Inside the Secret Society

For the past two and a half years Ive been a member of a secret society. We are all around you, hiding in plain sight. It is a secret society of benevolent people, carrying out not-so-secret missions in broad daylight. Sometimes youll see the fruits of our labors, but most of our work goes unnoticed and, therefore, is often unappreciated.

We are the caregivers. We are the people who take care of others. There are a lot of us out there, and you probably know one or more of our members. We are the people who take care of sick and aging loved ones. It is a labor of love that is both incredibly fulfilling while simultaneously being the hardest thing weve ever done. Now that I am no longer a member of this secret society of caregivers, Ive decided to break the unwritten rule that most of us live by: dont talk about it.

Every caregiving situation is different and every caregiving situation is the same. A loved one needs help, but not enough help to warrant a nursing home or skilled nursing facility. Oftentimes the person being cared for makes it crystal clear that they do not want these options. The caregivers role is to make this work, to do the things necessary to keep their loved one as healthy and happy as possible in their home.

Making it work is a lot of work. There may be dietary restrictions, medications to manage and administer, appointments that cannot be missed. Help will be needed with personal care and grooming. Everything has to be planned and scheduled because the reality is that you are responsible for the life of another person, a person that you love.

Thats why we dont talk about it. Being everything for one person is a lot of responsibility, and this responsibility cultivates a great deal of intimacy. Suddenly there are secrets because talking about daily life feels like a betrayal of trust that risks robbing your loved one of the dignity and self-respect that they need now more than ever before. Yes, I will quietly tell the medical providers in detail what is happening; no, I will not share this information with casual acquaintances.

We dont talk about what the experience is like for us because it is often overwhelming and ever-changing. We see and feel our own lives becoming smaller despite being busier than ever before. We love the work and we also feel guilty for wanting a break. We are worried and we are scared almost all the time because we know how this will end.

We need help in order to continue helping others, and thats why Ive decided to write about this. Simple things can make a big difference for everyone involved, so here are a few tips for ways you can provide real, meaningful help.

If you want to help, offer specific things. This shows that you mean to follow through, and it saves us from feeling like were imposing by asking for help preparing meals, doing laundry, or taking care of errands. Offering specific things separates you from the well-meaning people offering thoughts and prayers.

Spend time with us. Everyone involved needs a visitor from time to time and your company helps us feel connected to the rest of the world and know were not alone.

Be supportive in the right ways. There are often a number of complicated feelings in these situations and we need to feel safe to share them. Its good to be positive, but its also important to recognize and empathize with the realities of the situation. Being overly positive tends to dismiss what were going through and that makes us feel worse. Its better to acknowledge the challenges than to gloss over them.

Be there for us when its over. Losing a loved one is never easy, and its even harder when youve invested every part of yourself in caring for them. Grieving is a process that takes time and is different for everyone. Understand that this kind of loss is unique and that we now need the love we have so freely given to another.