We often talk about the practical challenges of caring for a person with dementia, but what about the emotional hardships we face as carers? This article explains why it’s important to deal with the emotional issues as well as the practical ones
Caring for someone close to you who has been diagnosed with dementia can be extremely challenging, not just on a practical level but emotionally too. When you care for a partner or parent with dementia, you will have accumulated years of memories and experiences with that person. So it can be very difficult to see them change and become more dependent on you. They may have been a dominant personality in your life, especially if they are your parent, and you may have looked to them for advice and support in the past. They may have been your sounding board and reliable ear for many things.
It can be very hard to deal with the fact that your roles have changed, or will change at some point in the future. However, it’s important to understand that, no matter how strong or dominant they may have been in the past, your relationship is going to be different. You will need to be the person who takes control. They will grow to depend on you more and more in the future. This can be extremely tough mentally and of course, when you add the practical challenges on top of the emotional strain, then life can seem very hard.
Accept that things have changed
Accepting that things have changed is the first step. Recognise that the person with dementia will be unable to change their behaviour. You will need to change your behaviour and your mindset. This is hard to do but once you accept and adapt to the situation you’ll feel better, as it’s empowering to know that you’re taking control of the situation. You will need to accept that the person may struggle to remember things and their ability to complete everyday tasks will eventually decline. Make the most of what they can do and don’t dwell on what they now find difficult.
Make new memories
The person with dementia may not be able to remember all of the things you have done together in the past. Don’t dwell on forgotten memories. Make new ones, even if those memories may not last long for them. At least you will remember them. Spending quality time together and doing things together will still help to boost their mood and give you a sense of closeness. They will feel less like a person depending on you and more like a partner or loved one.
Accept that their personality may change
Dementia is a disease of the brain, so it’s important to understand that it could have an effect on their behaviour from time to time. The person may be the same on some days, and different on others. They may be subject to mood swings, anger, tears, aggression or depression. (Talking to their GP if they suffer from frequent mood swings is a good idea). When they become upset or seem down, talk to them about their favourite topics or hobbies. Anything that has brought them pleasure in the past may be a good subject to talk about.
Enlist support from those who understand
Once you’ve had some time to come to terms with the fact that your relationship has changed, it’s important to make sure you have plenty of support. Enlist the help of trusted relatives, or close friends. Make sure they understand what you are going through. If they are trying to be supportive but you sense they don’t really understand what you are going through, find a local dementia support group, where others are going through similar experiences. It’s really important to have access to someone who understands the demands of being a carer who can listen and offer support when you need it. Also being around others in similar situations will make you feel more supported, and less isolated.
Deal with grief
Caring for a person with dementia can feel like a grieving process. If you were close, you will miss the person they used to be. It’s important to treat feelings of grief or bereavement seriously and again talk to someone who can understand and sympathize. It’s worth having a chat with your GP and if you feel overwhelmed or depressed, ask to be referred for counseling if you feel that talking to someone impartial may help. This will give you a chance to tackle your emotions rather than bottling things up, which can lead to resentment and a whole host of health issues in the future.
Understand their grief
The person with dementia may also be grieving for their former self. They may resent losing their ability to carry out certain tasks or remember things. And they may mourn your previous relationship too. Maybe they liked being the strong one or hate having things done for them. It’s important to encourage them to be as independent as possible for as long as you can. If they used to like going out for walks and they can still find their way around, let them go out. Don’t tell them they might get lost, as this will destroy their confidence. You could encourage them to carry ID and also alert neighbours who can look out for them too. Be aware that, like you, they may also need someone to talk to. You can listen to them and let them discuss their feelings, but they may also benefit from counseling or from speaking to a mutual friend or relative. And they may prefer to talk to someone other than you from time to time, as they may not want to burden you with how they are feeling.