I wrote this one a long time ago. (over 2 years!) It might still be useful, so I decided to share. - Jenny
A few people have asked me if I have any tips for how to support their friend/family member who is facing some time in the hospital. This question makes my heart hurt so much :(
I put a little list together that I hope will help. I hope most of you never need to use it!
If you have dealt with a long hospital stay, please feel free to add other ideas in the comments.
1. “Let me know how I can help.” Of course, we SO appreciated all the offers for help. But at times we needed it, it felt overwhelming to ask, or decide where to even start in asking. The best offers tended to be the most specific ones. Like, “I thought I could do [this thing] for you guys. Would that help?”
Suggestions: “I thought I could take your dog for a walk / bring you takeout / mow your yard / clean your kitchen / meet you for a walk / do a load of laundry / take your kids to the playground” (we don’t have kids, but you get the idea).
And then don’t forget the second part, “…would that be helpful?” Because maybe it’s not, and be prepared for them to say “no, but thanks.” Or, “that’s sweet, but actually what I really need is X.” And then there you are, being all helpful and stuff.
2. Your words: Sam touched on this really well in his blog post. But, as we all know, it is hard to tell people how we feel about them. However, don’t underestimate the healing power and encouragement that can come from a short note, text, facebook comment, email, etc. even if it feels so small and helpless. Just telling someone with sincerity that you are thinking about them really, truly means a lot – more than most gifts you can bring and are the things I still think back on now years later. - 1/4/19
3. Gifts. This is vastly different depending on the situation, I’m sure. But if I were to bring a gift to someone staring down a long hospital stay, it would probably be one of these things:
4. The visit. Here’s everything that comes to mind:
6. Be understanding. Sometimes, your hospital-bound person (despite best intentions) won’t have the energy to reply to your message, thank you for your gift, or (in really bad times) even open your gift. Just understand that this has nothing to do with you and what you did, and the effort you showed is noted and appreciated. Things can change quickly and you’ll have to roll with the punches as a supporter, just like they have to as a patient.
The best part? I learned all this from the incredible support YOU all gave. Thank you - we are grateful for you daily. Again, my hope is that you never need to use this list.
I drafted this post from Sam's hospital room in early March, 2017 - right before they decided Sam was ineligible for another transplant and his leukemia was terminal.
Almost two years later, my life is moving forward at what sometimes feels like is breakneck speed. Wonderfully and painfully, Sam remains an integral part of it, but it's changing and evolving. I'm excited about where it's pointing me - a new house (well, it's been a year now), a new partner, and the same job and community I love. It's all good, but I also find myself looking back to that time with Sam I think to make sure I'm applying what I learned. Or maybe because, though it's painful to look back on, it makes me feel close to him.
Anyway, I never published this, I think, because I hated it there but never felt that I should complain - how could I when I at least had my health and some semblance of freedom, when Sam had none. I always felt the need to make everything seem OK when it was just simply hard and kind of dark. I can see myself trying to tie a bow on this post toward the end, and am not surprised it sat in here as a draft - turning out too optimistic and "okay" for how I really felt.
When people approach me now because they're looking for advice to give a friend who's just been diagnosed with cancer, I feel like this stuff should be shared. That it needs to be said that it's OK to say "this sucks" whether you're the caregiver or the patient without adding the positive spin. I feel it needs to be said that, of course, all the hoping and optimism is important, but sometimes getting through each day is all you can muster and that is OK. It doesn't fit with "Carpe the effin diem" but it's honest, and we can always use more of that.
Anyway, for more on real hospital life - a life that still today gives me indescribable gratitude for my house, my dog, a private bathroom, a car, and of course, my healthy body - read on.
Everything on this unit is slightly yellow. The best reason for the yellowness that I can come up with is simply that the former "hospital beige" has been faded by years of the hustle and bustle of medical professionals, caregivers and visitors going back and forth all day after busy, rather intense day. Can just grieving and worrying around something turn it yellow?
Anyway, when Sam was admitted up here over three weeks ago, we thought it would be a couple-day stay to get his GVH flare under control. And then it was a few more days while they made a plan for the leukemia that was surging back. And then we added a six-day treatment regimen onto the plan.... which was delayed by a few days. And then Sam was going to be discharged. Except then he started showing symptoms of infection and then he threw his back out again and needed pain meds and so on, and so on. So now we've been living in the hospital again for another bonus month.
Sam is now on the bone marrow transplant unit at UW, which is not nearly as fancy as the chemo unit where he was treated last fall. The family room is simple - just a table with a few chairs, and a somewhat desolate bookshelf full of dated magazines that have been read at least 6,729 times each. There are two bathrooms for caregivers on this entire floor, and they always smell like, well, bathrooms. (There is something about never using a private bathroom in a day that really gets to me.)
I guess what I'm getting at is just the awareness of living in a very public place not meant for living. Of course my perspective is extremely skewed. Sam has been feeling much better lately, but when he's really sick there are entire stretches that he doesn't even remember. Though a 24-hour day may feel the same, I'm certain that time as a whole is experienced vastly different between the two of us.
Our room is just large enough for a cot, two small rolling end tables, Sam's bed, his IV pole, a sink and his bathroom. There are built-in shelves along the wall facing the bed where the nurses keep their medical equipment, a computer and where the TV hangs on the wall. We've added photos again, and tonight I'll hang some Tibetan prayer flags for color, and to promote peace, compassion, strength, and wisdom.
We have had a lot of guests this stay. Probably because I freaked you all out a few weeks ago and made all Sam's best friends worried that he was dying on us so they booked trips to see him. He's not, but it's still great to have visitors. (A bonus to depressing blog posts, perhaps?!) With each visitor who has come and gone, Sam's ability to be awake and interact grows better and more normal. He opened his computer to plug back into work last week and is taking the constant interruptions for bags of blood, nurse checks, specialist visits, rounds, and all the other things in stride.
So while we've been stuck here longer than we wanted or planned to be, things are going relatively well.