Care for Caregivers of Family Members with Stroke

Dr. FUNG Shuk Man, Amy, Ph.D.

Deputy Director, Clinical Health Psychology Centre

Clinical Psychologist

Health Psychologist

Honorary Consultant in Clinical Psychology

As a caregiver for a family member with stroke, it can be all too easy to make your loved one the focus of your life. You may not be aware of the toll the care has on you, because it is very likely that you take on one task after another without knowing that the list of things to do has increased tremendously over time. Be mindful that chronic stress is often the culprit for a range of both physical and emotional problems! The need to balance the needs of not only your loved one but also yourself is most important when the care is going to be long-term. You have to take good care of yourself to ensure that the care to your loved one is sustainable. 

Here are some suggestions that can help you balance the needs of your family member with your own health and happiness:

At the start of the caring process, it may be worthwhile to learn more about stroke, and your loved one’s condition and prognosis. These are beneficial as you can know what to expect and how best to care for him/ her.

This involves:

• getting to know more clearly about the impact of the stroke on him/ her both in the immediate and long-term future. So you know what to expect and you can gauge how you are going to support him/ her in the recovery and rehabilitation process.

• learning more about stroke, and the risk factors for a second stroke. You may learn how to make healthier meals for the patient, how to encourage the patient in doing more exercises, and ensure medication compliance.

• sorting out your loved one’s needs for help, and plan for meeting them. He/ She may need personal care in daily life, e.g. assistance in self-care such as bathing, dressing and toileting; in taking medications, attending medical appointments and in managing matters like finances. You have to be realistic in how much you can offer or take on. Seek the help you need in case you have too many on your plate at the time.

• learning the common emotional responses of people in similar situation. This helps you put yourself in his/ her shoes and understand how he/ she finds himself/herself in the situation. Showing empathy for and acceptance of his/ her emotional reactions is important, as it gives the person some sense of solace and support as well as render them more strengths and motivation to comply with treatment and rehabilitation.

Supporting the family member with stroke in the rehabilitation process

Stroke rehabilitation can be demanding to patients especially if the stroke is a major one with resultant disabilities and impairments. Patients have to adjust to the implications on their daily functioning while making efforts in rehabilitation to hopefully regain some functional abilities:  

• Caregivers have to be prepared for behavior or mood changes in the patient. The losses from stroke, whether temporary or permanent, can be extremely upsetting and distressing to the patient. Give time to allow for a grieving period. It is a necessary step towards accepting life after stroke. Studies showed that stroke patients are at risk for depression, and a significant proportion of them did get affected. Some of them may become quite lethargic and have seemingly given up. Caregivers therefore have to be very sensible and sensitive while interacting with the patients. One thing to bear in mind is to avoid telling them that you know how they feel, because you simply may not know enough without going through the experience. Instead, it may be sufficient for you to offer your patience and support. Conveying your understanding of them, giving recognition for every effort they have paid in rehabilitation, and at the same time offering your support and help sensibly can bolster the patient’s morale and foster efforts in the process. 
  
  
• Some caregivers may err in pushing their loved ones to carry out whatever is good and recommended for them, e.g. in the amount of daily exercises to do, or food to eat, without considering the need for flexibility in rehabilitation. Stroke patients may be frustrated easily because of the failures or difficulty they experienced in doing certain things which their stroke has brought out. These experiences of failures could be saddening and devastating to their sense of integrity and hope. It is also important for the caregivers to be mindful that, while encouraging him/ her to practise new skills in a supportive way, one should refrain from jumping in to help too easily. Patients should be allowed to learn to do things for themselves, as even small accomplishments as a result of their own efforts will give significant sense of satisfaction to them. This process is important for them to feel more self-reliant and confident.

• You may consider joining support groups or programmes for carers so that you stand a better chance of having proper emotional ventilation and tangible help in the caring process.

• You may also need to seek help from outside sources. Apart from hiring someone to share the care work, getting outside help can make all the difference in your ability to balance your life with your loved one’s needs. Help from within the extended family or respite care from NGOs can offer you the chance for relaxation, and normal social activities that you need as a human being.

• If someone offers you help, learn to say “yes”. If you don’t need the help right away, tell them. But it is always good to know that someone’s help is forthcoming and available.

Taking good care of yourself

Some caregivers are so drowned in the care of their loved ones that they forget that they have a life of their own. They will be plagued by a sense of guilt when people suggest that they should take a break or seek some fun activities for themselves. But they need to remember that it is not selfish to take time for their own needs. And they do have a right to their own time and activities, as they are essential, beneficial, and always refreshing and recharging when time for relaxation and pastimes can be set aside. 

It is also important not to isolate oneself. Making time for social activities, chatting over a cup of tea or coffee or mere catch-ups with friends can be uplifting and invigorating. So be open to the good things life has to offer.  It is good to share your frustrations, anger and sadness with someone other than your loved one. These feelings are normal, and in order not to dwell on them, you need to express, recognise and accept them. This is where friends and support groups can play an important role. The sense of connectedness and the understanding that people and help are there for you makes a big difference to you when you are shouldering the caring task. 

Equally important is to take care of one’s physical health. Chronic stress and its impact on your sleep and rest often lead to health problems in the long run. And you can’t afford to lose sight of minor health concerns. Make sure you eat a healthy diet, have adequate exercise, and enough sleep.