Coping with a recent diagnosis - what can I say to comfort Mum?

[jcm]

Hi there, am new to the forum. My mum has just had a diagnosis of Alzheimer's in the past week or so. It wasn't a surprise to myself or Dad as we had noticed signs for nearly the past two years. As my grandmother (Mum's Mum) also suffered from the disease for the last 15 years of her life, we are all too familiar with the signs and symptoms. But it has taken us nearly two years to be able to get Mum to agree to seek help for her 'memory problems' and has been a difficult journey.

As a teenager I helped Mum to care for my Grandmother who lived with us for about 6 years, until it became too much for us and reluctantly we had to move her into a residential care home.

Now that Mum has been diagnosed too, I am left overwhelmed with the prospect of going through it all again.

But my main problem at the moment is knowing how to discuss and acknowledge the condition with Mum. She is not sleeping well, and is obviously very upset and down about the diagnosis. The problem is she still remembers well the awfulness that my Grandmother went through and she said to me the other night that her biggest fear has always been ending up like her. And that she'd rather not be alive than go through that. And frankly I don't blame her one bit. Seeing what my Grandmother went through and how she was robbed of her dignity by this hideous disease makes me feel that I don't want Mum to suffer the same either.

What on earth do I say to her? There's no way I can make it sound ok because its very not ok. I just don't know what to say when she says she's worrying about the future. After all she knows what's coming better than most.

 

[pippop1]

medication

Is she on any medication for the dementia? Can you say that this will help it all be delayed? That might be of some comfort to her.

 

[Butter]

Welcome jcm and I am very sorry to learn of your mum's diagnosis.

There are things you can say, I think, which might encourage your mum a little. The main thing is that we understand things nowadays much better than we used to. Care and treatment can be much more enlightened and humane. Medication is getting more sophisticated and society is opening up and talking more.

When my grandfather was in hospital in the 1960s with his dementia people were treated very differently from how my mother was treated in the same hospital nearly fifty years later. And now my husband is having even more finely-tuned care.

And while your mum is still well enough - and there are no certainties that she will ever get really ill - you can set up Lasting Powers of Attorney together. She can make all her wishes clear. She can make plenty of decisions about her future life and her future care. Would she want to be hospitalised/resuscitated? Would she rather not? Who would she want to make decisions on her behalf if she were not able to make them?

Perhaps you can all get some comfort from setting up plans that may never be needed?

 

[Noorza]

I think Butter has come up with some excellent ideas, I would add to reassure her that you will be there for her and do the best for her throughout her illness.

I might be discussing the stages your nan went through while it is in the early stages for your mum and ask her what she wants when those stages may or may not happen to her. At least she may feel she will have some control.

 

[jcm]

Thank you all for your messages and kind words.

She is on medication (Aricept) but I know it may take a few weeks before we see any impact. And as one of you says, at least now there are some treatments available to help. In my Grandmother's day there was nothing.

You're right of course about speaking to Mum about what she wants for the future but I suppose I am frightened to have those conversations with her as it's all too upsetting for her and for me! I know they will probably have to be done at some point though.

I think for now I will keep focussing on the improvements in treatment and medication that now exist and work myself up to the other bigger conversations.

Thanks all and best wishes to you all
Jo