November is National Caregivers Month in the United States, and caregivers deserve to be celebrated and acknowledged for their ceaseless care for those in need. Caregivers are the unsung heroes of the frontline of their respective medical spheres, and nobody can truly understand the challenges of caregiving more than a fellow caregiver. The truth is, we sometimes forget that they are human beings as well, prone to exhaustion, stress, and go through moments where it all becomes too overwhelming.
Due to the nature of dementia, caring for a loved one with the condition can be highly frustrating as he or she slowly but steadily loses his or her mental capability and symptoms like mood swings kick in. Not only does a caregiver feel increasingly underappreciated and lonely, the extreme pressure can have a serious impact on their physical and emotional wellbeing. We try to put ourselves in the sizeable shoes of dementia caregivers with some of the common deadly emotions they encounter.
One of the most frequently experiences emotions, guilt is an emotional trap that is hard to avoid. It can be the result of a myriad of factors: perceiving yourself to not be doing enough, or thinking that you’ve said or done something wrong in the process of caring for the individual. According to Dr Alexis Abramson, an expert on ageing, caregiver guilt is not only common but is extremely destructive, making an already stressful situation even more challenging. “It can make you feel tired, weak and immobile,” he explains, “which in turn makes you less effective, not to mention unhappier.”
Rather than burden yourself with the ‘should haves’, recognise that such feelings can be counterproductive at a time when you need to be your best advocate. Do a raincheck on the standards you set for yourself, and aim to keep them real instead of idealistic. Ask yourself if you’ve done all you could, and if you have, acknowledge that your best is enough.
Like guilt, anger is an emotion almost all caregivers experience from time to time. It is never easy committing time and energy to tend to someone, and keeping a cool head is a challenge itself. Anger can be triggered either by direct causes, like criticism over your caregiving style, or indirect factors such as a lack of sleep, appreciation, or release for your pent-up frustrations.
Rather than lose control of your emotions (and tongue) only to regret it later, harnessing this anger and turning it into productive assertiveness is a way to cope with it. “Not all anger is bad,” says clinical psychologist and family therapist Barry Jacobs. “But it shouldn’t be a cue to attack in kind. Rather, it should spur us to think through how to express our concerns firmly and calmly so that those who are offending us are most likely to take in what we have to say.”
If you start wondering why you’re the only one putting in the hard shift while others stand by with their arms folded, chances are you are feeling resentful. As much as you hate to admit it, you may also resent your loved one with dementia for hijacking your life and time. The last thing you want is for your resentment to be misdirected and harm relationships.
“Remember that when you truly focus your attention on the task, the switch to thinking mindfully about your action results in a change in your feelings and behaviour,” advices Dr LuAnn Pierce. Confide in someone you can trust, or let it all out in a journal or blog. Address it early, and the chances of it snowballing will be reduced.
In a study conducted by psychologist John Cacioppo of the University of Chicago, lonely individuals reported higher levels of perceived stress even when exposed to the same stressors as non-lonely people, and even when they are relaxing. Loneliness can affect a caregiver’s mental and emotional health due to the demands for time and attention. As friends drop away and your interaction declines, you may feel even more isolated – itself a risk factor for dementia.
Make it a point to talk to someone about what you’re dealing with. Do not attempt to try and handle everything by yourself; call for respite help if necessary. Allocate time to engage in your favourite hobby, be it gardening or a brunch date once in a while.
Worry can be a positive sign that you are putting your best foot forward. But over-worrying becomes a handicap that can affect a caregiver’s quality of life. Worrying is the brain’s attempt to comfort itself and stems from good intentions and love.
Put the brakes on your obsessive fretting by reframing negative thoughts into positive ones, such as asking yourself, “Rather than worrying, what are the active solutions I have?” or “Is there someone else who can help me?”.
A caregiver can sometimes not take to advice very well, especially since they feel they have taken on the responsibility, and any other suggestions and approaches to do things ‘better’ are unwelcomed. While it may be true that no one knows your loved one with dementia better than you, and that you have the right to protect yourself against criticism, it is good to remember that you can’t juggle all the balls yourself.
Stay open-minded, learn as much as you can, and get support. “One of the frequently unknown roles a new caregiver must take on is the one in which they commit to becoming a lifelong learner,” caregiving expert Elayne Forgie says.
You may think that your loved one with dementia is still around and grief won’t set in. With anticipatory grief, which is the emotion when your loved one’s condition shows no sign of improving and is terminal, it can be as painful and real as post-mortem grief. Grief expert Therese A. Rando, PhD, says, “Anticipatory grief imposes limits on your life. That’s bad enough, but as time passes, your anticipatory grief keeps expanding”.
Waiting for the end can put your life on hold, sap your strength, and prolong anticipatory grief. Keep the end in mind, but live a life that doesn’t solely revolve around that fact. Make time for yourself to embrace everything life has to offer and transmit that positivity to your loved one with dementia.