It can seem like a living nightmare. The person who meant so much to you, who was your companion, friend and lover is now lost to you, even though you can still see and touch them physically. Or this may be happening to a parent, whom you trusted and who cared for you – but now you are the carer. You’re having to cope with some really difficult things and at the same time you are trying to be kind and patient. Life can seem very cruel, and sometimes it’s hard to keep going.
Looking after your loved-one may be the only thing on your mind, but you must also look after yourself. What would your dear one say about this, if they were truly themselves? Would they want you to sacrifice your health and wellbeing? It may be a cliché you hear from your friends all the time, but it’s true. If you go under, who will then be there for your dear one? For this, if for no other reason, you should prioritise your own needs. Yoga, mindfulness, massage – even a cuppa with pals can help.
Please don’t be too proud to grab all the help you can. Explore all available financial benefits and grants, and get proper advice so you know you haven’t missed anything. There is sure to be a charity that raises money for your cause – can they help you in any way? Don’t underestimate the usefulness of practical appliances like hoists and special locks. If friends and neighbours offer help, take it! People love to be needed and you aren’t imposing. Take advantage of respite care, whether this gives you a chance to have a day out or a longer period, for a holiday. You have a right to a life.
Amidst all the distress of disability and dementia, there is usually plenty of stuff that’s very funny. Would your loved one laugh at this, if they were in their right mind? Maybe they would say something outrageous. Don’t be afraid of black humour, or of being ‘nasty’. This is just one aspect of what’s happening and a giggle – even if there is a note of hysteria in it – can really help you cope. Let friends know that you’re open to seeing the funny side, for that could be liberating to them, enabling them to joke too!
Of course you loved your dear one – still do. But relationships aren’t just about ‘love’. They are also about relying on someone, feeling secure and supported, sharing activities, interests, conversations – even having someone to have a go at when things go wrong! For you that is a thing of the past, and you have to do all the giving. So, unless you are an angel you are likely to feel all sorts of negative emotions, such as disappointment, rage, desperation, loneliness, fear and exhaustion. You may feel like running away, attacking your patient physically and you may wish they were dead – you may even feel they’re better off dead and sometimes the thought of helping them on their way goes through your mind. There! I’ve said it! All of those feelings are totally understandable, but feeling doesn’t mean acting out. You cannot help how you feel, so be gentle with yourself, and when it all gets too much, take five minutes peace, if you can. You are doing the best possible job – pat yourself on the back.
The loved one that you’re caring for may not always have been nice. In fact they may have been horrid – even abusive. Don’t tell yourself that their illness wipes the slate clean and means you have to ‘forgive’ them. You may resent them all the more and feel the way they are towards you – and dementia patients can be really awful – is a continuation of abuse. If so you need to talk about this and may need extra help. There is nothing to be ashamed of.
You haven’t failed if your loved one has to be cared for in a home. There will come a time when it is too hard to cope in your house, especially if they are physically much bigger and heavier than you. Caring professionals often have more to give, are better at it than you and enjoy the job! At the end of the day they can go home to their families to rest, leaving other caring professionals to take over. As long as you keep an eye out for your loved-one’s welfare, you are still doing your bit.
Where has the essence of your loved-one gone? If you are a spiritual person you will know that it hasn’t disappeared – it’s just out of reach for a while. Perhaps you can think of the brain as a kind of ‘radio-receiver’ for spirit. That brain isn’t functioning properly now but it doesn’t mean the spirit is gone. Remember how your loved-one was in the good days – that person is still there, so cherish your memories and celebrate anniversaries if you feel like it. Love never dies.
Of course, all the advice in the world can seem empty in those bleak times when you are lonely and drained. That’s when you need our wonderful readers at The Circle, to light a beacon of hope for you, so you can believe in the future and stay strong. Call today!
PUBLISHED: 17 November 2014