Getting a big diagnosis can change not only the patient’s life but the entire family’s life drastically. I have been on both sides of the coin- I have been the doctor delivering bad news to a family informing them that their loved one has an incurable disease, and there’s not much that can be done for them, but I have also been a caregiver sitting in a doctor’s office receiving the news. Neither of these experiences is easy to handle.
Nothing in life prepares one to be a caregiver of a terminally ill patient. Most often than not, the news of the sickness comes as a surprise. Terminal illnesses put a strain on the family emotionally, financially and socially. Knowing how to handle these moments can relieve the strain and the pressure a great deal.
This is a journey that is unique for each individual. Patients and their caregivers experience diseases differently, and even two patients with the same diagnosis may have an entirely different journey. No one and nothing can adequately prepare you to handle such moments. There is no manual for this; we just all have to take a day at a time.
Some might get into depression; others blame themselves, their decisions or their loved ones for putting them in that situation. The experience is unique for each patient.
When a patient or a loved one is diagnosed with a terminal illness, it changes a lot of things. It shakes up their world. Some patients need help to digest, understand & accept the diagnosis. Some might get into depression; others blame themselves, their decisions or their loved ones for putting them in that situation. The experience is unique for each patient. Whichever way, at this point, the patient is blessed to have you taking care of them.
“There is nothing much we can do for them; We have done everything we could; All we can do now is make them comfortable; We are sorry; they only have a few weeks or months left to live.” These are some of the hardest conversations to have with any patient or family member. So what do you after hearing statements like these from the doctors?
Here are a few tips;
1. Be Present
The delivery of such news is the beginning of a journey; one that no one can take alone. Remind yourself that your presence is the greatest gift you can give to your loved one at that particular moment. Sometimes the bravest thing you can do is just to show up. Show up for them emotionally, spiritually, physically, financially to the best of your ability. They may need you to sit with them until they can digest the news they have just received. They may get into denial or even chose to reject any form of treatment offered. At this point you maybe as confused as they are, but do not leave or disconnect. They may not say it or act like it but trust me they need you more than they are willing to admit. You may not promise them good health or recovery, but you can promise that you will be there for them through it all.
2. Be a Hope Dealer
I have broken news to many patients and families, and I have made an interesting observation. Patients tend to watch out for the reaction of their caregiver to the news of their illness. Most times that reaction sets the pace for how they perceive their illness and fate. It helps to have a hopeful person in the room during such moments. Doctors tend to be blunt while giving the diagnosis because they don’t want to give false hopes or make empty promises. Your presence in that room is not to reinforce the prognosis and show them how bad the situation is. Your presence should be the only light that shines in a room full of darkness, however dim the light may seem. When everyone is giving up, you should be the last one to give up. When everybody writes your loved one off, don’t do that. Do not dig their grave while they are still alive. I believe that there is always hope. As long as there is a God in heaven, there will always be hope. There is no situation that is too far gone for God. Even when there is absolutely nothing that any human being can do for them, remember that nothing is impossible with God. Pray with and for them as much as you can.
3. Remain Positive
Be positive while talking to them or around them. Do not lie to them but keep the statistics away from them. Constantly reminding them of their prognosis and mortality rates will not help them in any way. Speak life to them. You can share success stories and survival reports. It gives them comfort when the caregiver is full of hope. Whether they get healed or not, being surrounded by hopeful people is good for them.
Acquaint yourself with the medical condition they are ailing from. Know what drugs they are taking and how often they require a refill.
4. Take Charge
Most of these patients have a lot of drugs prescribed to them. Some cannot feed by themselves. Others need help getting to the hospital for their medications. Extreme cases have to be watched all the time. Some may not be very sick and may not even ask for help. No one likes to feel like they are a burden, even when they really require help. Taking off some of this weight from them can be of great help.
If you are in a position to do so, take charge especially of their meals and medication. Acquaint yourself with the medical condition they are ailing from. Know what drugs they are taking and how often they require a refill. Ask questions when you take them to the doctor. Seek clarification when it’s not clear what’s happening. You can read about the complications and prognosis of that disease. This helps you to be vigilant, know what to anticipate and when to seek immediate medical attention.
There are certain difficult decisions that may need to be made along the way. Discuss these decisions with the doctor and make sure you are fully aware of the consequences of making each decision. Gaining understanding of the repercussions of the decisions made can help prepare you and the patient to cope with whatever comes next.
5. Don’t be Afraid to Ask for Help
Never be afraid to ask for help when taking care of a loved one who is really sick. It can be overwhelming, and you need all the help you can get. Ask other family members to step in and help. You can assign roles so that you also get time to re-energize.
If you are having trouble with the medical bills, don’t be shy. Ask friends to help. Do not suffer in silence, that doesn’t help you or the patient.
At some point you may need to hire a home care nurse or nurse aid to help. It is important to understand your limits as a caregiver.
If you are struggling to cope with the situation, feel free to reach out. You can talk to your spiritual leader or a counsellor. You are the patient’s support system, but you also need all the support you can get. Nobody should have to deal with this alone.
6. Take care of yourself
Most people forget about themselves when they are dealing with a sick family member. It is important that you take care of yourself first. Watch your diet, mental health, spiritual growth etc. Do not neglect yourself. This is what makes most patients feel like they are a burden, when they see their loved ones so miserable because they have to take care of them.
If you can’t take care of yourself, you can’t take care of them
Once in a while take a break, take a walk, call a friend, watch a film, read a book, have some fun. If your loved one is not so sick, you can look for fun activities that will involve them too. Don’t forget to smile while around them. Share good memories with them. Engage in activities that are refreshing for you and them. Do not forget to live.
Do your best to avoid arguing with them. Be the sober one and take care of them.
7. Create a Calm and Peaceful Internal Environment for Them
This is not the time to bring up fights and arguments. It is not the time to settle scores. It is time to show them unconditional love. Create an environment around them that promotes healing. Avoid negative talk around them. Do not watch movies or news that might trigger negative emotions. Find things that inspire them. Tell them why you love them. Speak life. Remind them that they matter. Buy them gifts. Include them in your life; share good news with them and ask for advice. Encourage them to dress up when they can. Show them that you are not embarrassed of them. Show them that you are grateful that they are still alive and that you value them.
Handling terminally ill patients is very hard. Some patients get aggressive. Some refuse treatment. Others have no will to live. The pain can drive them crazy. Do your best to avoid arguing with them. Be the sober one and take care of them. This is also the time to show them how much Jesus loves them.
Thank you reading and if you are dealing with a loved one who is sick, I want you to know that you are not alone. God’s got you. Don’t stop believing. Hang in there. If you are struggling in any way, you can reach out to us, and we will help you in any way that we can.
