An Open Letter to Siblings, From Caregivers.

• Family history and dynamics can be brutal. We know that, for whatever reason, you weren’t able to care for our parent and we were. We understand that you may also have been too busy/ill/occupied to help us with our parents’ care so we thought it was best to just go ahead and do what was needed. We had some feelings about that, but we’ve come to terms with them. A thank-you is always appreciated.
• Caregiving for a parent is not easy, nor is anyone born knowing how to do it. Our parents were always on our minds, and it seemed like every day there were things that needed to be done. We are not sorry that we made the choices we made – we wanted to be of service to our parent – but we’d like you to know it wasn’t easy.
• We are not professional accountants, attorneys, financial advisors, or nurses; we did the best we could with the information we had. You were always welcome to be involved in our decisions. Showing up now to analyze and judge everything we did, spent, and decided is hurtful to us; we notice that your investigations only seem concerned about the money we spent and not whether we succeeded in keeping our parent healthy, happy, and safe, which we did.
• There is a prevailing societal belief that people should care for family members for free because they are family. We do not subscribe to this. We paid ourselves because caregiving is a job, one that requires a lot of different skills, and a lot of energy. We had to learn on the job, make mistakes, and spend money on classes, books, and DVDs with information on how best to help our parents. We investigated drugs and supplements, researched care options and behavioral approaches, interviewed care providers, and kept track of everything.
• We know you don’t understand why “being on-call” for our parent was such a big part of the job, so we have an example: Remember the night our parent was dying, and the caregiver couldn’t get in touch with you because you didn’t have your phone with you, and eventually had to call your spouse to track you down? We answered our phone on the first ring and were able to get to our parent right away, because we were on-call and always had our phone with us. In fact, we still react automatically whenever the phone rings.
• We observed that you never made time to meet the doctor, or the financial planners, or other care providers, which was a loss for you.
• You may not know this, but we spent a lot of time planning for our parents’ end of life. We toured funeral homes, found the one that suited us best, and informed the caregiver, so that when our parent died, everyone knew who to call and what would happen. We talked to our parents’ doctors so we knew what signs to look for, what forms we needed to sign to make the ending easy for our parent, and how to make our parent as comfortable as possible during that ending. We made sure hospice care was in place, when appropriate. We talked to lawyers so that we knew what the post-death process would look like. And we made arrangements with the financial planners so that there would be money available, and the estate would be easy to close.
• We have observed that the people who step up, do the right thing, and work for others sometimes get screwed, while people who do what they want, seem to get what they want. We know there is unfairness in the world, and we don’t have to like it, and that’s just the way things are.
• We know that grief is a bitch, shame and guilt are insidious, and powerlessness is frustrating. We’ve felt it all, too. We know that these feelings can twist you up, and inside out, and can make you want to do something – anything – rather than feel them. We have seen the bad things that can happen when someone acts from these feelings.
• We are sorry that it is all over and there is no chance to go back and do it differently. There is no more time to spend with our parent. We notice that you are uncomfortable, and it is not our responsibility to fix it. We regret that relationships may now be difficult between us.