Parkinson's Disease: Support for Sufferer's and Carers
Parkinson’s disease can not only devastate the sufferer’s life. Their partner and families may find their worlds turned upside down and have to learn to adapt to the illness as well. Feelings of guilt, pity, hatred, anger and depression are all common among people who regularly look after someone else’s daily needs.
However, for many people the word “carer” is not a term they associate with themselves. It makes the whole thing sound like a job rather than a labor of love. And because of that, all too often the unofficial carer may not get the support they need.
Many countries benefit from a network of health professionals, support groups and charities which can provide vital back up for the carer without making judgments. Suddenly a carer will realize that their feelings of hate, guilt or loneliness are shared by countless others. Those who don’t have access to such a network can find valuable support through Internet forums and chat rooms.
However saintly you may be, the role of carer is a major challenge, particularly if you are elderly and have your own health problems. Likewise, if you are the son or daughter of a parent with Parkinson’s disease, the future can seem quite daunting and you could be faced with many changes to your lifestyle, particularly as the disease progresses.
Claire’s mother was diagnosed with Parkinson’s at the age of 78. “Dad had died a couple of years before and then suddenly my mother had what to me was a terminal illness. She came to live with us about four years ago and even though I love her there are times I hate her. I feel really guilty for being embarrassed by her. She drools and shakes, so I don’t want to take her out. I’ve got no life and I’m not sure if I can cope with this anymore. My husband says put her in a home, but then that’s even more guilt to deal with.”
Claire’s feelings aren’t unusual. People with Parkinson’s can become more demanding as the disease progresses and in some cases their symptoms can become increasingly distressing. But a simple thing like altering medication can sometimes help to improve things. Counseling to help cope with health related issues and physical changes of the disease can also benefit both sufferers and their carers.
Respite care is an option. A regular breathing space can do both the patient and the carer the world of good. After all, the person with Parkinson’s may also be feeling that they’re affecting their carer’s life and be on a guilt trip too.
Nursing help in the home during the day or night can certainly deal with the medical side of things, particularly as the disease progresses.
Richard, 82, said: “My wife went downhill quite quickly. I certainly couldn’t lift her. For a while I was depressed and only went out to get the shopping. In the end my doctor got her nursing care in the home and she goes to a respite home once a month. It has made such a difference to how I feel and I am able to cope even when there aren’t other people around to help.”
Many people who live and deal with people with Parkinson’s on a daily basis believe that recognizing that carers aren’t superhuman and need their independence is very important. It helps them deal with the disease better.
Charities such as the Parkinson’s Disease Society (http://www.parkinsons.org.uk) and the American Parkinson’s Disease Association (http://www.apdaparkinson.org) provide valuable support and information for carers as well as sufferers.