Today’s article is by Kathryn Kazibwe. She shares a few tips on how one can be an effective caregiver to their loved one battling cancer. Kathryn was a primary caregiver to her late mother as she battled breast cancer.
Caring for a sick relative can be extremely taxing mentally, physically and emotionally. Depending on the situation, it may involve personal care like baths and feeding, meal preparation, even some minor medical procedures like administering injections. If you are not a trained caregiver or medical worker, you may be intimidated by the task at hand. I was involved in caring for my mother as she battled cancer and these are some things I learned.
Create a routine
A routine will help you keep track of everything. Have a set time for meals, medication, baths etc. Use tools like a notebook or your phone to set reminders/calendar entries, keep organized notes of doctors’ visits, keep medication logs both at home and when you’re admitted.
Be an advocate
If you live in a place like Uganda, you know that the health system is barely limping and doctors are stretched thin. In such a situation, things easily fall through the cracks in the medical care of patients. Be prepared to be an advocate for your loved one. Where you feel that something that needs to be done is not being done, speak up respectfully but firmly. Do not assume that the doctor/nurse knows everything about your patient’s treatment. Sometimes the files and notes they rely on are incomplete or incorrect. We experienced this in Mulago Hospital where files would routinely get lost, prompting the nurses to write on loose sheets of paper, which would themselves get lost when the file finally turned up. If you are not alert and organized, you may fail to detect say a missed dose or wrong prescription.
Encourage healthy habits
Have a healthy meal plan for both your patient and yourself, to foster the feeling that you are in this together. Avoid isolation both individually and together with your patient. If they are bedridden, try to keep their room well-lit and well-ventilated, and spend ample time with them talking about things other than their illness. If possible, do exercise together. Take walks outside in the fresh air. Laugh. Find as many ways as you can to keep your minds in a positively active space.
When you do the same thing over and over it is easy to go on autopilot. My routine was; get back from work, make juice, have tea, rest, have supper, rest, go through Mum’s evening routine, put her to bed, go to bed. Eventually I found myself rushing through the motions, seeking those precious moments of rest. It is easy to forget that you are caring for a person who needs affection and attention. It gets lonely for them, especially if they are bedridden. So do not treat them like a chore. Talk to them, listen, and empathize. Be conscious of where you both are, right now.
As the primary caregiver, you will feel responsible for every aspect of your loved one’s care. You may be tempted to hold on tightly and not accept help. But this can be dangerous for both you and the patient. You may feel like you are the only one who can provide the best care for your loved one, but that is not true, and it is simply a trap you are setting for yourself. Allow the people around you to help. Involve them in your care plan. This will give you time to rest, which brings me to my next point.
It’s been said, and I’ll say it again; you cannot pour from an empty cup. If you do not care for yourself, you will not be able to give the best care to your loved one. The stress of regular doctor’s visits compounded by worry about your person’s condition can weigh heavily on your mind, and even cause physical symptoms. Even though I had help, the stress still got to me. At one point, I experienced constant and extreme stress migraines that sometimes caused me to vomit. If you are constantly in debilitating pain, you are of no use to your patient, so instead of letting it get that bad, take good care of yourself. This ties in with accepting help so that you have time to recharge. Draw up a care plan with the people available to you and ensure that each person has time for self-care.
We all hope for a full recovery for our loved ones, but sometimes things may go the other way. Your patient may come out of the illness permanently disabled or they may die. Either way, the new normal will take some getting used to. Guilt is a big burden that caregivers face in the aftermath of illness. Do not let yourself sink into the pit of grief and guilt. You did your best and that is what matters. Seek counseling to get you through the grieving process and let people support you when they offer. Take time to accept your new reality and then allow yourself to thrive within it.