the whole situation & leaving it to get as bad as it did and has; siblings to conveniently dump everything on me. Yet I feel guilty because I don't think I'm good enough or the right person.:confused:
 
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Amy

Registered User
Jan 4, 2006
3,453
Hiya Miranda,
You don't sound like a B***h or self-pitying, you are in a very tough place, trying to support your parents, trying to care for your own family. Unfortunately if your siblings aren't prepared to do anything at the moment, then you do have to get on with it; try and not waste too much emotional energy on being angry with them, you need all your resources for your family and your parents.
Are there any specific problems that any of us can help with - there is a wealth of knowledge on TP, about financial considerations (Power of attorney, Court of Protection) and where to get help.
We all experience negative emotions, anger, sadness, jealousy, no-one on here will judge you, we are all doing our best to support someone that we love who has dementia.
I am so pleased that you have sorted out the 'posting' system.
Take care.
Amy
 

jarnee

Registered User
Mar 18, 2006
181
leicestershire
Hi

I don't know about your siblings...nearby?....disinterested?....head-in-the-sand-type-denial? or whatever it may be.
Just a few suggestions ( I hope you don't think I'm being pushy and I'm certainly not trying to tell you what to do...I'm an only child so the decisions were all mine....a whole different scenario)
Perhaps a family conference...do they realise the problem? Are they willing to help?
Try GP / Social Services to see what help is available. Probably GP first I should think to find out exactly what the issues are.


Bit stuck for ideas now....hope you don't mind me trying

Jarnee
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Miranda,

Both Amy and jarnee have come up with good ideas.

The issues with your siblings sadly are not that uncommon. As my husband (whose dad has AD) is an only child, that is one area that I don't have any experience in. The only thing that I can suggest is to make sure that they clearly know what the issues are and what would make a difference to you. The ostrich approach is not unknown and people have a tendency to hear what they want to hear, so you might have to be more direct. If it helps, write them a letter - sometimes just putting it down in black and white is very helpful.

Does your mother have a social worker (SW)? If not, you should try to get one assigned to her as soon as possible. SW's arrange assessments, your father is also entitled to an assessment of his needs as a carer. You can read more about it here:

http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm

A list of all fact sheets can be found here:

http://www.alzheimers.org.uk/Facts_about_dementia/factsheets.htm

As jarnee has said, the GP can help to put the wheels in motion. You can also ring up Social Services direct and request an assessment - a medical diagnosis is not required.

Take care,

Sandy
 

miranda

Registered User
Apr 6, 2006
54
cont.....

My siblings live abroad. Yes we had a conference or rather they talked and decided- hence I get to sort the finances/house etc. Social worker??HA! Don't make me laugh as it was cased closed & nothing they would do-does that surprise anyone??? I will try the doctor though- but do I need my mother to be present?. p.sI am in London by the way.
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Miranda,
I simply made an appointment to see my mum's GP and said that it was with regard to her. Of course the GP is bound by confidentiality, but it lets you enlighten him on the situation. He will then be able to put your dad in touch with a CPN, and get your mum a SW organised. Then support for your dad can be sorted out and maybe day care/respite care. The GP hopefully will get the ball rolling.
Amy
 

jarnee

Registered User
Mar 18, 2006
181
leicestershire
Hi again,

Going to the GP yourself is a good idea. I don't know how well you know the GP or how long he/she has known the family for. But, whilst he IS bound by patient confidentiality, as Amy says, once you explain the situation, you may be able to ask him to see her "under false pretences"
For example a routine blood pressure check/ flu jab....anything !!!! :confused:
If GP is any good, (s)he will ask all the right questions while your mum's there having the pretend appointment to assess the situation.

Then you can take it from there

Just an idea

Let us know how it goes

J
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