• 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.

Carers....long journey ahead


Registered User
Mar 23, 2008
coast of texas
OK, I've been reading lately. Been doing everything that I am supposed to do. In a few weeks I will be returning to a full load of real work here at home. I'm posting here because I am concerned. I'm concerned that people are not treating themselves properly. A few posts here and a few posts there and I wonder if everyone is really getting the full picture as to keeping their own mental health up. I'm hoping that those of you who are doing the full-time home carer are putting into effect or have already put into effect some sort of way of having a little "me" time...and no that is not being selfish.

For those of you not doing the full-time carer at home but are still very active in the care I hope you are still getting some sort of mental help. I know we all have other halves who listen or friends whatever....I know we have this forum. But the 2 together still cannot help the resolve that is needed to keep from feeling the pinch of AD. For those of you who are thinking I am being.....don't know the exact word I want to use. I've been there.

Please take the time to give yourself some me time. Please take the time to learn to live with AD so it does not become your "prison" ....I promise it will if you don't. Please take this time so that you may better care for your loved one....so that you may be his or her voice without GP's, SW's, CPN's questioning you because they do not feel you are fit enough. I promise you that the way they see you also regulates at how your loved one may be cared for.

In the UK you have a very different set-up of healthcare than our own in the US. Both are very flawed. Both let dimentia and AD patients fall through the cracks. One is based on pay as you go....no money, no treatment. (That is if you don't know how to work our own government system for the social services.) The other is taken care of by the government, doctors have guidelines set up by people who are not qualified, but only look at the bottom line. (Still have to know how to work the system to get it done right.)

The point I'm trying to make is that if you do not keep yourself at top also some of you may be looking at a long road because you can be pushed thru the cracks with your patient. Keep yourself healthy both in mind and body.

For those of you who are fighting the system...keep it up. You know your limits. To each and every one of you out there starting this journey....I'm sorry you have to go this route, please read old posts in the forum...sort of like a book. You'd be surprised at how much you will learn. Give yourself knowledge...learn more about AD than your DR. Take the time to embrace yourself...without you, your loved one is in the dark. (I am not trying to make a joke ...this is a literal statement of how life will be) Seek out people face to face who are going thru what you are going thru. The forum amy help, but these people will be your lifelines. Learn to accept patience...patience for your loved one and patience for the idiot on the street.

I love you all, you are a second family to me, I'm not trying to be on a soapbox, I'm trying to give a reality. Take care of yourselves....you know what I mean.



Grannie G

Volunteer Moderator
Apr 3, 2006
Thank you Nancy

Take care of yourselves....you know what I mean.
I certainly do know what you mean.

When you are in the thick of caring you tend to go with the flow, until it eiter becomes unmanageable or a crisis happens and things are taken out of your hands.

When the responsibility has been taken from you, after years of caring, you have time to appreciate the freedom, the ability to be spontaneous and the peace.

It`s just trying to get it right. To know when to say enough is enough.

When my husband was in hospital recently, although I was visiting every afternoon and was tired and worried and very upset, the hours I had to myself gave me a freedom I hadn`t experienced for a long time. The freedom just to do as I pleased without interruption.

We can only do what our minds and hearts dictate. Sometimes hearts and minds are in conflict.

Love xx


Registered User
Mar 23, 2008
coast of texas
"Sometimes hearts and minds are in conflict." That is so true and that is why I stress the carer keeping themselves healthy with out health the 2 cannot be in conflict.

Grannie G you are such a doll and I hope that people on this forum take what you give and run with it. There is so much knowledge and up and down triumphs that can help others. Bless you for allowing everyone in.




Registered User
Oct 1, 2006
Dear Nancy
What a very honest and true post.
At the moment I am fighting to get respite for my husband and although it sounds cruel I cannot wait.
I feel pushed to the limit and I just want me time, to read a book uninteruped or listen to my music without having to listen out for my husband, or just to sit quietly if I want.
May I just say Nancy thank for thinking of us when you have just lost your mum you are someone special
Love Roseann


Registered User
Mar 6, 2007
thank you for such a great post. Like everyone who has posted before me i know exactly what you mean. my friend once said: 'life's not about waiting for the storm to pass, its about learning to dance in the rain'-now more than ever it seems to be so relevent.
take care
lots of love
lauren xxxxx