So far, I’ve written about the cancer patient. Since I’ve been one. Yet, I specially want to write about the caregivers, now. Because I’ve been that too. From the moment you heard about this deadly disease, to any time during the caring of the patient, you know it isn’t going to be easy. Usually, cancer treatment is long drawn out, expensive and tough. For that, the caregivers of the patient need to be extra strong, and take special care of themselves too. Or, they wont be able to do justice to the patient or themselves.
I want this blog post to be read by both the patient and the caregivers. It is important for both to be on the same page.
So, to come to the point; How can the caregiver of a cancer patient, find ways to take care of herself (or himself) too? How to be fit for the long haul?
Also, with time, as the patient gets better, you can let the patient do things alone also. For instance, I’ve been going alone for my radiation and therapy whenever needed. I’d have my driver with me, and didn’t tell my daughter, just went off alone. There in hospital the staff is very helpful, and they do the needful. The driver would bring me back. Once I even went without the driver, drove there myself. It can be done. This is best way for a patient to gain more confidence too.
Points to help caregiver:
It is a long-lasting treatment with many ups and downs. So, one person cannot take it all, throughout. Yet, every member of the support group needs to be in the full picture of the treatment.
- Have a cheerful and pleasant personality. Don’t look miserable and depressed. Ever.
- One person cannot do it all. Try to have a support group with the caregiver.
- Caregiver’s fatigue is a fact. This is why, breaks are essential. At those times, hand over the responsibility to someone else. Your friends will be offering help. Take it. I had asked my friend Riffat to come for four days from Lahore. She felt she was doing nothing, but it made a big difference.
- Caregiver, needs to break away from her own other responsibilities. In my daughters’ cases, each one stopped her business and stopped taking on more projects, till I got well. It was a wise step to do. Otherwise, you will crash. You can crash even without any other responsibilities. There is a lot on your plate right now. Be focused. Reduce stresses which you can control.
- The patient too must be actively involved, as much as possible, keep track of medications and what is to be done.
- It is vital for patient to not compare individuals helping her/him. Each person comes with her own strong and weak points. So, you have to be very patient and understanding sometimes. Just focus on the strong points of the person.
- My daughter Waliya, took care of me, day and night in hospitals and at home for a month and a half. I realized, like this she would just crash one day. So, I asked my elder two daughters if they could work out a way of coming to support their sister in caring for me.
- My elder two daughters coordinated with each other, so I had maximum coverage. The other sister came two days before the elder sister was leaving, to provide me maximum help. Here you see how they came and filled up my home with their love, presence and full support to me. I made this video when my whole family was in my lounge. It made me feel great. Waliya & Faizan who also needed their backing, were certainly helped. It was wonderful having them all with me. Bilal and Anya also joined Nataliya, and the home was filled with loving presence of them all.
- Caregivers need to balance quiet times with busy times for patient and themselves. Take plenty of rest when you both can.
- Adding a fun part in things is an excellent idea. Do what you enjoy, and help the patient do what she or he enjoys most. As mentioned above, whenever the patient is well enough, she or he can easily go alone to hospital for treatment.
Types of help needed by caregivers:
My friend Munazza Qasim recently shared a joke with me saying that a cancer patient was asked, to give one of the two, ‘money or your life?’ the patient replied, ‘My life, I’ll need the money for my old age!’
Probably the biggest is the financial aspect of care of a cancer patient. The bills are horrendous. This aspect must be dealt with and all help offered, needs to be taken. This is no time for pride. But let me say, best is for the patient to take care of all the bills herself, or himself. It will make you feel in control and in command. Many times, some family members and friends take responsibility of one chemo or some other aspect of treatment. You can accept to make them feel better. But overall, do everything yourself.
This is an important aspect of how to keep the patient happy. Have only positive type of people meeting the patient. Remove people who make her or him feel low. It is good to let the caretaker read out from special books or listen to music which is soothing. Encourage patient to read books and watch movies which have happy endings.
Be vigilant about not letting any bad news reach the patient if you can help it. No question of watching the news. As a patient, you’ve got to detach yourself from world news for this time, you are already fighting enough of a battle yourself.
Faith is the greatest booster for the patient and the caregiver. Both need to make sure their spirits are high by doing rituals which make them feel great. Saying prayers, (for some meditation helps a lot, ) giving charity really help. Doing small acts of helping others, always makes the person giving it, feel great. So, let help the patient help others too. In my case, my greatest challenge was to continue the food drive with its logistics of finances. It motivated me to stay well, so I could continue it. It feels great to be of use to others, even when you yourself are going through challenging times.
Managing to do it successfully is probably the greatest spiritual boost. In the same way, helping other patients in some way, makes a great morale booster.
Special attention to Diet intake:
Each aspect is so vital, yet diet is one of the most important. Specially when chemo is begun. The taste buds and full digestive system faces a major trauma. The entire inner lining gets affected. Starting with everything tasting obnoxious. Mostly, the mouth becomes raw and full of blisters. Many times my cook would make something really fine, and I’d take one bite and refuse to eat it. I just couldn’t have it.
The caregivers need to understand this, and not feel bad that the patient isn’t eating well.
Here are a few points that may help the caretakers in making sure the patient gets a healthy diet. It is your responsibility to be aware of the food intake:
- Do not give sugar at all. Instead, use stevia, agave and shakkar.
- The craving for sweet foods, can be satisfied by taking fruit, especially dates.
- No chilies in food, this is specially for Eastern homes where all dishes have chilies in them.
- Having soups is great. Broths are even better. Make a healthy broth with beef bones and meat, cooked for around 8 hours, on slow heat. Add vegetables in the end, and liquidize it all after taking out the bones of course. Put seasoning with care. Make it a thick consistency. So, even if the patient has had nothing, you know some good stuff has gone in.
- A large bowl of mixed fruit in daily diet is also a must. However, if the patient cannot take raw fruit, it can be lightly steamed first.
- When hemoglobin or red blood cells are less, give chicken or mutton liver lightly cooked with onions and tomatoes.
- Do give carbohydrates in the form of bread, rice or roties, but in less quantities. You need to know that in the end, all carbohydrates end up as sucrose, which is a form of sugar.
- I lost twelve kg during eight months of treatment. However, I forced myself to eat, knowing that without food I do not stand a chance. This is why as a patient, you have to cooperate too.
- Having citrus fruits, and lemon juice is good. If nothing else, I’ve heard, that if you freeze lemons, then grate them along with skin and sprinkle this over everything you and patient eat, it is one of the best things to do.
- Fish is excellent. Have it any way you can.
- Meats are generally to be avoided, but do take in small portions once or twice a week.
- I’ve taken eggs throughout. I took these on alternate days. Mostly boiled.
- Avoid having milk, but do take lots of yogurt.
- During chemo one is at one’s worst. So, take small meals every two and a half hours.
- Stop taking cooking oils except virgin olive oil. Only use desi ghee or vegetable ghee to cook food in.
Mouth sores during and after chemo:
My daughter Nataliya had done her homework before coming, her friend Saira helped her because she herself was a cancer patient. Also, Nataliya read up on it, and got me things which made it much easier for me. In the same way, you as a caregiver need to find a similar case and find out for yourself in what ways you can give relief to the patient.
- Get very soft furry type tooth brushes for the patient.
- Also mouth washes and mouth sprays to soothe the mouth. Use these often, at least three to four times a day.
- The idea is to take so much care that the mouth sores do not become too bad.
Right from the start of chemo, brush the nails with tea tree oil. It is really good. The nails will still get quite bad, but not as bad as if you didn’t do anything for it. This oil definitely makes a big difference. I’d put breathable nail polish on it, so it wouldn’t look bad.
Make a nightly ritual of putting on this tea tree oil on finger and toe nails every night. If possible do it twice a day. The patient can do it himself or herself too. It is colorless, and makes a big difference.
Yes, the hair will fall off. Stop making a fuss of it. Have a lovely collection of scarves or get nice wigs to cheer yourself up. You’ve got to keep yourself happy, anyhow. If you are the caregiver, then try your best to get the best for the patient. It really does make a big difference to the morale.
The skin may react to certain medications that you are taking. So, be aware and take action. Usually, let it become better on its own by taking lots of water, sleep and exercise, along with using lotions which suit you.
Take extra care of skin, as the whole body is going through a rough patch now.
The doctor doesn’t have time to tell you everything. There is plenty on YouTube and other sources to find out. You will find out most from your own experience, as each case is so different. Remember keeping the morale high is your greatest objective. Rest will all follow.
- Keep a daily diary. Have a section for notes by the caretakers. Another section with charts of morning and evening blood pressure, temperature and heartbeats noted. Another section about what to do next.
- Caretaker needs to be clear and have full knowledge about the trips to hospital, what is done there, how often it is.
- Also to be in contact with oncologist in case of an emergency. Making the decision to take the patient to the hospital. You also need to have a contact with a hospital near the patients’ home. So that small type of help can be taken from there. In case of Shifa International Hospital they do have a home service. Still, I had an alternate arrangement also, for injections and even glucose infusions, when needed in an emergency.
- There are times when the patient is going through brain fog, and he doesn’t know if he needs to go to hospital or not. At such times the caretaker needs to be very alert, to decide when to go to the hospital emergency. For this, the caretaker needs to know the danger signals of BP, Temperatures and heartbeats. Also any other danger signals.
- Keeping all papers of hospital visits, reports and receipts of bills paid, in excellent order. It is better to keep all reports in one folder, all doctors’ reports in another, and the receipts in another. Also, I found that I kept a main folder for all chemo, with folders in it for each chemo. Similarly, another folder for the surgery, and another for radiations. This is important, otherwise, the hospital will happily make you repeat the tests, since it only fills up their accounts! Being organized will help the patient and the patient’s pocket too! Normally, the patient is given an MR No. The caretaker needs to know this. Also the procedure for getting full information of online test results etc.
- Some hospitals and pharmaceutical companies offer special grants, like free medications on alternate chemo. Do find out the details, and get the needful done for it. It makes a big difference.
Quite mind boggling. Right?
This is why if you are the patient. Be patient, but also vigilant. You will be perfectly fine many days. Use those days to manage the paper work. Also, if your caretaker cannot handle it well, do it yourself. Make a system, by telling the caretaker to put all papers in a ‘Current File’, then you can put it in order later on when you are better.
It is a long journey:
It is a long journey. There maybe days and nights of total hopelessness. Stay calm. Try to have some ‘go to’ verses, meditations, programs on YouTube or books like The Comfort Book which my daughter Nataliya got me from USA. Ask your child/caretaker to read it to you. Such times felt great when Waliya would read out to me, and I’d lie still listening to the words, which did give me comfort, and her voice, which gave me more comfort.
Also, make sure the patient goes on many outings, and has other interests. Spending time outdoors on a daily basis is a must.
Oh my God, this post has become sooooo loooooonnnng. I’ve just returned from the hospital after my forth dual targeted therapy. But I had to complete this post which I had started it in hospital while getting the therapy. Next day, I went off on a trip to Lahore, then the day after, to Sahiwal, and Okara. I’m busy with work. Feeling wonderful that I can take it all. Even though I get tired more quickly.
Hope this post will be of use to you, the caregiver. While it is a tough road. Yet, you know, you wouldn’t want to be anywhere else! When a loved one is going through a battle, you want to be right next to him or her. You feel happy and satisfied to be in a position of help and use to your loved one, when they need you the most.
Stay blessed and protected. 😊