It's been quite a while since I've posted anything to my instagram and my blog. Just a little life update, I had my second beautiful baby, a boy on August 31st! I swore I would get this out before then but pregnancy and having a toddler made it quite difficult. So here I am finally posting it. I would love if other CCLS' could add their own thoughts or interventions in the comments below but I hope you all enjoy my take on bereavement and memory making.
I've done quite a bit of memory making over the years, especially in my role as an oncology child life specialist. In my most recent position it's a lot different since I'm stepping in for the day to provide child life services. It's been a whole new challenge offering bereavement support when I haven't built a rapport with the family. The resources I have at my current job make it relatively easy to provide these services though. My most recent endeavor was with a family whose little one was being pulled off of all life support at 6 months old after almost all organs were failing in her tiny body. The hospital I was at used a product called "sculpey keepsake" that can actually be picked up at your local Michael's store. I used my little ones hand and foot to make our own memories as well as to show you all how beautifully it captures the tiny details of babies hand/foot prints. All the directions are provided on the box so it's easy to follow.
You roll out the clay which the provided roller. *Don't overdo it! I did at first and ended up making it too sticky. I stuck it in the fridge so it would get the tackiness out and that seemed to work for me to finish rolling it out.
Then comes putting her little foot and hand into it. She's pretty wiggly so I was able to get the foot by myself but my husband assisted with her hand. At the hospital I had a nurse help me because the little one I did was alive and under a lot of medication but still alert and looking at me. I was gentle and had the nurse help position her so she was comfortable. I also offered to let mom help and at first she agreed, but things were moving a lot faster than I would have hoped and we had to get it done and mom wasn't ready to go back into the room.
I wrote her name & the date, typically at the hospital we offer to allow families to do this. As one of my coworkers says "I can do it for you, but do you really want to look back and think about that random person writing your babies name or would you rather it mean something by putting your own handwriting in it?" Usually that deters families from having you write it out, but sometimes they're too distraught and may choose to have you do it instead. It comes with a small tool to write with which makes it easy to do. You can also take alphabet beads and place them into the mold if the family doesn't want to write the child's name or have you write it.
Next, we just follow the directions on the box. Bake for 30 minutes on 275 degrees. We have a mobile oven so it's easy for us to do, but if you don't have one at your hospital you could send it home with the family to bake themselves. Not ideal, but sometimes you have to do what you have to do. At the end of the day, it's all about making sure they're given that tangible memory to take home.
We box it up in a simple white box with tissue paper and that allows the families to look when they're ready. Some families may want to see it right away while others may put it away to look at on a special day when they feel ready to do it. We also provide a lock of hair ( we make sure it isn't a patient who has no hair before offering, especially important for an oncology patient), hand/foot prints with ink which we will photocopy and give as many copies as they'd like, books for siblings about death/dying and resource pamphlets for support groups/how to talk to family/funeral arrangements/etc.
Some of the things I've done in the past with my long term patients are canvas'. If you are a primary child life specialist and you know it's an impending death this is easier to do with the families. You can introduce it early on and make it a therapeutic activity. Let the patient choose the colors they want/what they want on the canvas. For example, I had a patient who chose to do a butterfly with her hands and she chose every color she wanted on the canvas. She wrote her name as well. Another option I did was have a tree drawn on the canvas and then either every family members handprints or fingerprints.
Another option I've done with siblings is having the patient make a bracelet for the sibling and the sibling make a bracelet for the patient. Like best friend bracelets, it's something they can bury the patient with (if they choose to) and the sibling has it for the rest of their life. There are a lot of beautiful beads you can buy online like these or these. I just searched "glass beads" on amazon. You can also purchase alphabet beads.
One of my coworkers also loves thumbprint necklaces like these.
Of course, there's also beads of courage for chronic patients. It's a pretty expensive program but it's one that is so therapeutic for parents and teens. Parents of younger children will track their journey and can show it to them one day or keep it as a memory, some younger patients may even get into it as well. Teens can track their own journey which has a lot of meaning to them and gives them something to do. Tiny trophies for all they've gone through. I've also seen other hospitals create their own programs with beads they buy off amazon. The most important thing is to make sure you can dedicate some time to a program like this. I had many parents/patients that I presented this to and I needed to make sure I had time each admission for these. You may only offer it to the patients who are going to be able to track it themselves. Not every patient is a great candidate but I almost always offer it and explain it's their job to make sure they're tracking and I'd be happy to update whenever they're in the hospital. We had an outpatient CCLS who would also update when they went primarily outpatient services. Work together as a team as this program can be time consuming but is very meaningful for many patients and families.
There are so many options of art activities you can do in order to promote memory making without ever even uttering the words “death“ or “dying”. It's so important to start these activities in the very beginning. Either it's something they can use look back on their journey or it's something the family will treasure forever to remember their child/sibling. Although it's a difficult subject to speak about you can easily just go in with the intent of getting to know the patient and doing a "fun art activity". You know it's for memory making but they never have to know that. Drop some ideas below of some fun activities you've done with your patients!