“Being a carer for someone with dementia can be one of the longest and loneliest experiences.”
-by Tommy Dunne
“Hi, it’s Tommy reporting. I’d just like to say a little bit about caring, and some advice for carers. To survive the caring process you need to look after yourself and not judge yourself too harshly. I’d like to say others won’t, but I know society. Guilt can be a very tiring emotion, consuming energy that you need for other tasks. Caring is hard work and extremely stressful. Some emotions that arise, such as grief and anger are healthy responses to changing circumstances. These emotions can be useful, helping us to move forward, where other emotions, such as guilt, can be destructive leaving us feeling powerless and stuck.
There will be times when you may feel like you don’t even like the person with dementia that you’re caring for, let alone love them. But this is a common and normal feeling. You may sometimes want to walk away from your responsibilities, or even wish that the person with dementia was dead. But again this is a common and normal reaction. I sometimes feel guilty for not being able to give my wife the love and attention that I used to. But dementia will rob you of some emotions.
Try not to judge yourself, you can’t help control how you feel about the person with dementia, but you can help control how you respond to those feelings. You need to talk through your feelings with others who you feel will understand what you’re going through. Look for ways of expressing your irritation away from the person with dementia, and finding the space and time to have a good shout. Everyone needs to recharge the batteries. But don’t bottle up your feelings. Explore ways to relieve the tension.
Don’t feel guilty if the person with dementia has to go into respite. The first experience of separation often makes carers feel guilty and unable to relax. It’s easy to feel trapped if you are a carer. Perhaps you want to continue a full-time career rather than devote yourself to caring. But you feel that this is selfish. Perhaps your partner developed dementia just as you were about to end the relationship.
Carers often feel that moving a person into a home is the ultimate betrayal, you may feel that you’ve let the person down. You may have promised the person with dementia that you’ll always look after them, at home, and now you have to break that promise. I’ve told my wife and family that they should never feel guilty about putting me into a home. There is more that can be done to keep the person with dementia at home.
Many carers initially feel some sense of relief when the person with dementia dies, and feel ashamed and shocked that they’ve had these feelings. Relief is a normal reaction. Many carers block too much of their grieving process through the illness, as the person with dementia slowly vanishes. But you must remember to always put yourself and your family first throughout the dementia process, as the person with dementia we need our carers to come first. Every day will be difficult and different, and it will not get easier. Each time a loss occurs you have to make adjustments and carry on. Worst guilt you can feel is not feeling guilty.
But there’s no such thing as the perfect carer. You remember that it’s all right to make mistakes, and it’s important not to be too hard on yourself. Don’t try and do everything yourself, be realistic about what you can achieve. And ask for help from the beginning, not when you’re really stressed out. Try to remember that everyone gets frustrated with their partner from time to time, and it’s the same for the person with dementia. Remember, you can’t change what’s happened in the past, but can still affect how the person with dementia you care for feels today.
Being a family carer for someone with dementia can be one of the longest and loneliest experiences you will ever have. Grief is an emotional response to loss. I’ve often heard my wife talking about how she grieved and weeped for the first three years. Make yourselves really feel what’s inside of you. Let the tears cleanse and relieve the pain. God bless all you carers.”
