Becoming a primary family carer is a job that no-one applied for and no-one wants, but sometimes it is forced upon by circumstance and they have little or no choice.
There will always be days when things do not go well, as well as days of joy, happiness and intimacy, that would probably never have been possible if the loved one were not unwell. These happy days should be remembered and treasured. They should also be the kinds of days that each and every new day, the family carer starts the day aiming that that is how they will turn out. Each and every new day is exactly that, a fresh new day full of the possibility of things being amazing.
But there are days when things don’t go well, when the unexpected and unplanned happens, it could be a natural disaster, who could have predicted 5 years ago that we would be in a global pandemic? Things that can go wrong might not be so huge, it might just be that the person develops a urinary infection (UTI), but this can make them feel very unwell and require antibiotics to clear up the infection, so they will be unwell for a few days before the antibiotics become effective.
The issues might also be bigger than that, such as a fall, with the consequence of broken bones, which might take surgery or just a long time of recovery, such as with broken ribs, which can’t be put into a cast.
Carers need to expect both good and bad days, they need to know that there will be days when things go wrong, when everything seems to be a disaster! But these days end and the good days come along behind them. Knowing that these bad days will happen makes them just a little bit easier to manage when they do happen. It still means that they have to deal with whatever issue has arisen that day, but what they don’t have to deal with is the sense of despair at things going wrong, because they knew that at some point they would go wrong.
The key thing in knowing that things will go wrong allows the carer to get a contingency plan in place, what will they do to look after themselves and their loved one? Just taking a breath, a big deep breath in and breath out can give a few seconds of space for the unconscious brain to begin to form a plan. But what else is needed? More care? Is there a group of people that the carer can rely on? Self-care? What does self-care look like for the carer? Can they take a long relaxing bath? Who will look after their loved one when they do?
There are lots of different things that a contingency plan might contain, care for the person with dementia as well as care for the carer. Each plan will be as individual as both the carer and cared for are themselves. Whatever it contains, is less important than making sure the plan is in place in the first place. So that when things do go wrong, they can be better managed.
Supporting carers and making sure that they have the resources and resilience that they need to support their loved one is all part of the connectivity of humans. At some time/s in our lives, we all need some help and support. I wish you well.