When a parent you love develops dementia it has a profound effect on your relationship. Someone who used to be in charge, a source of information and advice, a figure of authority, ends up being very dependent on everyone else. 

The end stages when the person is in a care home being looked after by friendly strangers is often the most feared part of the journey if people talk about it in advance. That is why many parents tell their children that they want never to go into care. Many promises have been made which end up having to be broken. You are demanding the impossible. Breaking such a promise that has been made to an authority figure like your parent is traumatic for adult children. Watching your mother or father lose independence is bad but having them angry with you because you have had to make a difficult decision on their behalf takes a huge emotional toll on the adult child. It’s already difficult making a decision for another person, without that added burden.

I remember clearly as an adult the first time my teenage child caught my arm at the side of the pavement to stop me stepping into the road. It was such a moment! I had been doing that all of their childhood for them and now they were doing it or me. It was funny.  By contrast it’s not a bit funny when an adult child has to take the car keys away from his angry father and remove the car from the garage because the man is no longer fit to drive as a result of dementia. It is particularly difficult in families where the conversation about the possibility of frailty in the future has never been discussed. The most difficult time comes at the point when taking over decision-making is just starting, and that is the one that is less often talked about.  Though very clear about what they don’t want, people usually never even think about giving their families an idea of what they do want. It’s a form of cruelty to your loved ones if you don’t give them permission in advance to make decisions for you.

The most wonderful thing that I see when I attend a dementia carers group is the way that the members recognise and accept the range of emotions that come out when there is a safe place to talk.  Everyone is grieving for the loss of the relationship they had, whether it was a husband, a father, a wife, or a mother.  The person they used to turn to is now unable to give the support that they did. And they are having to change their role and relationship.  Coping with this change is hard.  It starts with acknowledging the emotions and sharing them with others who are going through the same thing.  Finding out as much as possible about dementia is vital at this stage because you need to know when it is the dementia talking and when it is the person talking.  When your dad says something like “I’m fine to drive”, is it really him?  Did he always lack judgement?  Did he never care about road safety or the well-being of his passengers? Knowing more about dementia will help you set realistic expectations for yourself and for him.  Relax about the fact that he won’t always be grateful for what you are doing in his interest, any more than you were when he made you do your homework in childhood.

The journey is never easy, but it you have got the legal and financial preparations in place, and you’ve talked about what might happen and have siblings who are on the same page and share the burdens of care appropriately it is just part of normal life.  Sadly, the families who come to me for help are those where none of this happened, and the pain from this difficult transition has repercussions for the longest time, even after the person with dementia has died.  As more of us live longer, this kind of issue is only going to increase, and few of us are preparing for it.