Advice for the Family and Friends of those Suffering from Parkinson's Disease
As with any long-term progressive illness, living with Parkinson's disease can take its toll not only on the actual sufferer but also on the people around them. As the Parkinson's sufferer loses mobility and independence, the immediate family or outside carers have to take up the burden.
Fortunately there are a number of things that close family and friends can do to reduce the strain of coping with a Parkinson's disease sufferer, especially as their condition worsens.
Firstly if you are the primary carer then you have to realise from the start that things are going to get tough and that at some stage you are probably going to require the help of others. Don't under any circumstances think that you can do everything yourself; you will only end up run down and tired and in this condition you will be of no use to anyone. Take respite care if it is offered but don't feel guilty at doing so. Also you should try to find friends and relatives that are willing to help, even if it is only sitting with the patient will you take a nap or get a breathe of fresh air. Having an hour to yourself each day will help to recharge your own batteries. Alternatively you can form a support group for other Parkinson's disease carers or join one that already exists. This way you can have someone to confide in during the times when things are difficult and you get to socialise with other people once a week.
Secondly, try not to do everything for the Parkinson's patient. This may sound harsh but doing everything that a loved one asks of you will only lead to a downwards spiral where the patient feels they can't do anything which then affects their emotional wellbeing. Depressive thoughts spurn more depressive thoughts until in the end the patient will not do anything for themselves. Make excuses when asked to do something trivial that you know the patient can do for themselves; the longer they remain mobile the better for everyone.
Thirdly, you can make adjustments to the home that will aid the Parkinson's disease sufferer to move around more easily and locate things that they might want or need. Taking rugs up, carpeting wooden floors, labelling drawers and cupboards and even rooms, installing a sit-in shower rather than a regular bath and adding banisters and rails around the house can make life much easier for a loved one and this will ultimately make life easier for you as well.
Most people diagnosed with Parkinson's disease cherish their independence because they know that at some point they will lose it and become totally dependant on someone else, probably you if it is a parent, spouse or child. Thus, as the disease progresses and everyday activities become more difficult to complete it is common for a patient to become irritable and possibly even rude. As a carer try to remember that they are not being rude to you as a person and that deep down they really do appreciate all that you do for them, even if they don't make it obvious.