The impact of Parkinson’s goes beyond the person who has been diagnosed with Parkinson’s. Partners, family members and friends of the person who has been diagnosed will be well aware of how challenging the condition can be for them and those closest to them.
The Early Years with Parkinson’s
At the time of diagnosis, many partners report feeling upset by the suggestion that they are a ‘carer’. Neither one sees themselves as taking care of the other. As Parkinson’s progresses gradually over many years, it is common for people to take on a caring role gradually.
Early dealings with health professionals
A person with Parkinson’s and their partner or close family member will be dealing regularly with health professionals. Ideally you should have a medical specialist (neurologist or geriatrician) who is knowledgeable about Parkinson’s and with whom you can form a relationship.
You spend a lot of time with the person with Parkinson’s and therefore can provide a unique insight into the situation. You are entitled to attend medical appointments to support the person with Parkinson’s. At times you may need to speak up for the person with Parkinson’s, so you need to feel comfortable asking questions and taking notes.
Following diagnosis, the doctor or specialist may not immediately suggest the use of medications. Eventually however, medications play a big part in the management of Parkinson’s and there are several issues to consider.
Some medications used to treat other medical conditions may negatively affect the Parkinson’s condition. Please download the ‘Medications to be used with caution for people with Parkinson’s’ available here.
Planning for your future
Many people put off planning for their future, especially financial and legal matters. Planning ahead is always a good idea and even more important when you receive a diagnosis of Parkinson’s. It is important to:
- Review your finances
- Reduce unnecessary expenditure
- Set up a budget
- Check your health insurance
- Assess whether savings and/or superannuation is adequate
Although most people do not like to think about legal issues, now is an ideal time to start to put your affairs in order. You may find that your spouse or partner is gradually less able to manage these issues. Over time you will take on more of the role of a carer with increasing responsibility for legal and financial matters.
For peace of mind and a sense of security, there are several legal matter to sort out:
- A Will is a legal document which sets out the wises of a person for the distribution of their property upon death. If you do not have a Will, your assets are divided and distributed according to legislation set by government
- Power of Attorney and Enduring Power of Attorney are legal documents which give another person the authority to make financial and legal decisions on your behalf. They can only be drawn up while you can still sign your name and make decisions. An Enduring Power of Attorney remains valid if you become unable to make decisions but a Power of Attorney lapses at that point
- Enduring Power of Guardianship also gives your chosen representative the power to make choices about lifestyle, medical and end of life choice
Some people may spend some time in hospital. People with Parkinson’s may have to be hospitalised to manage an unrelated medication condition or to improve the medical management of their Parkinson’s.
Parkinson’s can affect the ability to self-evaluate. As a carer or partner, you may perceive the person’s driving skills differently than the person with Parkinson’s. Talking about the issue of driving is important, and it can be helpful to speak with your doctor.
In the early stages of Parkinson’s, drivers often modify their driving habits, for example by driving shorter distances and by avoiding peak hour traffic and night time driving.
In Western Australia it is mandatory to inform the Department of Transport of a diagnosis of 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 out everyday tasks. Family carers may receive income support but are not employed to provide care.
As things gradually change and the condition progresses, your lives are gradually changing. The person with Parkinson’s may find it harder to do everyday tasks. Your mutual partnership slowly moves to a more dependent relationship and one day you realise you have become a carer.
Challenges for Carers
The nature of Parkinson’s symptoms may make care giving a challenging experience. Every person with Parkinson’s is affected differently by the condition, which means that every carer’s experience 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 some sense of control.
You may find that your relationship changes over time as you slowly take on more of the carer’s role. The person with Parkinson’s is physically less able to participate, and their energy swings may make them less willing to plan activities.
Being alert to the feelings of the person with Parkinson’s and encouraging them to join in activities that affirm their self-assurance will be beneficial to your relationship. This may not always be easy but keep trying.
As the condition progresses, some difficulty with communication may be experienced. Be patient and do not rush them. They may have trouble getting their thoughts and words together. Ask questions with simple answers, such as ‘yes’ or ‘no’. Sit or stand directly facing them and give your full attention.
Parkinson’s can impact on sexual relationships. It may affect a person’s physical abilities to be intimate. Couples have their own ideas about what makes for a healthy and satisfying sex life. You and your partner need to decide what works for you. You both may need to change the way you think about or engage in sexual activities. Speaking to a health professional of seeing a sex therapist or counsellor may help as long as both partners are open and willing.
Planning where you are going to live is very important. It may be better to downside your home to something smaller or easier to access for the person with Parkinson’s before the condition forces you to move.
Mobility issues may need to be considered with the person with Parkinson’s. You may find yourself playing a more significant role in dealing with these issues which may include:
- Aids for showering in the home
- Walking and balance aids in the home and while on outings
- Applications for ACROD stickers
- Restrictions on access to holiday accommodation and methods of travel
Caring for Carers
One way to cope with the stresses of being a carer is to have a good support network. Friends, family and colleagues can all support your role as a carer. Trying to meet all the needs of the person with Parkinson’s can cut both of you off from others. You may end up feeling isolated and alone.
Meeting people who are also living with Parkinson’s is a good way to widen your support network. Talking together and sharing ideas and information can give you a great boost. You may find new ways of dealing with Parkinson’s.
Carers may be eligible for government benefits such as the Carer’s Allowance which is free of asset testing but is income tested and is not taxable. Call Centrelink on 13 2717 to find out about your eligibility and to obtain the relevant application forms for this or similar allowances.
Taking time out and respite care
Every carer needs time out to re-energise. Some form of physical activity is always a good option. Exercise can improve physical health, increase energy levels and help clear the mind.
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.
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.
Preparing for the future involves careful and forward planning. In order to access planned respite care, in home package of care or accessing permanent residential care a referral to an ACAT team or accessing My Aged Care online is essential. These processes can take considerable time so discussions and being part of the system are essential.
Looking after your health and emotional support
Caring for a person with Parkinson’s demands physical strength and stamina. If you are not in good health, caring for the person with Parkinson’s will become harder to manage. It is common for carers to neglect themselves in their dedication to helping the person with Parkinson’s.
It is as important to take care of yourself as it is to take care of the person with Parkinson’s. Considering your own needs can be difficult. Carers are often vulnerable to stress related illnesses and feel guilty if their take time out for themselves.
Tips for keeping healthy include:
- Going out and participating in enjoyable activities
- Making time to exercise regularly. This will increase your energy levels and give you a break from your daily routine
- Eating regular healthy meals
- Taking adequate sleep and rest – exhaustion can add to stress
- Talking to a Social Worker, Occupational Therapist, Parkinson’s Nurse Specialist or your doctor for advice on how to live and support the person with Parkinson’s
Parkinson’s may be a life changing illness. It impacts on everyone close to the person with Parkinson’s. You may feel overwhelmed by the changes and increasing needs of the person you care for.
All kinds of conflicting emotions may arise for carers. You may experience:
- Feelings guilty because you do not want to be a carer or because your partner has the disorder and you do not
- Denying that your partner has Parkinson’s or that it has affected them
- Anger about having to look after the person with Parkinson’s or because Parkinson’s has taken your life away
- Fear about the future
- Reward in being able to care for the person with Parkinson’s
- Being stressed by this demanding illness and close to physical and emotional exhaustion
- Sadness to see your loved one suffering
All of these emotions are completely normal. here are some ways to manage them:
- Recognise how you are feeling
- Understand that it is okay to feel this way
- Learn how to release negative feelings
- Focus your feelings on positive behaviour
- Talk about how you are feeling
- Get help for depression
- Learn how to relax
- Be open to the caring and support of others
- Join a support group or join your partner in a support program and do it together