This seems like such a simple thing to do, but we don’t! I hear lots of stories about how people struggle on in supporting a person with dementia for lots of reasons, including that they don’t want to bother other people, that it’ll be fine, that the person with dementia doesn’t want people to know……
People with dementia and their carers keep going until they can’t.
Then when a crisis hits, because the situation has become completely unsustainable, then help arrives, often because statutory services are involved. So the paramedics are called, the person has to go to hospital or the police are called because the person has gone missing. At this point often social services become involved and they can have a set pattern of outcomes that they are seeking, which can be the risk averse solution. This might be the right solution, but it might not. They are skilled and experienced in dealing with these situations, they have the connections, but they also have limited resources to put towards solving the issues.
If help were asked for a little bit earlier, then there would be greater contingency and the care support would be less likely to reach crisis and break down. It doesn’t mean failure if a crisis arrives, it just means that this was outside what was planned for and that happens in life all the time.
It is helpful early on to realise that dealing with dementia, both for the person with dementia and their carer is likely to be new to them, even if they have supported someone else with dementia before, each dementia journey is unique, so each will have probably some similarities and some differences. And no-one has all the answers, no-one can be the keeper of all knowledge. This means that seeking help is getting the best information, advice, perspective and support. The best decisions are made when everyone involved in the situation has had an opportunity to express their view and then with full information, decisions can be made.
Asking for help might mean, just asking for someone to listen to your story, to be there as a witness. Sometimes the carer might need some respite, but just for a short time, enough time to go to the hairdressers and have a coffee with a friend on the way back, so asking someone to sit with their loved one or taking them to a support group to facilitate that might be quite easy.
There are lots of pieces of equipment that can make life much easier and new things are being developed all the time. Investigating what would be worthwhile having and investing in the right kind of technology can be very helpful. There are things that monitor lots of different aspects of someone’s life, what tech is required will depend on what is happening and what is important.
Planning and recognising that going through a dementia journey will have its ups and downs, there will be deeply rewarding days as well as disaster days. The aim is to maximise the brilliant days and minimise the terrible days, but this takes help and support, so a willingness to ask for help. Not asking for help is also a common human trait, I am very bad at it myself in my personal life! Just because it is not easy, does not mean that it shouldn’t happen. When asked, most people are willing to provide a little bit of help and some people are willing to provide quite a lot of help!
So if you are at the start of the dementia journey, or even if you are any way along the path, it is worthwhile doing that difficult thing and reaching out to connect with someone else and ask for some help.