Caring for your loved one who has cancer can be hard, there is so much new information to learn and what to expect. Not only do cancer patients get overwhelmed with the diagnosis, so do caregivers. But we don’t often think about the care gives and what they are going through.
Many cancer patients can and do look after themselves and won’t need round the clock care, but for some this care is necessary. This is a short guide for caregivers for patients with a latter stage cancer who require more care.
Your Biopsy is Positive, what’s Next? Guide for Patients
When you here “ We’d like to get a biopsy done because of the suspicious results from your radiology exam” anxiety builds for many people. It’s instant. Other people may not be as worried until things are confirmed either way. But for others, they have immediately imagines themselves in their graves.
To make matters worse, your doctor won’t tell you what he suspects right at this point. It is irresponsible for them to speculate, even if these speculations are based on experience and knowledges. So you are left wondering.
In the ages of Google and WebMD, the first big mistake is searching the internet for a diagnosis. This is where many people immediately convince themselves it is cancer. Everything you try and self diagnose on the internet seems to end up being cancer. After this they will look into the prognosis and the survival rates.
There are things to remember at this stage however;
- You don’t have cancer until the biopsy has confirmed it
- Don’t rely on Google to diagnose yourself. This will cause unnecessary anxiety and scare you
- The survival rates you find on google are probably out of date, especially with the rapid pace at which cancer treatment is improving
- Any questions you have, write them down. Use your phone, or paper. You will forget them when you see your doctor next!
Your Loved One Has a Malignant Tumour, what’s next? Guide for Caregivers
If you have a loved one and their biopsy has come back positive for a malignant tumour, then your world may be spinning out of control. This is normal. But remember to stay calm.
You may not be able to process anything that you doctor is telling you about your loved one. It is important to try and focus. And you may leave the appointment with your loved one knowing less than before with more questions than answers.
Stop! You need to listen for your loved one! Think about how they are feeling at this moment. Are they taking in all the important information the doctor is telling them? You need to listen and ask questions for them, they might be overwhelmed by it all.
Again, just as if it was you being diagnoses write all the questions you have over the next few days. You will forget them when you see the doctor next.
Some information that you’ll need to know as a caregiver;
- What kind of cancer is it
- What stage is it in
- And has it spread anywhere else
- What are the treatment options
- Who are the leading oncologists in the area
- Google can now be helpful as you have a confirmed diagnosis on the disease and stage
- If you are looking for support, join an online community- ihadcancer.com is an example
At this point you may be overwhelmed by all the information that is being thrown your way as a caregiver. It may be helpful to think less long term and just focus on the next appointment or treatment session. By changing your frame of mind in this way you will have many short term goals than on large long term goal.
This make the short term goals more achievable, leading to achieving the long term goal of a cure. So instead of thinking what happens if the first round of chemo/radiotherapy hasn’t improved the prognosis, just focus on completing the first round of treatment sessions.
Get through the first round of treatments! Make a checklist if you need to on your smartphone, or paper, whatever works. This will make you more organised and accomplished tasks. Don’t underestimate the importance of a checklist and ticking things off as you go.
The sense of accomplishment your loved one and you will feel will help maintain your sense of worth and stop the feelings of helplessness and drowning in sorrow from what might come. Don’t think 6 months ahead, think much smaller chunks.
Caregivers Support During Treatment
Cancer treatments using chemotherapy and radiotherapy are commonly delivered over a series of weeks. This treatment period can make you feel like you are stuck in a rut. Numerous appointments, prescriptions, oh and you might have to also look after the rest of the family.
You must take some time for yourself here, otherwise you may suffer caregivers burnout. Go out and have lunch with some friends. You are only as good to your loved one as good as you are to yourself.
It is also important to accept help from others. If family and friends ask to help, let them, take them up on the offer. Some things that friends and family can do to be helpful are;
- Prepare meals that can be frozen. This is great when have lost energy to cook
- Offers to look after your loved one for a few hours when you need to get away
- Offer to help out with house chores such as cleaning, or taking care of the lawns
- Anything else that can help with day to day tasks
During treatment some side effects can occur, and thing from feeling nauseous to hair loss. Your doctor should have explained what to expect from the treatment. One side effect that often takes caregivers by surprise is changes in your loved one’s mental state.
This can be one of the hardest side effects for a caregiver to deal with. Some patients fall into deep depression and shut the world out, others may lash out at everyone around them. Some may suffer from extreme anxiety. You have to try and be patient with them. And mention the changes in their behaviour to you medical team.
Both chemotherapy and radiotherapy take a toll on the human body. So your loved one may not feel like eating. It is important to try and encourage them to eat to keep their weight up. It is nice to prepare their favourite food to encourage them to eat. If they really aren’t eating consider a liquid meal alternative.
There is Nothing Left That We Can Do
This is terrible news to anyone, and can come at anytime after the treatment. If the cancer was caught early enough it is easier to eliminate from the body. This is great news. But be ready for those words from the doctor that the cancer cannot be stopped. If this does happen you have some decisions to make, your goals have changed.
Some patients may want to pass away in their homes, others do not want to burden their family and will want to go to a palliative care centre or hospice. Ask your loved one what they would like.
Check you local health care provider to see if there is the option of a hospice close by. Ask your medical team if they can suggest more advanced care. Be informed about what your options are.
The most important aspect of this period for your loved one is pain management. Gauge if it is increasing and not being manage well. Make the doctors aware of this. Pain medication can have side effects such as constipation, so be sure to manage this as well.
It is hard to see your loved on in so much pain so it is important to keep it under control as much as possible for both you and your loved ones sake. The goal in this stage is to make your loved one feel as comfortable as possible.
At this stage you need to have a difficult take with your loved one, you need to ask them if they want to either be resuscitated and put on life support option, or to have a do not resuscitate restriction. Make sure their personal last will and testament is in order.
This is a very difficult time for anyone.
As the cancer continues to spread, it is normal for them to lose their appetite, and along with this comes weight lose. This is normal, if you can call it that. You have to remember that you cannot force them to eat. As the body begins to shut down it may not be able to process solid foods, and forcing liquid foods can cause distress, diarrhea, and vomiting. Listen to them, and don’t force them.
Remember, it is the last of the time they will have. It is for them, you have to remember this and let go of the hope of saving them by forcing them to eat, or take medicine.
Some people want to see all their friends and family. Other don’t want to see anyone. It is up to them. Friends and family will want to visit often. It is up to you to become their voice in what they want and to explain this to friends and family.
Dealing with Caregiver’s Burnout
Caregiver’s burnout is common at this stage. Most will feel like giving up at some point in the journey. Seeing them go through this takes a real strain on anyone. Remember to take some time for yourself. You will look back at this time and cherish it.
You are the only person who can care for you
It is your role to not only care for them but yourself too. It is a real journey of emotions. It is ok to seek help if you think it is needed.
This guide can hit home for a lot of people. It it a raw guide, but by no means complete. There are many other great guides out there for you to read, and I urge you to read them. Or if you have any other tips, leave a comment below.