Some ailments are so dangerous — so heartbreaking really — that they tend to wear out the caregiver as much as they distress the patient; especially when a parent or spouse suffers from Parkinson’s Disease. Let’s do a quick recap of what is Parkinson’s Disease (PD). It is a degenerative illness which affects the substantia nigra, the midbrain as we often refer to it in common parlance. The neurons there begin to die causing loss of control over movement. This can present as uncontrollable shaking of the hands, or head, or tremors in some other part of the body. It might also show up as stiffness, making even turning from one side of the bed to another, or getting out of a chair a huge challenge.
Put yourself in the place of the caregiver. A loved one — mother, father, sibling, husband, wife, brother, or sister — has been seriously affected by PD, and needs to be cared for. Imagine, you have placed a cup of tea in your mother’s hand, as she is no longer able to pick the cup from the table, and she spills most of it on herself as she can’t hold the cup steadily any longer. You are terrified that she might have been scalded. You understand that she needs to have her clothes changed (adding to the washing), but are vexed that she couldn’t even drink her tea. This is just one incident I one morning. However, it serves to illustrate the physical and nervous stress that the Parkinson’s patient’s caregiver has to undergo over an extended period.
There’s no way your patient is going to get well and recover completely, but the mortality rate is pretty low. PD patients have been known to live with the illness for twenty years and more. This means that you need to learn to cope with these stresses and sheer physical strain for years.
One of the best ways to cope is to accept a situation without rancor. It becomes easier when you educate yourself about which symptoms you need to watch out for, which is going to progressively get worse, and which might be kept from worsening. Learn what could be the prognosis, and discuss thoroughly with the doctor. This way you’ll have a better notion of what your treatment options are, and what has a better chance of succeeding. You’ll have the psychological advantage of knowing that the care you give isn’t making your patient, usually a loved one, worse. That you are doing your best, but there is only so much a person can do even with the best of intentions. Of course, keeping track of medications, dosages, doctor appointments, prescribed diets, and similar details helps in making the whole thing well organized, and consequently less traumatic for both.
You’ll be astonished at the kinds of results that non-medicinal treatments like physical therapy (PT) and occupational therapy (OT) show up. Better control over the limbs, relative ease of movement and/or increased mobility brought on by physical therapy increase your patient’s confidence; thereby giving you some peace of mind. Occupational therapy aids in swallowing the different kinds of food and drink we serve our family through the day. This, in turn, would ensure that the patient receives sufficient nourishment. So, you don’t have to watch your loved one waste away; or have to endure the kind of situation described earlier daily. Sometimes, even allowing a patient to do daily activities unassisted gives positive results.
Helping your patient do mental exercises will have benefits not immediately observable. Apart from helping to reduce confusion in the patient; it will aid in ensuring alertness. Without these twin benefits, you might soon find yourself being driven up the wall by the things the patient says or does. Facing, or dealing with a thoroughly disoriented patient daily can be quite nerve-wracking. Imagine being mistaken for the horrid teacher in school who punished her for not doing her homework — all because you were insisting that your patient eats properly, or does her exercises to keep her ambulatory!
Try breathing exercises: There are some deep breathing techniques which would help the patient become more focused while keeping you calm if both perform them together.
Taking care of yourself is vital. You must learn to de-stress, and maintain the quality of life — both yours and of your patient’s. It could be something as simple as going for an early morning walk. Don’t neglect yourself at any cost. Pamper yourself at a salon. Go to see a movie. Keep some me-time for yourself. Treat yourself and your patient to some food which has special connotations for both (happy ones), like some ice cream, a sweet dish, or even things like her favorite pizza, or other delicacies. Listen to music together to unwind. If your patient has been ill for a long time, you might need to go away on a vacation for a while. Ask your other family members to help out.
Accept changes in the relationship as the disease progresses. It isn’t strange for one or the other becoming resentful of the patient’s dependence on the caregiver. You also need to watch out for depression and/or mood swings. Don’t make the mistake of trying to handle it alone. Seek professional help.
Takeaway: Even when a loved one suffers from PD; you don’t stop living. Both must keep living life as naturally as practicable.