Advice to friends and family of someone with IPF
If your partner or spouse has been diagnosed with IPF, you may increasingly find yourself taking on the role of their primary caregiver. This may be something you were not prepared for or expecting, and it can impact both your physical and emotional relationship. But don't worry, you are not alone. As their caregiver, it's important to recognise that you also have needs, and to make sure that you take good care of yourself. To help you with this, here are some suggestions:
Understand IPF, for your benefit and theirs
Stay Informed. Understanding what to expect from IPF and finding out as much as you can about the available treatment options will help you to ask the right questions if you accompany a loved one to see their doctor. This is always advisable, as you are an important part of the team and you can help make sure the person you care for gets the right treatment at the right time.
A little knowledge will also help you to prepare properly for the future and can reduce some of the worry and anxiety around what may lie ahead.
Create your own support network
Stay Connected. It is vital to stay connected to your friends and family. Illness, and caring for somebody who is unwell, can be very isolating. It is important that you build a robust support network. Friends and family can provide much needed moral support, and a visit will often deliver a valuable psychological boost. They can also give you a break, letting you go out for a coffee, go and see a movie or just have a little personal time to yourself.
Find People Like You. Look online to find other caregivers to connect with. Sometimes your doctor or nurse can help with this by putting you in touch with local caregiver groups. Here you can access both practical and emotional support from people in the same position as you. Ideally, you'll find people who are caring for somebody with IPF, allowing you to share specific concerns and advice. But even if that is not possible, people caring for those with chronic illness have a lot in common and it can be a tremendous help to simply talk to another person going through the same experience.
Sometimes it is not possible to connect in person. This is where social media can play a role, even if you have never tried it before. This might not only be important for you but can also be very helpful for the person you are caring for. The FightlPF facebook channel is a good example of somewhere you can connect with other caregivers.
Keep Talking. Within your relationship, historic roles may have significantly changed for both you and the person you are caring for. It may feel challenging at times and you may feel overwhelmed, but this is normal. If you are struggling, try to talk to a family member or friend, or reach out to your nurse or doctor.
It is also very important to keep talking to the person you are caring for. In relationships, we often try to protect each other. But this doesn't mean you have to stay silent. Be honest about how you are feeling; if you're struggling, discuss this and find ways where you can better help and support each other.
Look after yourself so you can look after them
Eat Well. Caring for somebody can sometimes make you feel anxious and worried, and this can affect your appetite. You must ensure you keep your energy levels up and don't skip meals. Comfort eating, with high-calorie sugar-laden snacks, is a tempting short-term fix but ideally you should try and maintain a routine of regular well-balanced meals with plenty of fresh vegetables and fruit.
Rest When You Can. People with IPF often tire easily and may nap during the day. You can use this time to take care of chores around the house, but it can also be an opportunity for you to rest too. So, if you're tired, have a nap. And don't feel guilty; you're working hard and it is essential you are well rested if you want to stay healthy.
Sleep Well. It is also common for people with IPF to struggle to sleep through the whole night and this can really disturb your own sleep. Earplugs may be helpful but if you are often disturbed, consider sleeping in a separate room for one or two nights a week. This does not need to impact the closeness of your relationship; discuss the reasons for your decision with the person you're caring for to help them understand.
If you find yourself particularly anxious or worried at night, talk to your clinical nurse specialist, doctor or caregiver support network - there are many practical ways they might be able to help.
Stay Physically Fit. Taking regular exercise such as walking in the fresh air can be invigorating, and help you find a little time for yourself. Gentle exercise can also be beneficial to people with IPF so, if they can manage it, helping them take short walks can be very positive. It is important to make sure you remain as fit as possible as well when you are looking after somebody else.
Stay Mentally Fit. Reading, or listening to audio books is a great way of keeping your mind active, and of making a little time just for you. If it helps, set a target of reading a set number of pages a day. You can also read aloud to the person you are caring for, which can be a rewarding experience for both of you.
Simple mindfulness exercises or learning how to meditate are also great ways to help maintain your mental health if you can fit these in throughout your day. These can also be helpful for the person you are caring for and might be something you enjoy doing together. There is lots of mindfulness information available online to help you find out more.
Treat Yourself. Looking after somebody can be very wearing, and we all need a treat once in a while. Make sure that you don't neglect your own happiness. Little treats like a new book, a trip to the cinema/theatre or a relaxing bath can have a huge impact on how you feel. And if you do treat yourself, don't feel guilty - you've earned it, and you deserve it.
Treat Them. Few things make us happier than making people we care for happy. Whilst it is important to try and continue to live as normal a life as possible, try once in a while to do something special for the person you are caring for. Something completely unrelated to their daily needs. It doesn't have to be much, but it is likely to make a big difference to how you both feel and reaffirm your relationship with each other.
Preparing for the future
Handling Oxygen. Most people with IPF will eventually require oxygen therapy, and their dependence is likely to increase with time. So it is very important that you learn as much as you can about how to handle their oxygen and their oxygen tanks. Make sure you speak to your clinical nurse specialist or doctor for advice.
By searching the internet, you will also find patients and caregivers sharing their experiences with oxygen therapy. Even if these experiences are not specific to IPF, there are many useful hints and tips available, from how to travel with oxygen (some airlines have special policies and offer specialist support with the necessary documentation etc.) to routine, everyday considerations such as managing oxygen around the house, making sure oxygen is used and stored safely and when oxygen should be used.
Legal & Financial. Unfortunately, IPF is an irreversible and progressive condition which can progress in an unpredictable manner. It is highly advisable that your legal and financial arrangements are in place. Make sure both you and the person you are caring for have an up-to-date will. Speak to your lawyer about this, and about estate planning. You may also want to better understand what taking 'power of attorney' might mean.