Dr Nor'izzati Saedon Internal Medicine Specialist, University Malaya Medical Centre
Slow dancing with a stranger. That was how Meryl Comer, an award-winning journalist, once described her caregiving for her husband, who had Alzheimer’s disease. Caregiving is a noble vocation, but it is also a sacrifice borne out of love, one that can drain the caregiver both physically and emotionally. Dr Nor’izzati Saedon, an internal medicine specialist as well as a member of the Malaysian Society of Geriatric Medicine, kindly takes time from her busy schedule to address some common issues faced by caregivers today.
Ramona (not her real name) cares for her elderly father. A housewife, she juggles her role as a caregiver along with being a wife and a mother of two young children. She is constantly stressed and exhausted, and she sometimes loses her temper in front of her father. Ramona feels that she is failing her father as well as her family.
Dr Nor’izzati: Ramona’s predicament is actually a common one among caregivers. For caregivers in such a situation, here is my advice:
- First, accept that we are human – we cannot succeed in everything because that is impossible. Know our mental and physical capabilities, and be honest about our limits.
- Plan on how we can best provide care for our loved one both in the short term and long term. Our plan should also take into account our own needs and the needs of other people who are dependent on us. To help us plan better, we can attend short courses, talk to doctors and nurses and do some research online.
- The first three to six months of caregiving are always the toughest. During this period, we should reach out to others who are going through the same journey for support. There are caregiver support groups, in person or online, that can provide advice as well as a listening ear. I also feel that physiotherapy sessions at the hospital are a good outlet for caregivers to meet and compare notes or experiences with one another. Experienced physiotherapists and occupational therapists are often willing to share insights and ideas on how to best care for loved ones. Watching how they interact with their patients is also a good way for us to improve our communication with our loved ones.
- Studies have shown that caregivers have a higher risk of developing depression if they neglect their own well being. Thus, take an hour or two each day to recharge by doing something we enjoy – grab a coffee, take a walk, go to the gym, etc. Also, take time to tend to our spiritual needs (through prayer, meditation, etc).
- We don’t have to do anything alone. If we can afford it, we can hire a maid (full or part time) to help. Otherwise, we can enlist our siblings, our partner and even our children. They may need some time to understand how to care for our loved one, but in the long run, they will be a big help.
- To lift our spirits when we are down, we can attend motivational classes or listen to motivational speakers (there are many clips on YouTube), read inspirational books or talk to people who understand what we are going through (such as members of a support group). We can find fellow caregivers on social media such as Facebook, Twitter, Snapchat, Pinterest, etc who are willing to share and advise. Remember, we are never alone, so don’t lose hope!
Sara (not her real name) loves her father, but she soon feels trapped by her role as his caregiver. All her time is spent caring for him, and she soon misses her old life. “The rest of my family can do whatever they want, but they expect me to just drop everything to take care of a sick old man,” she complains. She has tried asking them for help, but they always say they are too busy with their own families.
When someone like Sara becomes a caregiver, he or she must accept that there will be significant, even big changes to the person’s life. However, this does not mean that the person must completely put his or her own life on hold. It just means that a little more planning needs to be done.
For example, Sara may want to go on a holiday. She can plan ahead for this, perhaps by engaging the temporary services of a nursing care facility to take care of her father while she is away. Alternatively, she can plan for staggered breaks, such as taking two or three weekends off, by hiring a helper to step in during those weekends.
When it comes to family members who leave all caregiving responsibilities to the caregiver, like Sara’s siblings seem to have done, she cannot force them to help, but she can try to slowly change their ways by bringing them along to the clinic for her father’s medical check-ups. The doctors can be good allies in helping these families understand the need for the entire family to support the caregiver’s efforts.
Universiti Malaya Medical Centre (UMMC) holds clinic sessions that bring together caregivers and their family members, encouraging them to open up, exchange opinions and discuss ways to improve the caregiving situation together. Sara and other caregivers may find such sessions useful. To check out the sessions, just drop by the General Geriatric Outpatient Clinic at Klinik Perubatan 3 on Friday afternoons.
Lin (not her real name) is a caregiver for her mother who is suffering from dementia. Her mother constantly makes unreasonable demands, and often becomes verbally abusive when Lin fails to please her. Lin is overwhelmed, but she is afraid to confide in anyone, as she fears that people may view her ‘failing’ as a sign that she is not a good daughter.
For care-receivers who have dementia or other conditions that affect the brain, it is not uncommon for them to experience personality changes. A formerly patient and loving parent may become irrational and demanding. They may also become verbally and physically abusive.
It can be difficult to care for someone we love, only to be made to feel unappreciated and unloved. We may also feel that we no longer know our loved one – he or she is now a complete stranger.
These emotions are only natural, but we should not allow them to consume us. It is our loved one’s disease that is making him or her behave this way. Diseases that affect the brain can make our loved one say things out of frustration or without basis. Often, our loved one is not aware of what he or she is saying or doing. So, blame the disease, not the person. Doing so will help us to better cope with the situation.
Here are some things that caregivers such as Lin can consider doing:
- If a situation becomes too much to handle, take 15 minutes to calm ourselves and gather our feelings. It is fine to leave our loved one alone to do so, as long as they are in a safe environment.
- Do not concern ourselves too much with what other people think of us. We should instead take comfort in knowing that we are doing our best for our loved one.
- Having said that, we should protect ourselves if our loved one becomes violent. Keep sharp and dangerous items out of this person’s reach. We can also consult a physician for advice; some medications to calm our loved one when he or she becomes agitated and aggressive may be useful.
Rama (not his real name) and his wife care for his father, who has an advanced stage of cancer. The doctors recommend end-of-life care to make his father’s remaining days as comfortable as possible. Rama, however, feels overwhelmed at the thought of losing his father, and finds it very difficult to be even in the same room as him, much less care for him. “Sometimes I wish that he would pass on soon, so that I can stop feeling all this hurt and pain inside my heart,” he admits.
Caring for someone dependent on us is a very physically and emotionally demanding task – it can be overwhelming and even draining. For loved ones who are at the end stage of their life, it is normal for caregivers to feel helpless, as there is not much they can do for the loved one at that time. Sometimes, they may also be reminded of their own mortality – they are aging, and they too will pass on one day – and this realization may only add to their grief.
During this period, caregivers such as Rama should seek emotional support. Here are some suggestions:
- Find a person to talk to, in order to unload our stress and anxiety. A caregiver support group will be tremendously helpful.
- It may also be good to discover (or rediscover) spirituality (such as by joining a religious group), to find comfort when faced with issues such as the mortality of life.
- Meditative and relaxation techniques such as yoga can also be helpful.
- If we feel overwhelmed or confused by the care needed by our loved one during this period, it may be good to hire a part time qualified nurse to make daily or weekend visits.
- If our loved one needs more specialized care, we can consider locating a good nursing home for him or her. After placing our loved one in a home, we should still visit regularly to monitor the care given to our loved one. Our visits will also provide comfort to our loved one (who may need time to feel safe in a new environment), and knowing that he or she is receiving the best professional care will also be a source of comfort to us.