In early December last year, my mum’s dementia progressed and she was telephoning me many times a day to ask me to go and collect her, take her out of the home and bring her home.
One particular day she called both my sister and I over 80 times each, with no memory of having made any of the calls.
I was able to cope with the first 50 or so, but by the end of the day I on my knees. I just cried. I felt so helpless, frustrated and angry. I was angry for the difficulty of my own journey, I was angry at the disease. I lapsed in to “Why is she doing this to me and my sister?” I felt victimised, even though logically I know mum had very little or no conscious awareness of her behaviour.
But I also realised I was directing my anger partly at the care home for their lack of emotional support. It wasn’t really their job to support me, they are paid to look after their residents, not their resident’s families. I belonged to a local dementia support group, but that wasn’t quite touching the spot. I couldn’t help but think it would be helpful for the care home to provide some validation of the difficulty of the emotional journey that we relatives are on too and some tips on dealing with our relatives as their dementia progressed. My mind went back to the last three weeks of my dad’s life in a hospice, and one of my enduring memories was of the level of emotional support for us a family. That support helped those last three weeks be a little easier.
On my next visit to see mum, part of me wanted to blast the management of the home for their lack of interest in our suffering and another part of me wanted to be constructive and to ask for help in the midst of my vulnerability
Before I visited, I emailed Irma, activities manager, to see if I could speak with her, and whilst there I shared my feelings with her, without blaming her or the home. I just shared how difficult this journey was for me.
What emerged from that conversation was an idea and a project to work together to create a little guide for us relatives to help us understand the journey with dementia and what was happening to our relative, and to recognise our own journey, and how we could still have as a good a visit as we could with our relative.
Irma and I have met three times now and have finished our little guide. I am truly grateful for the conversations with her, I felt like I was getting 1:1 coaching and I came away from our conversation with greater understanding, validation and feeling more resolved. My time with Irma has been a blessing for me, and it also helped her recognise how much she understood about dementia and how many other people were going through the journey I was going through.
I could have acted out of anger and blame, judged and attacked the management of the care home and if I had, I could have alienated people and made things worse. Or I could share my vulnerability, work together and see if we could find some kind of a solution.
The most important thing I learned out of this experience was the ongoing lesson of the power of taking full responsibility for my own feelings and experience, rather than looking for someone to “pin them on” or blame for them. My own vulnerability became a birthing place. I could have toughened up and attacked, but I decided to open up, and better things have emerged as result. I tapped in to my natural impulse to take the pain of my own life and turn it into something creative that could help others, and to help myself in that process.
I believe we all have the capacity to do that, and it isn’t always easy.
Mum’s dementia continues to progress; It is a one way journey. We have removed the phone from her room. And I am handling the journey now better than I was. I am seeing that as her dementia progresses, I am going through a protracted grieving process, losing her little by little while she is still “here,” and in many ways, isn’t here anymore. But I am able to cope with the heart breaking journey better than I was.