What are the role of caregivers?

What are the roles of caregivers?

The are many roles of caregivers in the management of PD. The most important roles are as follow ;

a) To provide the assistance needed for patients to carry out their daily activities

Patients often have difficulties in carrying out their daily activities such as bathing, eating meals, walking, dressing up, etc. I remember a PD patient who has a wife who suffered from Alzheimer’s disease. Despite having the ability to walk round the house and even driving car, she had a severe memory loss that affected her own daily activities. Whenever she had to go shopping, her husband always had to follow her on a wheelchair so that she would not get lost at the shopping center. Thus, both husband and wife seemed to complement each other. One had difficulty walking while the other had difficulty remembering whatever she did. Despite this, his wife managed to help out in his daily activities. This case illustrated that even a sick housewife can play an important role as the caregiver of a PD patient.

b) To provide the moral support

It has been reported that 20-40% of PD patients are depressed. I personally believe that the actual percentage is much higher than this figure, because depression is often unrecognized. Depression is the most common psychiatric disorder in PD. In addition to medications (antidepressant), the moral support of caregivers is useful in alleviating depression.

I know an elderly patient who became depressed when her husband passed away. To make the situation worse, her children sent her to an old folk’s home. She lost hope of life and became bed-ridden. This illustrates the importance of having a supportive and loving family in the management of PD.

c) To supervise patients’ medications

Caregivers can be very helpful in certain situations - patients cannot reach out to their medications due to difficulty walking, patients have too many different drugs that they forget which and when to take. Caregivers also can help to monitor the medication of patients – some patients who have great difficulty walking may “overmedicate” themselves, leading to side effects such as hallucination and confusion.

d) To help patients in the “rehabilitation” process

Rehabilitation is a process whereby doctors and other health personnel help patients to recover their physical, mental, social and occupational function. It is a very slow process that can only work if the patients have very supportive caregivers. In fact, the rehabilitation program will certainly be unsuccessful if the caregivers do not actively participate.

One example is the role of caregivers in the maintenance of physical mobility of patients. I remember a PD patient who had difficulty in walking due to slowness of leg movement. She also had a tendency to fall backwards whenever she tried to stand or walk. She had a very good maid who always stood behind her when she walked. What the maid did was remarkable – she “pushed” the patient’s leg forward each time the patient took a step forward. By standing behind the patient, the maid also prevented the patient from falling backward. As a result, the patient could walk round her house for daily evening walk. The patient would not have been able to do this without a good caregiver.

What if all the children are busy working and patient has no spouse?

It is advisable to hire a maid by contacting the relevant agency. If a maid is properly trained, she can carry out all the instructions given by the doctor. She can be taught to serve medications at the right time. She can also accompany the patient whenever there is any need to move round the house, such as morning walk. This can boost the confidence of patients so that they can move around without fear of falling down. In fact, I have encountered some maids who have done an excellent job in taking care of PD patients.

What about sending patients to nursing or old folk’s home? I personally do not agree with this idea, except in certain situations that are mentioned in the following section. Patients always love to stay at home with their children. Moreover, hiring a maid only costs about $600-700.00 per month while sending patients to nursing or old folk’s home usually costs about $1300-1500.00 per month.

How can caregivers cope with their stress?

Caregivers are actually ”patients” because they are subjected to physical and mental stress. Whenever I see my PD patients during the follow-up, I also try to probe whether the caregivers are “worn out”. When I discover any caregiver who has difficulty coping with PD patients, I suggest the following ways to overcome the problem :

a) Allocate some time for entertainment and sports program

Caregivers should spent a few hours per week on any recreational and sports activities so that they can relax. This can help in reducing stress and anxiety.

b) Taking a “break”

Caregivers should give themselves a period of complete rest so that they can recover from the physical and mental stress of taking care of patients. There are many ways to get a “break”. If the patient has several children, he / she can stay with each child on a “rotation” basis. If there is nobody else to take care of patients, one can send the patient to nursing or old folk’s home. This is known as the “respite” care. This is morally not wrong as it is only a temporary measure that allows the caregiver to have adequate rest. There is no point taking care of the patient when the caregiver is already very tired or stressed up.

Sometimes, I do admit the patient to hospital for this purpose, especially when the patient is a government servant (thus exempted from paying the hospital fees). However, there is a limitation because there is usually shortage of beds in the hospital.

c) Support group

Currently, there is no official support group for PD caregivers in Malaysia. However, the Malaysian PD Association does play an indirect role in providing support for caregivers. The monthly meeting of MPDA enables caregivers to come together and share their experiences in taking care of PD patients.

In conclusion, caregivers play a pivotal role in the management of PD. As PD is a long term illness, the physical and mental stress experienced by caregivers deserve attention.