Are you the right person to care for a relative with dementia?

If you are caring for a close relative like a parent or partner with dementia, it can be a very difficult task, not just on a practical level, but emotionally too. They might have been strong and reliable in the past – someone you turned to for support. Seeing them vulnerable and in need of your help will feel strange. But you may have also had a turbulent relationship with that person in the past, and emotional baggage may have built up over a number of years. In these circumstances, it’s natural to feel resentment about caring for the person as you are effectively putting your life on hold to look after them. Is it right for you to care for that person when you have a troubled history or may not have a good relationship now? Even if you get along well now, old arguments from the past may resurface from time to time, adding to the stress of being a carer.

Troublesome history

Is it wise for you to look after a parent or partner if you’ve had your ups and downs in the past? ‘It’s a difficult issue because the carer may be a relative – the husband, the daughter, the wife – but they might be able to overcome some issues that have happened in the past,’ says Vivien Ziwocha, Head of Care at home care agency, Red & Yellow Care. ‘What’s important for the person with dementia is familiarity. Anybody who provides care for them who is a relative is familiar. But it’s key that someone caring for the person with dementia keeps on top of their emotions. I’ve heard someone say: “My mum was very horrible to me when I was younger and I have to care for her”… that is the carer burden and it’s very hard if you’ve still got raw memories. It’s important to be objective. If you think it’s going to be hard for you to do it, either look for somebody external to provide care for that person and oversee it, or get counselling before you enter into the situation.’

A combination of your care and an outside carer may be the ideal solution, as this will give the person the familiarity of having you around and also give you regular breaks. If you work closely with the home care agency staff to help them build a rapport with your relative, it could be the ideal solution for both of you. You can explain to the carer what the person with dementia likes and dislikes, so that they can talk to them about things they enjoy and also avoid irritating them unintentionally by doing things they find annoying. So for example, if the person with dementia likes a quiet and peaceful environment, they may not take kindly to a carer who puts the TV on loudly. Similarly, you can explain to a carer what the person with dementia enjoys – be it regular walks, listening to music or watching certain TV shows. You can provide valuable insight to the carer about the person’s preferences in order to help them understand that person.

Difficult journey
Whatever you decide to do, it’s also important to try and address any emotional baggage you may have from the past. ‘It is a very difficult journey looking after someone with dementia, especially when they get to the middle stage where they have lucid moments and then have moments where their cognitive impairment has taken over,’ says Vivien. ‘You can have times when they can be really mean to you and then suddenly the illness takes over and you have to balance your emotions as a person. It’s very difficult if you are the relative so I would say speak to somebody; speak to their GP or an Admiral Nurse and tell them how are you are feeling about the concerns you have about providing that care. Secondly, if you are struggling, then help yourself and get some counselling, because it’s going to affect you when the person comes to the end of their life. You will still have to deal with your emotions and get over it at some point.’

Ultimately, it’s about ensuring that the person with dementia gets the best possible care while also taking care of you. Vivien adds: ‘The carer’s burden is often ignored in terms of how it affects the person and that needs to be addressed, in tandem with providing the care for the person with dementia.’