Information For Carers

Information FOr Carers

The impact of Parkinson's goes beyond the person who has been diagnosed with the condition. Partners, family members and friends of the person who has been diagnosed with Parkinson's will be well aware of how challenging the condition can be for them and those closest to them.

Parkinson's is a progressive neurological condition that affects people from all walks of life. It is quite common, with approximately 80,000 Australians diagnosed. Add in family members and you have 800,000 people affected by Parkinson's.

Early Years With Parkinson's

When first diagnosed, many partners report feeling very irritated by the suggestion that one of them is a 'carer'. Neither one sees themselves as taking care of the other.

"Eventually we stopped frothing at the mouth when we heard the word 'carer'. Five years after diagnosis, we sometimes mentioned 'carers' in a general way.   Even now, after nine years we are still affronted by the suggestion that Pete is my carer Jan, age 65"

It may take ten or fifteen years to slowly move from two adults taking care of each other to a relationship of a carer and a person with Parkinson's.   Eventually, the person with Parkinson's has someone in their life who meets the legal definition of 'carer'.

Early Dealings With Health Professionals

You spend a lot of time with the person with Parkinson's and can provide a unique insight into the situation. You are entitled to attend medical appointments to support the person with Parkinson's.

Planning For Your Future

Planning ahead is always a good idea and even more important when you receive a diagnosis of Parkinson's.

It is important to ask whether your savings and superannuation will be enough to support you both? Here are some strategies to help you with this challenge:

Hospitalisation

Most people spend some time in hospital. People with Parkinson's may have to be hospitalised to manange an unrelated medical condition or to improve the medical management of their Parkinson's.

Read the following brochures which deal with medication and hospitalisation for someone with Parkinson's:

Medications to be given with caution to people with Parkinson's Disease (for Health Professionals)
Parkinson's Disease and Hospitalisation : Guidelines
Medications to be used with caution for people with Parkinson's Disease
Medications used in the treatment of Parkinson's Disease

The Later Years With Parkinson's

Becoming a Carer

A carer is a person who provides ongoing care or assistance to another person who has a disability, a chronic illness or a mental illness, or who is frail and needs assistance in carrying our everyday tasks.

As things gradually change and the condition progresses, your lives are gradually changing. The person with Parkinson's finds it harder to do everyday motor tasks such as, slicing bread, turning over in bed, taking things down from the top shelf. They may decide to stop driving. They may need help taking a shower or going to the toilet. Your mutual partnership is slowly moving to a more dependent relationship and one day you realise you have become a carer.

Challenges for Carers

The changing nature of Parkinson's symptoms makes caregiving a challenging experience. Every person with Parkinson's is affected differently by the condition, which means that every carer's experiece will differ. Being a carer is very rewarding, but it can also be quite stressful.

It is important that the person with Parkinson's maintains a sense of control. It is good if they can decide when to undertake a major change, such as giving up driving. Try to avoid saying 'you must or you must not'.

Communicating With The Person With Parkinson's

"I really found it challenging to accept my husband's masked face - it took me a long time to understand I must look past this and to the person.I had to stop trying to identify just with the face. We are back to the great discussions we used to have and gain greater enjoyment in just being together, listening to our favorite music". Tracey age 72

"Our Parkinson's nurse specialist was very helpful when I lost patience. I tried to do everything for Stuart. I just ended up so frustrated - but the nurse pointed out how I was turning Stuart into 'something to or for whom things are done'. As I have learned strategies from the nurse, patience has returned. I now allow plenty of time for Stuart to complete his morning ablutions. We have purchased easy-to-slip-on clothes with some velcro fastenings. When meal times seem to become extended I think how great it is to have time to just sit and be". Louise age 68

Caring For Carers

Taking Time Out

Every carer needs time out to re-energise. Go for a walk, do some gardening, exercise or enjoy your special hobby. Activities like swimming, going to a gym or joining a sporting team are all beneficial. Exercise can improve physical health, increase energy levels and help clear the mind. Find time to relax, because being a carer can be demanding and stressful. Try meditation or Tai Chi.

Carer 'burnout' is a kind of emotional and physical exhaustion. It happens when carers try to shoulder all responsibility. To help avoid this, you need regular breaks from the person you are caring for. You will then return to them refreshed and able to impart new enthusiasm into the daily activities of your partnership. Encourage them to continue with exercises and hobbies, and meeting family and friends while you are away.

Respite Care

Planned respite care offers some scheduled time out. You can take a break knowing that the person with Parkinson's is well looked after. Respite care allows you to have personal free time for a few hours a day or several weeks.

Support For You

Support and information can make a significant and positive difference to the lives of people living with Parkinson's, their families and carers. Parkinson's Tasmania provides a range of support services to assist in managing the condition and improving the quality of life for all those involved with the care of someone living with Parkinson's.