Having Multiple Myeloma usually means letting your family know. Different families have different dynamics; when the patient has children, sometimes they’re grown and off on their own paths in other states or even other countries. In my case, I sent an email to my kids that explained the diagnosis but little more. I gave them a number of links to websites that explained the cancer in ways I thought were well written and didn’t speculate very much. I knew that my mail would prompt phone calls, and that’s exactly what happened. Each of them checked in to ask questions, and being adults, I told them what I could, including the prognosis. Later on, I would tell them about insurance and other legacy information so they would know it existed, and in what time frame they would have to take action to gather what I’d left for them. Many people think that insurance companies, expecially those offered or subsidized by the government will send out notifications of some kind, or the actual benefit. This isn’t true; these things must be claimed, and many must be claimed within certain time limits. Some as short as 90 days. It doesn’t do much good to make legacy arrangements, paying their premiums, only to leave them uncollected. While death is an emotional issue, it’s just an aspect of business to the agency and companies dealing in legacy products.
Different family dynamics means that sometimes the family is in the midst of what’s happening and some are remote and somewhat isolated from day to day happenings. It took me a few weeks before I let my kids in on the situation. My grandchildren were a different story. They lived with their parents in the home of their great grandmother. Their mom is my wife’s daughter, who lived with great grandma to help care for her. She was in her eighties and had suffered strokes and heart attacks, and also suffered dementia. So she needed live in help. When I began chemotherapy and it took a debilitating toll, my wife and I took up residence in the same house. It made caring for the two of us an easier thing, having both of us in the same place. That put four generations of family into a single household, which was …let’s say “interesting.” In this case, three of the four generations had people who felt they were in charge, and in their own rights they were. But we all adjusted because that’s whaty people do.
When it came to the grandkids, we started out by simply telling them I was sick. This was something even very young kids can understand. They understand the concept of staying in bed, or at least taking it easy. We didn’t mention the possibility of death, either for me or for great grandma. But along the way, they experienced one of the family cats take sick, and sadly, perish. When time claimed great grandma, they asked if she’d gone where the kitty went, and they were told yes, that’s where great grandma was, and like the kitty wouldn’t be able to come back. In spite of being at an age in which death is confusing at its least, they do grasp it and the ramifications. Some few days after the passing of my mother in law, I was asked if I was going to go be with the kitty and great grandma. I told them that yes, at some point I would, but it wouldn’t be tomorrow or any time soon. This satisfied the kids, they haven’t brought it up since. But as other people known to the family have passed away, the kids understand that they too have gone to live with the kitty.
Without being aware of it, we can make things greater than they are to children. I spent a long while as a Guardian ad Litem, working with the Superior Court. It was my job to advocate for children in homes where abuse or neglect was present. I learned that the way that the issues these children faced was addressed could be a lot more traumatic and damaging to the children that the acts the caused the state to intercede. I found that if I didn’t make a big deal of whatever it was that happened, and didn’t interrogate the children, that they would end up telling me their version of events as their trust for me built. State caseworkers, while well intended, often made the job more difficult because they were overloaded and needed to get information from the children in little time, to meet their schedule and reporting requirements. Often the children would amplify the events because of the attention they would get as these workers fawned over them and told them how awful what they’d experienced was. Kids are attitude sponges, and in their own ways tend to inflate things. A psychologist once told me that issues of family were very fine things, with the tiniest of issues all combined into a larger dynamic. That children would take these tiny things and make them much larger –ostensibly so they could see and handle them better. I grew to see the wisdom of that statement, and discovered it to be profound.
If we reveal bad news to children in ways that we attach heaviness to, the children pick up on that and amplify it for themselves. So the less emotional and more matter-of-fact we are about the sad things we need to tell our kids, the better it is for them. My junior family members have their own ideas of death; it is a happy place in their eyes. They picture it in a kind of Disney-esque view. That doesn’t make it a desirable place, because they miss those who go there, sometimes deeply. But the way it has worked itself out, I feel good that they will be sad but okay with it when the time comes for me to go live with kitty.