My Mum is 69 and went in to secure nursing care 10 days ago for the first time, for respite initially but realistically we all know she won't be going home. She was diagnosed with AD with fronto temporal involvement about 15 months ago, although we all suspect the disease has been with her as much as 6 or 7 years. She served as a paramedic for over 30 years, and retired at the age of 62, and the symptoms have been evident,subtly at first, not long after that. It took such a long time and a real battle to finally get her to the GP in November 2016 when her vulnerability and safety became a massive concern. Mum has lived alone a very independant life for almost 30 years, and so it was very difficult for her to accept any of our worries or concerns and refused to discuss it point blank. I had months of frustration trying to talk to doctors, try to engineer some kind of check up to get her there, but in the end basically had to bully my own mother in to seeing her doctor with me. She got the diagnosis 4 months later.
From then on, and from getting the LPAs in place, I cannot fault the the multitude of NHS staff, Adult Social Care, the Alzheimers Society and other support agencies for the action, support and care they have given my Mum, and me as her primary carer who also works full time with a family of young adults who still need our parental support.
As a relatively young person, Mum is physically healthy, fit, mobile and has become more active in the last year since she was made to stop driving and replaced her obsessive 'boredom drives' with 'boredom walks' many times a day. To a complete stranger she may seem a little eccentric perhaps, a bit odd, but her speech is good and makes sense on a linguistic level and it isn't immediately obvious that she is so vulnerable. Lately she has taken to offering people money to get a ride or a lift in their cars, and has been getting lost more and more frequently. We got a GPS tracker to attach to her keys which has been brilliant, and we have had to find and rescue her on many occasions.
Although she is physically able to look after herself in all respects, she doesn't. She doesn't have the cognitive abilities to recognise the she needs to eat, to wash, to change her clothes, or clean her surroundings. She has no recognition of her condition, not even recognising the name Alzheimers - as a healthcare professional all her life this is very difficult to accept. We had to arrange carers every morning to give her medication after an accidental overdose.
Her world has shrunk massively to a few well learnt topics of conversation mainly about the weather, listening to the same music and watching the same DVD over and over again, and her boredom walks. She has very little short term memory, very little long term memory and does not recognise us any more if we are out of context. She has to check who I am now when I visit. She had become vulnerable to postal scams and begging letters from charities, and had let strangers in to her home on a number of occasions with no acknowledgment of the danger, even when I tried to talk to her about it - everyone is a nice person. I think from her description of one incident she had distraction burglars in the house, but she has very little of value to take. She was not concerned at all, and thought it was nice to have a chat with the man in her kitchen.
The upshot is she is no longer safe to live in the community - I accept that, although I feel it is the community's problem as much as hers. If her world was a safer more trustworthy place, she could carry on with the little quality of life she has, supported by her family. Her physical health needs do not need to be in secure nursing care, but her mental health needs and her safety do.
Now I am getting to the point. The nursing home where Mum currently is is ok, the staff are lovely, the place itself is clean and she has a nice room with her music and DVD - and she is safe. But she is severely restricted to being able to walk up and down a main corridor, with no direct access to outside space or fresh air. The home does have a garden, but she is on the first floor and has to be escorted outside to have a cigarette, or for a change of scenery. She is finding this very distressing, and although I know she has to be kept secure to keep her safe, surely there is a better way? I feel like she would have more freedom in prison sometimes, and that she should have free access to walk a bit, get some fresh air, sit in the garden without having to ask - which she doesn't often do because she forgets that she has to.
Most of the other residents on the unit are very poorly, very old and infirm, with little speech or activity. They need a lot of care and I worry that Mum's needs aren't so obvious or urgent. The staff reassure me but I am getting many phone calls and texts every day (she can still use her mobile) asking to go home and saying it is driving her mad. Am I fooling myself that there might be somewhere better? I am looking at other nursing homes in the area, but how much freedom for my Mum should I expect - I want more for her.
From then on, and from getting the LPAs in place, I cannot fault the the multitude of NHS staff, Adult Social Care, the Alzheimers Society and other support agencies for the action, support and care they have given my Mum, and me as her primary carer who also works full time with a family of young adults who still need our parental support.
As a relatively young person, Mum is physically healthy, fit, mobile and has become more active in the last year since she was made to stop driving and replaced her obsessive 'boredom drives' with 'boredom walks' many times a day. To a complete stranger she may seem a little eccentric perhaps, a bit odd, but her speech is good and makes sense on a linguistic level and it isn't immediately obvious that she is so vulnerable. Lately she has taken to offering people money to get a ride or a lift in their cars, and has been getting lost more and more frequently. We got a GPS tracker to attach to her keys which has been brilliant, and we have had to find and rescue her on many occasions.
Although she is physically able to look after herself in all respects, she doesn't. She doesn't have the cognitive abilities to recognise the she needs to eat, to wash, to change her clothes, or clean her surroundings. She has no recognition of her condition, not even recognising the name Alzheimers - as a healthcare professional all her life this is very difficult to accept. We had to arrange carers every morning to give her medication after an accidental overdose.
Her world has shrunk massively to a few well learnt topics of conversation mainly about the weather, listening to the same music and watching the same DVD over and over again, and her boredom walks. She has very little short term memory, very little long term memory and does not recognise us any more if we are out of context. She has to check who I am now when I visit. She had become vulnerable to postal scams and begging letters from charities, and had let strangers in to her home on a number of occasions with no acknowledgment of the danger, even when I tried to talk to her about it - everyone is a nice person. I think from her description of one incident she had distraction burglars in the house, but she has very little of value to take. She was not concerned at all, and thought it was nice to have a chat with the man in her kitchen.
The upshot is she is no longer safe to live in the community - I accept that, although I feel it is the community's problem as much as hers. If her world was a safer more trustworthy place, she could carry on with the little quality of life she has, supported by her family. Her physical health needs do not need to be in secure nursing care, but her mental health needs and her safety do.
Now I am getting to the point. The nursing home where Mum currently is is ok, the staff are lovely, the place itself is clean and she has a nice room with her music and DVD - and she is safe. But she is severely restricted to being able to walk up and down a main corridor, with no direct access to outside space or fresh air. The home does have a garden, but she is on the first floor and has to be escorted outside to have a cigarette, or for a change of scenery. She is finding this very distressing, and although I know she has to be kept secure to keep her safe, surely there is a better way? I feel like she would have more freedom in prison sometimes, and that she should have free access to walk a bit, get some fresh air, sit in the garden without having to ask - which she doesn't often do because she forgets that she has to.
Most of the other residents on the unit are very poorly, very old and infirm, with little speech or activity. They need a lot of care and I worry that Mum's needs aren't so obvious or urgent. The staff reassure me but I am getting many phone calls and texts every day (she can still use her mobile) asking to go home and saying it is driving her mad. Am I fooling myself that there might be somewhere better? I am looking at other nursing homes in the area, but how much freedom for my Mum should I expect - I want more for her.
