Our GP has agreed that mum needs a formal diagnosis. He's arranged the blood tests to rule anything else out and he's coming in the next couple of weeks to pay her a 'routine' visit, where he will ask questions about her memory and general capability. He's advised me that at the stage she appears to be at now, a formal diagnosis will make a difference as additional help could be available for her.
Mum needs assistance dressing, washing and has night time bladder incontinence (although not every night) Her mental state, mobility and coordination vary quite dramatically, even over the course of a day. One thing she is very good at, is slipping into host mode when people come for a short visit. If they stay too long, or talk 'at' her for too long, she blanks out and then gets very distressed when they've gone.
I spend a lot of time with her and when she's having a good day and we can get out for little car trips or do things like baking, she's really happy. It doesn't take much though, to knock her into her 'down' state which is basically, a blank stare, crying, total confusion and occasional paranoia about money and insults for me.
I understand, if mum gets a formal diagnosis, she will get a Care Plan. I keep reading about 'support' but there's precious little about what this actually means. I know everyone's situation is different, but for those who have been through the process. I have some questions:
1. If you are the principal carer, how much did you feel you were listened to?
2. Was the PWD offered any occupational therapy or physiotherapy?
3. Have you been offered any respite care? How much choice was there as to how this was organised?
At present, we use a private care agency and to be honest, as a family, we're not really enjoying the experience because it's causing more stress than assurance. It feels as though they are not listening to us and have a very 'nanny knows best' approach. It feels as though we are under scrutiny, rather than paying for care.
I'm in no way exaggerating when I say that for a few days after the 'care review' I was for the first time in my life, actually suicidal. I have never felt so utterly pointless and desperate. I'm pulling back now and keeping my fingers crossed for the GP appointment, but I'm still very fragile and as I have an incurable auto-immune disease, a combination of Xmas stress, flare up and clash with the agency has left me really determined to take a step back and re-evaluate.
I spoke to an Admiral Nurse who was excellent and is going to find out if we are eligible and sent me lots to read. I just want to find people who genuinely listen to the family of the PWD and more importantly, really get to know the PWD as just a 'P' as well as a 'PWD' .
I hope I truly hit rock bottom last week and the only way is up!
Mum needs assistance dressing, washing and has night time bladder incontinence (although not every night) Her mental state, mobility and coordination vary quite dramatically, even over the course of a day. One thing she is very good at, is slipping into host mode when people come for a short visit. If they stay too long, or talk 'at' her for too long, she blanks out and then gets very distressed when they've gone.
I spend a lot of time with her and when she's having a good day and we can get out for little car trips or do things like baking, she's really happy. It doesn't take much though, to knock her into her 'down' state which is basically, a blank stare, crying, total confusion and occasional paranoia about money and insults for me.
I understand, if mum gets a formal diagnosis, she will get a Care Plan. I keep reading about 'support' but there's precious little about what this actually means. I know everyone's situation is different, but for those who have been through the process. I have some questions:
1. If you are the principal carer, how much did you feel you were listened to?
2. Was the PWD offered any occupational therapy or physiotherapy?
3. Have you been offered any respite care? How much choice was there as to how this was organised?
At present, we use a private care agency and to be honest, as a family, we're not really enjoying the experience because it's causing more stress than assurance. It feels as though they are not listening to us and have a very 'nanny knows best' approach. It feels as though we are under scrutiny, rather than paying for care.
I'm in no way exaggerating when I say that for a few days after the 'care review' I was for the first time in my life, actually suicidal. I have never felt so utterly pointless and desperate. I'm pulling back now and keeping my fingers crossed for the GP appointment, but I'm still very fragile and as I have an incurable auto-immune disease, a combination of Xmas stress, flare up and clash with the agency has left me really determined to take a step back and re-evaluate.
I spoke to an Admiral Nurse who was excellent and is going to find out if we are eligible and sent me lots to read. I just want to find people who genuinely listen to the family of the PWD and more importantly, really get to know the PWD as just a 'P' as well as a 'PWD' .
I hope I truly hit rock bottom last week and the only way is up!