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The impact of the diagnosis can add an extra strain to relationships, amplifying any existing difficulties that there may be, especially in the marital relationship. How you cope with the news of the diagnosis will probably be related to how you react and how you have reacted in other times of crisis. Reactions and responses to the situation will be different for each individual and for each family.

All feelings and emotions experienced at this stage: shock, disbelief, anger, maybe a sense of feeling trapped, are valid and quite normal. However, what you do with them is important. They need acknowledging. Suppression or denial of these feelings can lead to unhealthy relationships and lack of well being. These feelings have to go somewhere. Inappropriate discharge of feelings can be detrimental to what may be already tense and fragile relationships.

Moments of grief and loss may be experienced about your relationship and any new and limiting factors on it. Grief and loss can be very complex, because your partner or parent has not died, they are very much with you. Though aspects of their life, and you life together may become very different as the illness progresses.

Disappointment about expectations and hopes for the future may also be experienced, accompanied by some sense of confusion. You may have questions around your relationship with the person with Parkinson’s.

There may be feelings of anger and frustration for example about feeling burdened about the future, the changes that you may need to make within your own life.

For the person with Parkinson’s disease there may be a whole package of supports and services available for them. The impact and affect on family can be dependent on the level and type of this support; the level of progression of the disease and the adjustment to treatment. Caring may become an all consuming responsibility, finding out all the information, meeting professionals, making decisions. Judging yourselves and your family in relation to how you see others’ may be a natural reaction but it is not helpful behaviour.

At the time of diagnosis, although it may not seem at all possible, it has been shown that good support can be crucial. It can also be a time when existing supports of family and friends can be challenged. Talking to others who have been through this experience, finding professional help and being around those people that can listen and be there for you may help you to maintain your sense of self and for you to find hope in what may seem the most devastating of circumstances. Being able to communicate your feelings will help to reduce feelings of isolation and helplessness.

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Ongoing impact

Over time the tension and wear and tear of caring may take its toll. But the strength and resilience that people show in such circumstances and the ability to adapt is amazing. This may be a balancing act – looking at what is best for the person with Parkinson’s but also taking the needs of you the carer into consideration. Compromise has to be reached especially around what you can survive emotionally. In fact other members of the family, especially those in a caring role need to take care of themselves in order to be able to be there for the person with Parkinson’s. It is vital that the carer explore the possibilities of looking for and receiving their own support so that they may then bring new and fresh energy into the caring relationship.

Caring for someone with Parkinson’s can be tiring and stressful. When you are caring for others it is easy to forget to care for yourself. It may be difficult to find time to focus on yourself and your needs. It is very important to do so – it can prevent frustration and burnout. A burnt out, exhausted and angry carer is no use to anyone least of all themselves. Self care is about taking time out for self, to revitalise, nurture and nourish.

You may feel guilty about needing or wanting some time out for rest, socialisation and fun. Everyone deserves regular and ongoing breaks from work – including caregivers. Caring can make it difficult to find and more importantly to make time for yourself. It is important to build this time into your daily routine, so that in time it can become a way of life. Living a life of balance is important. It is important to eat well, to exercise and to get a good nights sleep, as well as having other social contact. When you do not take care of yourself, you are prone to increased anxiety, depression, frustration which will make it more difficult for you to be there for the person that you are caring for. You cannot stop the progression or impact of Parkinson’s disease, but there is a great deal you can do to take responsibility for your personal well-being, which in turn can help the person with Parkinson’s and begin to move towards getting some of your own needs met.

If taking time out is new for you it may be very difficult to do so. Asking for support from others in order to make time for this ‘time out’ may also be difficult. Remember – ‘you are worth it!’

You may feel that people will judge, think badly of you or you may even think it is ‘selfish’ to do so. Try replacing the word selfish with self-care. When did you last do something that you really enjoyed?

Counselling can be a part of this process of moving towards caring for self.

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Counselling

Some times sharing your feelings with a counsellor, support group or with another caregiver in a similar situation can be a great way to release stress. As well as reducing isolation and realising that you are not the only one in this position it can also be a way of getting helpful advice.

Counselling can be of support at different times, initially to help come to terms with the diagnosis and later on as there is progression of the disease.

Counselling can offer :

·	An ear to listen 
·	Support in sorting out reaction
·	Support in coming to terms
·	Ongoing help in self care

It gives you a time to acknowledge that you are feeling frustrated and angry and jealous with a non-family member who will not be hurt or affected by these feelings.

It is about empathy rather than sympathy and is a searching human relationship with a focus on finding creative responses to life problems. In a non-directive way, it can help you find your own power and solutions to your own unique set of circumstances.

Going for counselling is not giving in nor a sign of weakness. In fact it can take a lot of courage to share your difficulties with another.

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It is important when looking for a counsellor that you find someone that is qualified and accredited. Ask your counsellor about their training background and how they work. Be sure that this is the person you feel comfortable to work with. There are many different styles of counselling and within that many different personalities! Allow yourself the time to find the one that is right for you.

Where a crisis is viewed as an opportunity, rather than a threat or a danger, people develop new and better coping skills. By working through the situation, by owning, taking responsibility for, and dealing with the mixture of emotions and feelings as they occur, people can create better understanding and stronger bonds.. Sometimes what can initially be viewed as a crisis – like the onset of Parkinson’s – can actually, in the long term create better familial and marital relationships.

Michele O’Brien is a counsellor with SouthWest Counselling Centre in Killarney, County Kerry and also in private practice SouthWest Counselling Centre offers affordable and low cost counselling and has a range of different counsellors both male and female. They can be contacted by phone 064 42503 or email kcentre@eircom.net

Or contact Michele by phone 064 42503 or email mob11@eircom.net

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