It's been one heck of a year. Along the way, I have learned a few things; things I did not know before because I had no reason to have known them. These are practical suggestions because I am a practical person. I have read one too many articles about caregiving that say things like, "Make time for yourself,""Stay active," blah, blah, blah. How in the heck do you do that?
Without further ado, I hereby bestow my wisdom.
1. Whenever you have reason to accompany someone, anyone, to the hospital or a doctor's appointment, carry a notebook/paper and (working) writing implement. Taking notes on your hand that you, hours later, try to decipher so that you may report to the rest of your family the prognosis for mom or dad only causes frustration. Trust me, I learned this from experience. Plus, it takes a while for the ink to wear off and people tend to look askance at adult women with sharpie script on the back of their hands and extending up the forearm. Not that I care.
2. Never leave home without an a/c charger for your iPhone. I love Siri, but girlfriend sucks the life right out of my battery. It's very stressful to be delayed and want to call home to talk your children through dinner prep and homework when your cell phone battery life indicator is in the red zone.
3. Keep snacks and water bottles in your car or your purse. Hospital cafeterias close at the most inconvenient times. Emergency rooms are often located in dicey areas where you don't really want to get out at the local Circle K at 2:00 a.m. to buy stale trail mix to tide you over on the drive home.
4. Be nice to nurses. Let me repeat: BE NICE TO NURSES. Even the surly ones. Not only are they they the folks administering the "hands-on" care to your loved one, where a gentler touch brought on by fondness is desired, they know where the coffee machines and free snacks are located and will share this information with you if you are nice. Yes, there are nurses in my family so I am biased. However, I have seen what good nurses can do. They can figure out that prescribed medication was not actually ordered from the pharmacy (yes, this happened) and get it ordered. They notice when symptoms are worsening or not improving as they should, and take action - right away- which saves lives. They are the implementers and gatekeepers for the doctors, so when they see something in the chart that the doc may have missed or an error the doc may have made, they will call it to the doctor's attention. They are better educators than most doctors, and will explain things to you so that you understand what is going on and what is likely to happen next. There is a lot they can do to make you and your "patient" more comfortable and at ease. Be nice to the nurses.
5. Be up front with your kids. Give them the truth: "I probably won't be home for dinner, so let's talk about what you can eat if I'm not here." "I really want to go on your field trip, but this time I can't do it." "Grandma is very sick, but it still makes her happy to hear your voice. Would you like to talk to her?" "No, Grandpa is not going to get better, so let's visit him as much as we can and let him know we love him." Nobody likes to deliver bad news, but it often saves tears later. Kids are smart and they know when they aren't getting the whole story. Give them the respect they deserve.
6. Keep an updated calendar and contact list on your person. If plans have to be cancelled or changed you can deal with it right away. Make sure you have numbers for all of the schools and neighbors.
7. Keep a photocopy of health insurance cards, Medicare cards and photo identification, along with medication lists for whomever you care-take, in your purse. I needed these documents often since we utilized several different hospital systems.
If it is not you, but a friend, who is being "sandwiched" between parents and children or is otherwise in a medically stressful situation, here are some things I know, now that I have lived through this. I beg forgiveness from all of my friends for not doing these things before. I'll do them now, pinkie-swear!
1. Call her (or him). Listen and let her rant. Don't worry about bothering her. It really helps to know that friends are thinking about you. Or send a quick email, letting her know you are thinking of her. Spending long hours in hospitals and emergency rooms leaves a person feeling very disconnected. Those places are like casinos, with no sense of time or place, so it's nice to have little reminders that you haven't stepped into the Twilight Zone and that life "on the outside" is still going on and that you haven't been forgotten.
2. Cut her some slack - a lot of it. If your friend is in this above-mentioned challenging situation, do not be offended if your calls and emails are not returned. Do not begin conversations or emails with, "I haven't heard from you......". She does not need the added guilt; she has plenty of it already. She got your message; she saw that you called; she appreciated it. Trust me, she was just too wiped out to respond. That or her cell phone battery was dead.
3. Do something with/for her kids. Pick them up, take them to your house to play with your kids. Take them anywhere, just give them some attention. They need it and your friend will be relieved of some of her guilt. She might even have an hour to blow off some steam browsing Pinterest. One of the nicest things anyone has done for me was to take my girls out to dinner during the calling hours at the funeral home. I had completely forgotten about dinner that night. She saved the day.
4. Bring food. Anything. A bag of bagels and some cream cheese. Dinner. A fruitcake. (Well, maybe not). It doesn't have to be fancy or gourmet. Take out and pizza get expensive and tiresome. Exhaustion and worry make planning meals and shopping really daunting. It is such a relief when someone calls and says - "I'm bringing you dinner tomorrow. Any allergies? When can I stop by or where can I leave it if you are not home?" This is also true when someone has a death in the family. BRING FOOD.
5. DO NOT SAY, "LET ME KNOW WHAT I CAN DO." I've said this in the past and I will never say it again. It is perfectly useless because it puts the burden on the stressed out person to come up with something, but she doesn't want to suggest something too burdensome, so she will say, "Oh, I'm fine. Really." Even though she's not. If she's feeling kind of pissy and if you are a close friend, she will think, "Thanks for nothing." And she will be annoyed with you. Instead, offer a couple of things you would/could do and ask her which would help her the most. Or just cut to the chase and bring food. If you are yourself in such a stressful situation that you simply can't do anything for your friend, don't tell her that; she'll feel like she should do something for you. Just call and tell her you are thinking of her or better yet, send a card.