What should be in a handbook on caring for someone with dementia?

[Dazmum]

I remember early on in mum’s dementia that finding the Compassionate Communication list was my light bulb moment.

I wonder if the handbook could include something on what happens/ may happen when someone goes into a care home, either for respite or permanently, so that relatives have an idea of what to expect? So, a piece on preparing them ( maybe some love lies, a little holiday, the doctor wants you to have a rest), what to take, make a room homely, taking the person and asking the home to distract when you have to leave.

What the person might do, (my mum walked herself ragged for several weeks which was so distressing), others ask to come home and pack, how to help get someone settled, advice on talkng to the care home to get what you want, but also recognising that they can’t give the exact one to one care that you gave; that took me a lot of adjusting to. A wise TPer told me to pick my battles, which I do, luckily I don’t have many now.

How to deal with the guilt of having to place your relative, some reassurance that you have done the right thing.

These are all issues that I asked about and got great advice and support with from Talking Point. I don’t know what I would have done without it, and because of the posts here I have an idea of what to expect, so that as my mum deteriorates, I am sad, but not shocked or devastated which I might well have been.

 

[Amethyst59]

Actually, Norrms post from yesterday...sorry, tired...about ‘what they don’t tell you’, that was a good one for putting the case from the point of view of the PWD. What better to put in a hand book?

 

[PalSal]

Actually, Norrms post from yesterday...sorry, tired...about ‘what they don’t tell you’, that was a good one for putting the case from the point of view of the PWD. What better to put in a hand book?

Thanks AM...I do not venture out much in the TP site I read the carers posts. This was a wonderful post from Norrms from the other side of the coin. I wish my very English public school husband would have shared more like this along the way...but he did not. Keep sharing with us Norrms we care and are interested in what you have to say.

 

[Annicke]

Wow. This is so right.
I have been to hell and back caring for my parents both with dementia.
As a only child I have struggled alone for 5 long years and only recently after hitting rock bottom i finally plucked up the courage to ask someone for help
Guess what help came in many different forms and I realised no one not even someone with super powers could do this job alone.
I have realised that it's not wrong to ask for help, u havent got tocope on my own, i havent failed by asking for help and that I am entitled to have a life of my own as well as being a carer.
I am a good kind person and love my parents dearly yet they have pushed me to a limit that is ridiculous. I am overwrought with guilt for sometimes shouting at them, even using terrible bad language. My parents didn't ask to have this illness and it's bloody so sad to watch them deteriorate.
M mum now calls me Anne not Allison and she doesn't know me at all.
I have found this very hard to accept as my mum was or still is my world , my bestest friend, my rock and my life. I wish I could turn back the clock Toma time when she didn't have this illness, to a time when we used to go shopping, to a time when it was me and mum mother and daughter.
Memories are all I have now and I will love her and care for her always. I am a good kind,considerate,caring,person and my mum taught me and made me who I am today. I hope actually I know I am going to turn into my mum and I will be proud o follow in her footsteps.
I LOVE MY MUM AND DAD AND AM PROUD TO BE THEIR DAUGHTER.

 

[shellbag]

I find there are enough tips for carers to help the patient, I think what would be more helpful would be tips on how the carers should look after themselves mentally and phyisically. We get absolutely worn out to the last at times and can feel very down. The last thing we want is to send our loved ones away from home But if the carer is wornout the patient suffers too. So my request would be ideas on how to keep a harmonious atmosphere around the house for both patient and carer...If you can do that the handbook will make you a millionaire

 

[Pinkys]

I agree with Shellbag. Advice on dealing with guilt. repeated statements that it does not get easier, that no 'solution' lasts for long, and that residential care is not failure or betrayal.

 

[Mark_W]

Thanks for all your comments, they're much appreciated.

Andrew from our publishing team says:

"Thank you for your views on what should go in a carer’s handbook. Your thoughts will help us to update our resources and make sure they meet the needs of people who are caring for someone with dementia. We’ll be working on these over the coming year."

 

[Mark_W]

And here's a small update from Andrew in the publishing team:

Thank you for your valuable contribution to our review of our information resources for carers. Your input has helped us to shape our future publications, including how we revise our handbook, Caring for the person with dementia.

We have combined your insights with feedback from a number of other people who are currently or have previously cared for someone with dementia. We have used these to shape the content of the handbook and propose a number of new publications, including resources on the issue of the person being in denial about their symptoms and/or diagnosis.