Apologies for the delay in writing up this blog but it is something I did not wish to write. For some time my mum has been living with dementia. As a family we adjusted to my mum’s needs as she progressed in her journey; from thinking that there was something wrong, which she could never put her finger on to visiting the doctor and discussing worries, ultimately receiving a diagnosis.

To be honest the diagnosis was largely confirmation of what we already suspected and gave us a focus for discussing how we could adjust the support we offered to my mum to ensure she could continue to live well. As a family we thought we had been proactive and put plans in place for future needs. Power of Attorney, DNR had been openly discussed and agreement reached about how to honour my mum’s future wishes. However although meaningful discussions had happened, what we were not prepared for was the emotional impact of having to follow up with some of these decisions.

My mum started to leave her home at night, and concerns were raised about her safety and the risk to her wellbeing, this ultimately led to a hospital admission and numerous reviews and plans for her long term care. We attempted to support my mum back home and enjoyed a weekend with her in her home. However this required 24 hour support with my brother or I present to maintain safety, which was not sustainable in the longer term but was an attempt to honour my mum’s wishes as expressed in her POA which was that she would live and die within her home with extra support if this was required.

Ultimately my mum moved to a care home and slowly we are adjusting to this change. My mum is taking an active part in the routines of the home in maintaining the garden, doing some cleaning up of dishes after meals and has a sense of pride in what she has been able to achieve in the short time she has been there.

I have been working in care for over 30 years and hope that I have been able to advocate on behalf of providers and the positive impact that they can make but my own reflection would be that the decision to support my mum to move into care has not come without a profound sense of loss and guilt. My mum has been a strong independent woman, who has dealt with major events throughout her life in a resilient fashion and shown that not only would she survive but also thrive. The move to a care home appeared to shrink her as she attempted to adjust to her new environment, which I think she believes to be a hotel she is temporarily living in, the gardening and cleaning being something she is expecting to be paid for, which my family are happy to help facilitate.

The fear associated with my mum moving into care is wrapped up within feelings of my mum losing her sense of self and the coming to terms with how we can support her to maintain a level of independence and a sense of agency. My mum has been supported by some wonderful staff who when spending time with her appear to intuitively have developed an understanding of how to best approach my mum, they know that gentle banter and a humorous interaction will be more successful in fostering a relationship with her. My mum’s consistency in reaction to these individuals gives me a sense of content that when supported by such staff that she is safe and well and family members are of the same opinion.

We are a reasonably articulate family with experience of health and social work services and reflecting on the last year I am aware of outstanding issues which I do not think have been resolved to our satisfaction. On diagnosis I expected and requested post-diagnostic support, more than a year after diagnosis we still await this and when it is, if it is offered, it will be at a point when my mum is not able to use it meaningfully. Attempts to arrange home care and daycare opportunities did not appear to be supported by statutory services and the response from statutory services appears to be have been in the light of major concerns about health and safety, concerns about imminent danger, rather than a planned therapeutic intervention which may have delayed the move into a 24 hour care setting.

 

Brian Polding Clyde

Local Integration Lead, Inverclyde & West Dunbartonshire