How to cope with your parent's Parkinson's diagnosis
Last year for Parkinson’s Awareness Week we featured two stories from a father and daughter who shared their experience of one man’s Parkinson’s diagnosis and the impact it had on their family.
Chris’s father, our own Rebecca’s grandfather, Trevor struggled to maintain control over his life as his Parkinson’s began to affect his mobility and ability to speak. He had to leave his wife and home to move into care almost 100 miles away as his country cottage was no longer suitable for his needs.
He was forced to abandon his great love for writing and regressed to an earlier time in his life when he was a naval officer often commenting on the “ship” being in a terrible state and the other residents “quarters” being a mess. Although he did have moments of lucidity his progressive decline led to a brain haemorrhage and his death in 2009.
Chris and Rebecca offer their tips to help you cope with a Parkinson’s diagnosis and manage your parent’s care to keep them in control of their life for as long as possible.
The difficulty of diagnosis
It’s not a simple, straightforward process when it comes to diagnosis. It can be an emotional ordeal with many an appointment. The road to diagnosis for Trevor was slow and during that time it left us in uncertainty about his health issues.
Patience really is a virtue when it comes to coping with your lack of control over the situation. The wait we experienced was tiresome so it’s a good idea to keep the channels of communication open and to remain both positive and persistent. Getting to the cause of any health issue when it first arises is paramount.
The grass is always greener
Parkinson’s is unpredictable. It progresses in different ways in different people. Questioning why other Parkinson’s sufferers seem to have it ‘lucky’ compared to your parent and worrying about it will distract you from spending time with them. Enjoy the moments of lucidness and be there to quell moments of confusion.
Peace, love and understanding
Parkinson’s is hard to understand even for those who’ve experienced it. The likelihood your parent will have symptoms similar to other sufferers is slim. While the well-meaning will offer you advice on the situation its best to stick to what you know about your parent’s Parkinson’s and the symptoms they’re coping with. The sooner you come to terms with what’s happening to your parent the better you and your family will cope with their care.
Never mind what others think
We’d never like to think we’d be embarrassed of our parent, especially when they’ve got Parkinson’s, but other people can be cruel and misunderstand their symptoms quite easily. Don’t let others influence your impression of your parent.
The time you spend with your parent is important both for you and for them. Taking them places they love may need further planning as their health declines but enabling your parent to enjoy life with Parkinson’s will help with their emotional wellbeing and reassure them that nothing has changed in their relationship with you.
A positive mental attitude
Focusing on the positive ways you can help your parent instead of worrying about how to prevent their Parkinson’s from worsening can help to remove stress and anxiety from the situation.
While there are many treatments to ease your parent’s symptoms they’ll benefit enormously from having their family and friends around them, supporting them as they face such a degenerative disease. Love, acceptance and friendship go a long way when caring for a parent with Parkinson’s.
Immobility doesn’t mean limitation
Your parent may find that their mobility issues start to become more pronounced as their Parkinson’s progresses. The pressure on their partner to care for them can become a burden they may not be able to carry by themself.
Buying mobility aids and equipment to help your parent remain in their own home for longer as well as hiring carers to help with day-to-day tasks can keep your parent independent and relieve the caring responsibilities from their partner.
Parkinson’s affects more than just your parent
However hard we try to shield our children from getting hurt or feeling upset, a grandparent’s illness can affect them just as much as us. Talking about your feelings and explaining your parent’s Parkinson’s to your children can help both of you to cope with their changing behaviour and declining health.
Sometimes it all gets too much
It’s easy to get frustrated and upset - your parent isn’t able to enjoy the things they once did. It’s a difficult period of adjustment not just for your parent but for you also. You can dwell on the “ifs”– if we’d got them diagnosed earlier would their Parkinson’s be as bad, if we’d managed their symptoms better we could have prevented the progression – but it’s just not the case.
Trevor sometimes believed he’d been wrongly imprisoned and asked us to help him escape. It was awful. There will always be times that test you, that are painful for you and your family but the best you can do for your parent is be present and join them in their reality.
Take time to look after yourself too. If you’re not coping talk to someone who can help you come to terms with your parent’s health issues. Asking for help is something more people should do – there’s no failure in admitting that you need support.
Parkinson’s UK is the leading support and research charity for those living with Parkinson’s across the UK. For more information on Parkinson’s you can call their helpline 0808 800 0303 or email firstname.lastname@example.org.
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