I have been reflecting recently of just how much of the last three decades I have spent consciously pioneering in my own life. From leaving my corporate job to starting my own business, becoming a promoter, a Director and then Trustee of Alternatives in Piccadilly, becoming a speaker and coach, becoming an author, creating a body of work and developing several brands along the way. I feel like I have been continually nudged along by inspiration into new chapters and new territories of my life, and bigger sense of who I am.
I am also aware how sometimes I find myself pioneering without consciously choosing to do so. I find myself in that place now with my mother and her journey with dementia.
My mum went in to a care home in October 2013 for some temporary respite after a fall at her home and some minor illnesses and some short hospital stays. She had successfully lived alone since my father died in 2005, but after several months she decided to stay in the home. She already had a degree of dementia, but it wasn’t too bad. She wasn’t functioning OK, but losing the motivation to things for herself. She signed papers to give me power of attorney over her financial and health affairs and said she wanted to live out her days in the care home. So I rented out her house to help pay for the care home fees.
Her dementia has now become very bad and her behaviour has been gradually changing. The care home management have needed to move her within the care home for her own safety. Often now she will ring my sister and I to tell either of us she is feeling awful and doesn’t want to stay in the care home any more. She asks me to come and take her home. If I say I can’t do that, she says she just wants to kill herself and then she’ll often slam the phone down on me. Then she might ring me another five times within an hour and we’ll have the same conversation, with her having no awareness of how many times we have already had this conversation. Then she says what a nuisance she is to everybody and just wants to die so she won’t be a nuisance any more.
It is heart-breaking stuff.
We are now in the territory of “Best Interest Assessment,” having external assessors involved to establish what mum’s cognitive capacity is and whether she still knows what her own best interests are and is capable of making her own decisions.
New territory again
So, yet again, I find myself in new territory, a place I have never been before, navigating my way in unknown waters. At first I wanted to resist it, judge it and say this shouldn’t be happening. But it is happening, and so I am learning to grow through it.
I am learning how I can handle her behaviour, and probably more importantly, how I handle my own emotional responses to her behaviour and what gets triggered in me. I am learning to handle my own hurt, my anger, my sense of helplessness that there doesn’t seem much we can do for her. I am handling the sense of guilt that I experience when I feel like I am the bad guy for making her stay in a place she says she doesn’t want to be in anymore.
Whilst I didn’t consciously choose to be on this path, I like to believe that somehow my mum and I “signed up” to be on this path together at a deeper level. So I am aiming to utilise this journey for my own spiritual and personal growth.
Although it is a heart-breaking experience, I choose for it to be a heart opening experience too where possible. Just last week I realised that I have found levels of kindness and patience within me that I hadn’t realised were there. Where I can, I am learning to love even more without conditions and without demanding anything in return.
Dealing with my grief
This has obviously taken a lot of emotional energy.
As well as needing to be responsible organising for her care, being a landlord for her, dealing with care home and the external assessors and looking after her finances, I am obviously on my own grieving journey, losing mum little by little. It is a strange journey, because although mum is there “there”, increasingly she isn’t the woman she has been. Sometimes I feel quite upset and bewildered by her behaviour. I have already lost most of the mother I had, and am now needing to be more of a parent to the child in her. The mother I had is going and the child in me is grieving. We don’t have much of mum anymore, we are mainly dealing with the illness of dementia and the behaviour it leads to. I feel anger with her at times, a taboo subject if I am supposed to be there for her.
And I have my own life to enjoy, my own business to run and interests to pursue.
As with all pioneering, whilst this is new territory for me, many others have been here before and many others are here now, so there is support and wisdom available to me. I have joined a local dementia support group near where I live in Finchley. Most of the members of the group are dealing with losing spouses to dementia. I have also utilised the National Dementia helpline a number of times to help me understand what happens to people when they have dementia so as not to take it personally.
Experiencing my mum’s suffering and feeling helpless to do much about it is a tough lesson for me.
Do you have any experience of being on a dementia journey with a family member or friend? I would love to hear from you.