“I didn’t get there in time but I did try!”
Seems like yesterday I would sigh inwardly but outwardly smile at my children when they were toddlers and say “don’t worry I am sure you will make it next time”. And they did and the accidents became less and less until I forgot about them all together.
But some years later when I became a family carer I had to revisit that scenario….Except this time because it was an elderly family member there was a next time and more times. When your kids are little and you are tired and exasperated there is always that positive thought that things will improve and the children will move past the toilet accident phase. But it is the opposite when you are caring for someone terminally ill. It is sad and it can be demoralizing and it makes it harder to manage feelings of exasperation when you are exhausted
The shame of it
The hardest thing is not the cleaning up as you just get on with that. It is your loved one’s look of deep embarrassment which is painful to watch and a sharp reminder to keep your own feelings in check and a smile on your face.
Practical issues are relatively easy to deal with as the person you are ‘mothering’ has no choice but to allow the role reversal as you clean up and put things right.
So much harder are the psychological issues. For instance, accepting walking aids. I remember the occupational health visitor arriving with a catalogue full of equipment that we desperately needed. The walking frame was top of my list as every time the walking stick was dropped on our wooden floors I came rushing, fearing a fall. My nerves were shattered with the worry. But the walking frame and all the other useful aids were refused. There was nothing I could do as unless there is mental impairment it was not my decision to make. You cannot force someone to acknowledge reality even if it obvious to everyone else.
Voice of authority
Thank goodness for the hospice visitor who called. He had a conversation around the ‘what ifs.’ A fall and a broken hip would mean hospital for at least three months. Hospital was something to be avoided and the equipment was requested within minutes.
Inwardly I was upset that that the voice of authority from a professional was respected when my opinion as the 24/7 carer was rejected. It helped for me to proactively adopt the same relaxed attitude as I do with my children when they listen to their teacher but not me – that is “just the way it is”. There is also a positive in that the strategy of asking someone in authority to solve a problem was one I could use again.
Asking for help
I needed help to fulfil my adult parenting/caring role and thankfully when I looked and asked it was there.
There is a lot of emotional turmoil on both sides in these situations. I was simultaneously parenting my young children and older relative whose overwhelming caring needs dominated the household. We found solace in a family counsellor organized by the hospice who came in to see all of us individually and together. The children could express their feelings about being pushed aside which were acknowledged and validated. The help was there.
When your kids are little no matter what is being discussed you are the parent and the discussion is with you. In role reversal when you are effectively parenting someone elderly it is different. You are the one with all the practical responsibilities and the objective awareness of the health issues, BUT it is the cared for who has the say. I recall seeing clear signs of extreme pain regularly but when the doctor came it was described as “it is nothing”. No one can be forced to take pain killers. The feelings of helplessness, knowing pain killers would help was almost physically painful for me.
… and then more help
The booklets and online resource from Marie Curie and Macmillan are absolutely fantastic and helped me navigate difficult issues: I highly recommend them to other carers.
When you think of caring for an elderly relative and the reversal of you roles you tend to think of the feeding, toileting and the practicalities of being on hand 24/7. But once in the situation you realise that the psychological aspects of the role reversal bring the toughest challenge.
My advice is to focus on what expert help you can access as you go through this process: with that additional guidance and reassurance, the role reversal takes place more naturally without you having to drive it.