What Can I Do to Help?
People might ask, "How can I help?" And it's often hard to know what anyone can do. Cleaning the house, driving you to an appointment, collecting groceries, booking a trip to the cinema... Being specific about how people can help shows them what you're open to.
Another way they can help is to offer you ideas! Ask them to tell you what they can do and see if it feels helpful. It's sometimes awkward to accept help and it's also often wonderful how generously people give.
Below is a list of practical ways that other people can show up for you and your family.
Prepare for Emergencies
Things can go wrong quickly; taking action now gives peace of mind. Get a lasting power of attorney (LPA) registered. Pack it in a hospital bag with key information you might need, like drug regimes. Give house keys to people who can help. Update emergency contacts at school, buy spare pet food. What else might you need for a stay in A&E?
Make Meals
Food is healing, comforting, and very practical. Ask friends or neighbours to cook a meal. Organise a list of volunteers, ask them for a regular meal each week or something which can be frozen. Write a list of ingredients they can use and the meals your family enjoys, so you can share it widely with helpers. (And know that it'll be eaten!)
Communicate
Updating everyone and constantly communicating can become exhausting. Instead you or your partner can set up a WhatsApp broadcast list, so people you're close to can receive message updates and reply privately. Or you could choose a friend / family member to share important news with those who need to know what's going on.
Plan Digital Security
If things go wrong quickly, you may need email access, mobile log-on or bank account authority, without time to prepare. In this situation, passwords, face ID and fingerprints can make things very complex. Update access information so it's secure, offline. Ask someone who understands technology to help you plan downloads now.
Review Decisions
Clinical appointments can be overwhelming. Write your questions in advance to prioritise them. Who do you know who thinks clearly? Ask them to help you prepare. Take notes in the meeting to remember key words and facts. If you don't understand something, ask. Recruit helpful friends you trust e.g. doctors, to review it all.
Do the Research
Medical progress can be rapid and significant. Ask your medical team to identify the thought leaders in your field. Other people can attend conferences or join online groups to find clinical trials or research which may be relevant to you. Psychological and social research may also be relevant. Find support for specific illnesses here.
Keep Records
Unfortunately, things don't always go to plan. Keeping a record of medical notes, hospital visits, prescriptions, etc. means you can easily refer to them if questions arise along the way. Contact PALS if you think the NHS should be supporting you more. Your GP can also offer a range of services and refer you for support.
Be an Advocate
There are times when it's hard for a patient to advocate for themselves, while in pain or feeling unwell. You can support their knowledge by doing the research, finding hope, or giving confidence in decision-making. To do that, you need time and to care for yourself. Ask others to support you, so you can support your partner.
What If Help Is Unwanted?
You can't force someone to be helped. If the person you love doesn't want to talk or won't do the thing which might be good for them, as an adult they have the right to make that choice. Enabling the independence and autonomy of a terminally ill person can be a crucial way to support them.
If their behaviour is harmful to themselves or others, a doctor or GP may be able to advise you in general terms, but they won't be able to discuss any patient specifics with you. If you're worried about yourself call the Samaritans or text SHOUT (below).
Autonomy is crucial for everyone who's experiencing stress, fear and vulnerability. It's OK to say to people that you want to talk about the things you're going through or ask to be distracted from them. It's a specific way that you can ask for help from friends. People often need time to adjust to their situation and compassionate support to approach that help may be what they need. Otherwise it's normal to defend against help or not want to feel helpless.
Being silent, kind and patient is sometimes the only help that's needed.
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