The idea started, when I was supporting a lady while I worked as a Palliative Care Lead Nurse for a Neighbourhood team of Healthcare Professionals.  This lady had a palliative diagnosis and was nearing the end of her life.

She wanted to attend her daughter’s wedding, but felt she was too frail to do so on her own.  She had moved into her sister’s home as she became weaker. So, she had good insight into her own limitations. The wedding was also abroad.

She did not want the other guests to know just how ill she was or to worry her family at this busy time and felt that she may not be able to manage independently.

She worried that she may need help with her mobility and who would know what to do to maintain her dignity, she may need medication to help manage her symptoms and who would help her with that, she may become too fatigued but did not know where she may rest, she may not be able to find the facilities in time and embarrass herself.

It turned out a friend of a friend of a friend knew someone who may be willing to help.  There did not appear to be a service that could offer this kind of support to her. In the end she was unable to attend at all in person.

I could relate to this and was motivated to investigate it further.

I have a special family member who is elderly and frail, increasingly so, 101 years now and counting, but she is totally committed to remain independent and this is part of her, her essence, she is increasingly deaf, has poor mobility and struggles to eat without her food being prepared and presented to her in a way that is easier for her to access and eat.

If she were to lose this independence it would impact on her quality of life and her ability to cope.

I am her advocate, she continues to have full capacity and with her consent, I talk to her GP (after discussing everything with her) as she cannot hear them well over the phone. I go in with her to see her consultant so that she can understand every aspect of her care.

I support her to complete forms as she cannot see so well, sometimes I need to explain things to her in a way that she can understand better.

I have taken her to Hospital appointments, out to events so that she feels she belongs. I have stayed overnight with her for moral support, comfort and to provide physical support if she required it when she was first discharged from hospital following a fall for a few days until she felt stronger.

I also supported my In Law’s family, from a distance, during the first lock down in the Covid 19 pandemic in 2020.  My lovely Father-in-Law was nearing the end of his life (not related to Covid 19) and the medical professionals were overwhelmed.  His family wished for him to die in his home surrounded by those who loved him, which at that time was challenging. I worked for Macmillan as a Cancer Information Nurse on the National Support Line and it was a really difficult time for the Nation.

I could not visit, and professionals were not visiting due to the various restrictions and “bubbles”.  I was able to offer support over the phone and “What’s app” based on my experience, I could help triage symptoms when talking to my husband and was able to guide, signpost and prompt him to ask relevant questions and give him an understanding about what was happening physically and how additional support could be accessed.

The community nursing team were amazing and so very knowledgeable and kind. He did die at home surrounded by love.

My father, diagnosed with cancer, who is fiercely independent and very private, had no idea how he would get to the appointments or where he would park his car once at the Hospital, never mind remember what was discussed as it was all so new and worrying for him.

I know it must have been hard for him but he asked me to support him, to go with him to the appointments where important things were being discussed and he would need all the information in order to make an informed choice and decision. “Two pairs of ears were better than one”, he said. I was conscious not to direct his thinking but to let him come to his own decision and be his sounding board so that the decisions about his health and future were his alone.