Life with a dementia sufferer

Everyone thinks about the problems if daily living with a dementia patient. The things they can't do for themselves, the problems caused by memory loss, the mood swings that affect those around them.

I do have those concerns in a small way, but I'm not living with Edna so it doesnt have a huge impact on me and mine . What is really getting to me at the moment is the huge uncertainty.

How long will she be able to live on her own?
What will happen when the current care package is reviewed?
Will she accept help if she has to pay for it?
What will happen if I cant persuade her to give me power of attourney?
How much official help will there be for me - if any?
How bad will things have to get for Fosters management to say she can no longer stay there?
Can Fosters actually evict her legally?
If they cant then will I be able to persuade Edna that she needs to move?
Will I be able to persuade Edna to do ANYTHING she doesn't really want to do?
How long is all this going to go on?
How do I stay sane through all this?


The effect of all this uncertainty on me is pronounced - and that does impact on me and mine. I dont have any control over any of this. The irony is that a lot of Edna's stubborness is becasue she feels she is losing control over her life. And sadly she is right - but it isnt me doing it - its the dementia she doesnt know she suffers from.

Should I tell her? Would it make things easier? Would she beleive me? Would she understand? Does she already know anyway? I dont know if the hospital told her.I think if they had she would have talked to me about it so I am fairly confident they didnt. I have always told her I wont lie to her - and I wont. But I am not telling her the whole truth at the moment. Morally and ethically is that the same as lying to her?

Her illness is currently the elephant in the room every time I see her. Maybe it would be best to acknowledge it. Maybe there is someway it can be discussed without using ther 'd' word - and certainbly not the 'a' word. I am so scared that if she knows she will just give up and sink even further into depression.

This uncertainty is something I didnt anticipate in theaftermath of the diagnosis and its a much bigger problem than the disease at this time.

I really need to talk to someone expert about all this. Its not much of an action plan but its better than nothing.