My daughter Tiffany asked that I write about my perspective as a caregiver after surgery. I won’t tell you everything that happened throughout my daughter’s three brain surgeries. To do so would be an exceedingly long narrative and panic anyone’s loved one who was considering the procedure. What I will do is give some thoughts and advice.
The first piece of advice would be to make sure they talk to someone who’s been through whatever they’re considering. The surgeons haven’t. No matter how hard they try, or what they’ve seen, it’s not the same thing. Your loved one’s experience may not be the same as someone else’s but I think it helps to know what you’re really in for. There are people who would disagree with this. I understand that perspective…and in some ways agree. But I’ve had a year to think about this. Have them talk to anyone they can find who’s done it. Insist your loved one does this. It will help you both be prepared. By them being prepared it makes your job easier. I wouldn’t say to be a pessimist, but prepare for the worst and if things go better than expected, it’s a gift. If you’re not prepared it’s a nightmare to try to deal with in the middle of catastrophe after catastrophe.
Make sure before surgery you have the numbers of all your loved one’s friends and family. You will be the one giving updates. Also have their living will. Tiffany knew that her motor cortex stimulation surgery was risky and therefore prepared an advanced medial directive, a will, and updated her life insurance and 401K beneficiaries. The living will/advance medical directive can be in a sealed envelope for their privacy. Make sure you know their wishes if things go wrong, or if they’re not comfortable talking about them, that you have them in writing.
If you have to travel for the operation, try to stay in a suites-type place as opposed to a hotel room. When you’re far away from home and stressed out, it helps tremendously to have more than four walls… and be able to just walk into a separate room. A lot of hospitals have places they’re associated with for long-term patients. Ask! Additional note: as soon as you check in, ask the clerk for a list of places that deliver – especially pizza and Chinese (they tend to be willing to deliver later). When you arrive back where you’re staying late, exhausted, and in no mood to deal with a restaurant, this can be a life saver. Also if you were able to get a suites-type place, a few frozen dinners put in the freezer when you first get there can come in really handy.
When you pack, pack comfortably. Really comfortably! Think sweat pants and t-shirts. You may well end up in those clothes for 24+ hours and/or sleeping in them. Always have a sweater or jacket. Hospitals can be cold. Have a bag that lives with you. In it should be a cell phone with the charger (do NOT forget the charger), notepad and multiple pens, toothbrush, toothpaste, change of underwear, reading material, camera if you have one (phone pics are good but camera is better), snacks, sudokus, crosswords, music with headphones, laptop and charger – basically whatever you do to pass time and take your mind off of things. Also have contact numbers (in the notepad) including where you’re staying, hospital, pharmacy (don’t count on the hospital’s – you may need to fill prescriptions at other times), and doctors’ numbers (do NOT count on your loved one’s phone or memory).
Before the surgery make sure you understand the soonest and latest the doctor might be able to talk to you. Make sure you understand when you will be allowed in post-op and what you can expect your loved one to look like and act like. It helps to be mentally prepared. Take pictures throughout the experience! Your loved one may not remember things and unfortunately it is important to document things in case something were to go wrong. If you believe in prayer, say one together. That act can be very comforting… for everyone. Kiss your loved one and tell them you love them. Everyone is stressed and minds are going a million places. Something could be missed until they’ve been wheeled away.
If the surgery is taking longer than expected and you haven’t been given an update, do NOT be afraid to ask the person at the desk or use the phone (sometimes you have to call). You should not pester but you should be given information in a timely manner. You’ve bitten off all ten of your nails and they haven’t thought to update you and all that really happened was they went into surgery late. You’ll have enough stress – no reason to stress needlessly. When the surgeon comes out, get out the notepad. Write down everything. Whether you think you’ll remember or not. Ask for specific instructions. They’ll want to dash. You’re paying their salary. Don’t tie them up needlessly, but make sure your questions are answered. If something doesn’t sound right, ask them again. If it still doesn’t sound right, repeat back to them what you heard and ask if you have it right. Remember, they’re tired too!
After the doctor leaves, this is your time to quickly work the phone. Call everyone on the list and say they made it through surgery and anything else you wish them to know. Remember to thank them for caring! Once you get called back it may be a long time before you get a chance to make phone calls again.
Important note: nurses are your friends!!! Remember, they have the regular care of your loved one. Be nice to them. Help them as much as you can. Good ones are like gold. Watch the nurses. Learn from them. Ask questions about what they’re doing. Hospital staffs are overworked. A lot of your loved one’s comfort will fall on your shoulders. If they need something, it might be a while till a nurse or aide can get to it or do it. If you learn, you don’t have to rely on them.
Coffee is also your friend! If you’re like me and hate coffee, put lots of creamers & sweetener in it (embarrassing how much I put in it, but I could drink it). When the only things keeping you going are adrenaline and coffee, you better like coffee. Or at least be able to drink it. Find the family lounge and you’ll find the coffee. Learn early on what times the cafeteria is open and closed. There is nothing worse than being starving with no food available except out of a vending machine. If your loved one isn’t eating the food on their tray, eat it yourself. Or keep it for when you’re famished at 3am. You’re paying for it!
During the remaining time your loved one is in the hospital, be their advocate. Watch out for them. Speak up if something doesn’t seem right. Ask questions. No need to be nasty. But be firm. If you’re having a problem with your nurse and it’s serious (as opposed to just not a great bedside manner, etc.), speak to whomever their supervisor is (in most cases this will be the charge nurse). When you have a great nurse, tell them… and their superior. If you want to stay in the room, keep out of the nurse’s way and be helpful. If you do this, they’ll usually bend the rules and let you stay. There normally is a sofa or chair fold out for sleeping and they will bring you a pillow and linens if you ask. I lived in the hospitals with Tiffany the entire time she was in the hospitals.
If you have someone who can give you a break who you trust, take a break. This was very hard for me. Tiffany’s situations were very extreme and were filled with life-and-death-type complications. It’s very hard to leave. If there is a “lull,” take a quick break. Go outside and breathe something besides hospital air and see the outside. Sometimes when you feel overwhelmed, even the smallest break can help you recharge. Try to take care of yourself. If you can, take walks in the hallways. Try to eat as healthy as you can and drink lots of water. Throw your multivitamins in your bag. Remember the more run down you get, the greater risk you’ll get sick and won’t be there for your loved one.
There will be some REALLY hard times. It will hurt to see your loved one in pain. Make sure they’re getting the proper drug combinations to help with that. If it’s not working, insist on the doctor writing a script for something different. While they’re doing that, you have to help them get through. Keep a sense of humor. Try to make them smile now and then. Assure them they will get through this. There will be an end. That you will be with them through it.
There were a couple times with Tiffany that I felt I just didn’t have anything more I could think of to say. In each case I found a clergy person. For those that have any faith, the clergy in hospitals are trained to offer encouragement to all. Don’t worry about the specifics of your religious views. That’s not what they’re about. The people that helped us out were amazing! They helped all of us and got us through a couple horrible low points.
Almost all the time I was helpful, supportive, loving, etc. However there was one time when my daughter became totally despondent. I took her face between my hands and went nose to nose with her and gave her a no nonsense talk. It only happened once. But there might come a time that firmness is in order. You know what and when things work best for your loved one. Don’t be afraid just because they’re in this situation not to do that. Sometimes it’s just what someone needs.
If you have other people staying through the surgery but they aren’t able to deal with the medical side of things, give them jobs to help you. Have them do a Starbucks run for “real” coffee, get something other than hospital food, take other friends and family to the hotel, airport, etc. Get a food treat for your loved one if their diet allows (ask: it’s something to encourage them to eat and get excited about). Not everyone can deal with hospitals and some of the really rough stuff that goes with it. But everyone can help. And that leaves you more time to help your loved one.
When you can, sleep!!! Especially at the beginning you might not get a lot of chances. Grab it when you can get it! Lack of sleep makes everything harder to deal with. If your loved one is an adult and not too drugged to make sound decisions, the decisions are theirs. You should help them look at all angles of things: the pros and the cons. But in the end they have to live with their decisions. Tiffany had to make a decision that could have been a life-or-death decision. I was leaned on very heavily by doctors and other family members to try and sway her a certain way. But it wasn’t my decision to make, nor anyone else’s. That’s a very hard thing to remember and to be able to do. Be there for them. Help them brainstorm. Ultimately let them make their choice. If they can’t make the choice (unable for whatever reason) and it falls on your shoulders, please try very hard to think what they would want and from their perspective, not yours.
When you leave the hospital, get very specific directions. They should be written and you should have taken down notes in your notepad for details. Make sure you know what situation needs a call to the surgeon and what needs a return to the hospital. When your loved one is recovering, write down the time and amount of every drug taken. You’d be surprised how easy it is to forget when and what was taken. Continue this until there is a set routine of only a couple drugs or they’re off the drugs. No matter what, keep a log at the beginning. Everyone is too tired and stressed to be counted on to remember.
If your loved one starts to run a low grade temperature, write down time and temp until the fever is gone or it goes high enough you’ve been instructed to call or come in. Again, don’t rely on memory. Was that at 1am or 3am? Was it 100.9 or was it at 101/5 at that time? It’s so easy to get confused. Watch carefully for problems. Follow exact instructions for cleanings, bandage changes, meds, etc. you don’t know the reasoning behind some instructions. If you want to change something, ask!
At first it’s scary to be out of the hospital. You kept thinking you couldn’t wait to be out. Now that you’re out, their care is totally in your hands. No nurses to call on. Hopefully you paid attention in the hospital and took great notes. You can do this! If you have questions, call the doctor’s office for clarification. Better safe than sorry.
As time goes on, encourage your loved one to do as much as they can / the doctor will allow. It will help them get on the road to a full recovery faster. Sometimes there’s a latent “down time.” That’s the time to rent a funny movie, ask a friend to stop by for a visit, etc. As your loved one is home and recovering, start to take more time for yourself. You need some time to yourself and to do something for yourself. Go out for a walk, drive, lunch, etc. while that friend is visiting.
Throughout all of this, try to remember that what they are going through is an incredible ordeal. If they are sometimes difficult, ungrateful, etc., try to think whether you would be the perfect patient if you were in their shoes. Tiffany has now been dealing with TN and its ramifications for years. This wasn’t the life she signed up for. Neither was it the one I signed up for. But it is our lives. For now anyway. I try to encourage her. Whether that encouragement is “things will be better in 45 minutes when medication kicks in”, or “things will be better when you’re out of this flare”, or “things will be better when there are medical advancements”, I try to offer encouragement when she needs it.
When she has new doctors, new alternatives she’s trying, etc., I let her know I’m interested and want to hear about it. Sometimes for people who have been “sick” for a long time, people don’t want to hear about any of their medical issues. I let her know she can talk to me about them. However, I also let her know she is not defined by her medical issues. She may be a TN patient. But she’s also a smart, beautiful, talented woman. TN has robbed her of some things in life. But it hasn’t robbed her of who she is at her core. I let her know she can call me at any hour of the day or night.
Most importantly, I let her know I love her.
— Holly Martin