I couldn't agree more with everything you said, Drummergirl, and my thoughts and best wishes are with you. I am experiencing a lot of what you talked about and particularly about the bureaucracy and people who write articles in magazines and newspapers (who are these people? What on earth do they know about the complexities and strains of caring for someone with dementia? What do they know about the feelings of utter helplessness and despair that can wash over you, the exhaustion at the relentless drudgery at times?.)
But what has caused me more stress than anything my poor old demented mother has thrown at me is the so called "support services" . you know .. the ones who are supposed to "support" us carers with coping with this devastating illness. You are so right about the frustrating endless paperwork, phone calls, emails etc that makes everything so much worse than it should be and personally has left me feeling physically and emotionally drained. Everything takes for ages, such a lot of jargonistic nonsense and hoop-jumping , it's like wading through treacle and seems designed to cause the most suffering and stress possible.
My blood pressure goes through the roof every time I come into contact with hospital staff, appointment clerks (how many times do I have to tell them not to write to her but send appointments etc to me - she won't know what it's about, it will make her very anxious, she will either lose the letter or throw it away, or will phone me late at night and want to read the entire contents to me). Also causing more problems than they should is the GPs, CPNs, district nurses, and of course the psychiatrists who don't see to have a clue and just view my mother as yet another medical experiment. Not forgetting of course social services whose staff have clearly been trained to ignore all phone calls and emails.
But the main stars of the show, the ones that push my blood pressure and patience to the absolute limit and often beyond is the incompetent, uncaring and overpaid owners of the care agencies, who are contracted and paid handsomely by the L.A. to provide a service which is generally just tokenistic and who shouldn't be trusted to look after a mad dog on a rainy night.
And of course we get the fall out from all the above and have to mop up the mess they all leave behind, while all the time trying to run our own lives, homes, families, jobs etc and also dealing with the guilt about not doing enough (even though we know we can't realistically do any more than we already are). No-one visits because they can't cope with the confused questions, rudeness ,anxieties (even though this is all due to the illness). All I get now is ,"have you thought it's time she went into a home?". And my answer is "Do you think she would be happier and safer in a home? Do you think she won't fall just because she's in a home? Do you think people won't still make mistakes with her medication? Do you know what the staffing levels are in care homes? (what happens to all the other 20 residents while the 2.5 care staff are dealing with someone who has soiled themselves and spread it all over their bed, walls and floor and now needs hoisting,showering, reassuring and putting back to bed?). How would you like to have your false teeth and all your clothes given to someone else who lives in the home? Would you like to be shouted at and (it still happens) slapped, pushed, shoved, just because you want the toilet in the middle of the night, you need reassuring after a bad dream, or you won;t get into the bath or change your clothes or eat your food quickly enough; would you like to live in a house that stinks of stale urine, faeces and vomit? And on top of that, have to listen to endless wartime music". (Apologies to all the good, hardworking care staff out there - but unfortunately you appear to be in the minority). And yes, I have thought about bringing her to live with me, but she still has enough capacity to say she wants to live in her own house and "do her own thing". And I want to support her to do what she wants for as long as she can. Is that asking too much??