If you and/or your loved one have just received a cancer diagnosis, it's coming.
If you are further along in your journey, your fight, you have already heard this expression numerous times.
Many friends, co-workers, distant family members, heck even strangers, will tell you "Please, let me know of anything I can do to help."
If you are fortunate enough to have a large support network, the offers to help from concerned friends and family is of course a wonderful thing.
But what we learned along the way is there is a very big (and subtle) difference between a friend saying "Please let me know of anything I can do to help" and saying, "I know you must have a ton on your plate and on your to-do list, please give me one thing you think I can do and will be good at."
So let us explain.
First of all, what do we mean by caregiver? We @CQ define caregivers as friends, family, or persons involved in any aspect of the patients cancer battle. Some family members will be forced to become caregivers, some friends may be asked to become caregivers - it can really vary.
You might not even know you are about to become a caregiver. It can be blindsiding and thrust upon you when you least expect it.
Second of all, it can all be very overwhelming. The outpouring of support can be a lot to handle not only for the patient, but for the family, for the caregivers, for all involved.
Many friends, family members, co-workers, will tell you "Please let me know anything I can do to help."
While that is very nice of them, it puts the caregiver in a tough position for a few reasons:
It makes the assumption that the caregiver/family knows what to do. But the caregiver/family might not know what to do just yet. When our mom was diagnosed, none of us were familiar with pancreatic cancer - at all.
Next, communication and coordination takes time. It takes time to reach back out to everyone, to respond to the emails, phone calls, text messages with specific instructions per person.
It also puts the family in a tough position that they have to constantly be telling other people what to do. This can be difficult. We are not suggesting you just do whatever you feel like and run the risk of bombarding the family, but take a few seconds to think about what they might need if you are about to offer help. Do your homework. Think to yourself, what is most needed? What am I good at? What service can I provide?
A caregiver's focus should be spent elsewhere, not on telling everyone what to do, so it is important to get yourself, your immediate family, patient and caregivers organized. Sit down together, craft a plan, and understand what you will need and who can fill those needs.
Here is a brief list of things that will help you get your team organized.
1) Find out who is on your team. Family, friends, neighbors, even strangers. Any who has had experience with cancer can be an important resource.
2) Assign roles. Do you have a friend in the medical field who can help with research? Do you have family members that are amazing cooks? Assign roles and write them down. Tell the person that is going to be their role and that will be the best way for them to help.
3) Set up a conference call amongst concerned family and friends. Let them know your game plan, how you plan to approach the diagnosis and what your treatment options are (if you know them already). Let them know you will be assigning roles and setting expectations. Some people want to help, just need a little guidance as to what is needed.
4) Set up a blog. We will have more on this soon, but it is easy to set up a blog using Wordpress or Tumblr. Have one or two people responsible for managing the blog. This way, you can post updates to the blog and send around the link to the support network so they know what is going on and can hopefully ask more informed questions. It also helps mitigate all the constant texts, emails, and phone calls from your network of friends and family - as many will be able to receive their updates directly from the blog.
5) Make your own list & delegate. As a caregiver, think about what research needs to be done? What meals does the patient like? Who can help with the blog? Who can take the patient to appointments / treatments? Once you have your list of what needs to be done, think about everyone's roles, and assign accordingly. Start to delegate.
This perspective is important for friends/family who are asking what they can do to help. We will have additional posts from a supporter's perspective soon.
As a family member, caregiver, many concerned individuals may be reaching out to you. Have a plan, and be prepared. Understand that outreach from others is rooted in the desire to help but that people might need a little guidance, pushing, or direction. If you are organized and ready for that, it will hopefully make it a bit easier for all involved.
The reality is that some people will rise to the occasion and others might be a bit disappointing. But, as a caregiver, by being organized, forcing yourself to delegate where appropriate, and being prepared for this, you can be proactive, resourceful, and start to do all the things that your loved one needs in their fight with cancer.
Too long ; didn't read (TL;DR)
As a Caregiver, think to yourself, what is most needed? What are the strengths of friends and family? What services can they provide? A caregiver's focus should be spent on the most important items, most needed tasks, not on telling everyone what to do.
It is important to get yourself, your immediate family, patient and caregivers organized.