My mum was diagnosed with Alzheimer’s just over 3 years ago and as a result, I have substantial responsibilities supporting her as her primary carer. Alongside the help I give my mum, I work full-time and have my own home and personal life to take care of. It is a challenge and involves quite a bit of juggling to fit everything in.
Thankfully, my mum has a care package and gets help on a daily basis to enable her to remain in her own home. However, it does need quite a bit of input from me to ensure that everything runs smoothly and to make changes and adjustments to take into account additional health needs as well as on-going deterioration, as a result on the progression of the Alzheimer’s. For me this has involved navigating a route through the complexities of the health and social care system, both to identify and access, the help and support that is available. It is no mean feat when you don’t have a guide book or route-map and at times you have to be persistent in order to make any progress and all the while you are also trying to hold down a full-time job and look after your own health and well-being. In addition to trying to make do with the help and support that is available, I have also been exploring the possibility of using Self-Directed Support (SDS) to further enhance my mum’s package of care. This too has been a battle with a cumbersome process to access a government-approved scheme which is supposed to give greater choice, flexibility and control of the support available. Six months on from starting work on this and having encountered numerous obstacles along the way, I still don’t have any certainty that I will be able to use SDS in the way that I had hoped.
Alongside battling with the bureaucracy to get my mum the practical help that she needs to be able to live, with some independence in her own home, I am also faced with the realities of how her condition is contributing to increased limitation even with simple life skills, like being able to tell me what she had for dinner or correctly passing on the details of a telephone message. Deterioration in communication and cognitive ability, even with some fairly straightforward things highlight the extent of my mum’s increasing frailty. Likewise, it underlines the harsh reality that condition my mum has is progressing and with its progression, my mum is no longer the person I once knew her to be. All the more reason that I want to make the most of the opportunities that I have to make the time that I spend with my mum significant even in small ways.
Prior to my mum being diagnosed with Alzheimer’s, my knowledge of such a condition was very limited. It has been a steep learning curve. The contribution of an Alzheimer Scotland Carers Support Group and the tide Carers Network have been invaluable in providing peer support and access to other resources to help me in my role as a carer. In addition, I have also been encouraged, supported and empowered to use my experience as a carer to enhance my own personal development, as well as to help contribute further to improvements in the way that carers are recognised, valued and treated and to the development of the overall package of dementia care and support, locally and nationally.