Grin {and Bear It}: Keeping Me ALIVE

There is no way on earth I could have gotten through my first week and a half without the love and support of my Mom and Jay. That time period is a bit foggy for me, so I thought it would be good to have my Mom write a little (well, a lot) about her experience and give tips to help other caretakers.

A NOTE from my SUPER-MOM

It was a privilege to be able to come alongside my son-in-law, Jay, to help care for my daughter, Christine, during this critically important time. Although Christine is exceedingly competent and independent in her everyday life, I quickly realized how much she dearly needed our devoted care and vigilance in the days following surgery.

Christine was extremely organized and well prepared prior to surgery, and had anticipated and obtained all the supplies we would need to care for her post-surgery (prescriptions, medical and personal care items, drinks, and nutritional supplements). This was a great help to Jay and me, as everything we needed was already at hand! In caring for Christine post-surgery, Jay and I were continually amazed at how very busy we both were in keeping up with her schedule for medications, fluid and nutritional intake, doctor and physical therapy appointments, ambulation, various outings, rest, and in just being at her side spending time with her to encourage her as the hours passed. Jay and I found that staying very organized and, to the best of our ability, anticipating and preparing for everything that needed to be done, was very helpful.

On a personal note, as we all know, it is very difficult to see a loved one go through pain and suffering. It would have been easy at times to be “soft” in our care and not challenge Christine to do all the things that were best for her (as they were not comfortable for her at the time). But as a caretaker, resolute strength kicks in and helps you to see to it that your loved one follows through with all of the doctor’s recommendations.

I must say, and Jay would wholeheartedly agree, that Christine was a wonderful patient! She did everything we asked of her, even in the throes of many tough moments and hours. Her incredible will, positive attitude, and faith in God made all the difference. I am so thankful to the Lord for giving Christine such strength and perseverance, for a marvelous, brilliant doctor and medical team, for a successful surgery, for His help to Jay and me as we cared for Christine, and for Christine’s continuing recovery.

TIPS FOR CARETAKERS

Work hard to stay organized, even though it takes extra time and effort.

Anticipate scheduled needs – constantly prepare for “the next thing.”

Write everything down as it happens. Utilize the medications spreadsheet provided by the Clinic. Record in detail the times and amounts of medicines and vitamin/mineral supplements as they are given. Especially in the early days following surgery, in a separate notebook, record daily fluid and nutritional intake (at least until you are sure the patient is drinking the required minimums of fluids and nutritional supplements each day). Record walks, rests, ice bag change times and later, heating pad sessions. All of this attention to detail will help you stay organized and will save you from questioning yourself later and struggling to remember – potentially in a time a stress - thus allowing for the best patient care.

During the hospital stay, be informed as to the doctor’s orders for your patient, and be vigilant as to the care the patient is receiving. Even though you are not the primary caretaker, humans are fallible and can make mistakes, and you may pick up on something that has been missed by the hospital staff. If you question anything or have any concerns, be assertive and speak up. And always ask for anything needed, especially fresh ice for the ice pack, any special beverages or flavors of nutritional supplements that could better appeal to your patient, and extra washcloths (unless you are blessed to be right next to the hospital’s linen closet, as we were!).

Per doctor’s orders, in the hospital, help your patient walk every 30 minutes, without fail. Be very encouraging, as it is quite an ordeal for your patient (and for the care team -- getting everything unhooked and ready to travel!), but it is so important to recovery. On the walks, carry tissues or a washcloth and have the small plastic pan handy, if needed. (As you record a list of the times of all the walks, there should be a great sense of accomplishment for everyone!)

Keep your patient’s lips moistened with medicated lip balm, especially in the hours following surgery when she is not even aware of the need.

Once released from the hospital, provide for your patient the most pleasant environment possible for her recuperation. Encourage walks in the outdoors and activities that are interesting and engaging. On all outings, be sure to carry supplies needed: water or other fluids, a syringe and medications if they are scheduled to be taken during the outing, tissues, lip balm, sunglasses, hand sanitizer, and a note pad for communication.

If you are staying at a hotel, be certain to get a room with a bar sink, refrigerator, and microwave. These are absolutely essential.

Before the time the splint can be unbanded during daily intervals, medications in pill form must be crushed and added to fluids for ingesting through a syringe. We found that a plastic pill crusher available at any pharmacy is not as effective as a conventional mortar & pestle. In a pinch, crush a pill with the back of a spoon in a ceramic bowl or cup. We made a point not to add medications to Ensure or smoothies, as the taste was unappealing and would later be associated with those needed nutritional supplements. We usually mixed crushed pills and poor tasting liquid medications with Gatorade.

Keep up with pain relief, as needed. In our case, though our patient tolerated Demerol well on Days 2 and 3, we reduced the Demerol dose by half on the night of Day 4 since we thought it might have contributed to our patient being nauseous. By Day 6, our patient was moderately comfortable with taking only Liquid Tylenol in the daytime and the half dose of Demerol at night. We would always give her a half dose of Demerol (and later, Tylenol) in the pre-dawn hours so she would not wake up in too much pain. The surgical pain seemed to subside markedly by the end of the first week following surgery.

The doctor’s routine authorization (on about day 5 or 6) for his patients to remove the splint during five 15-minute periods daily is a real turning point in the patient’s case. Although it is difficult and challenging to accomplish in only 15 minutes splint removal, Therabite exercises, eating a no-chew meal, taking medications, cleaning the splint, cleaning the mouth and teeth, and re-engaging the splint and its banding, after a few times successfully accomplishing this routine, the patient feels more in control of her recovery. Confidence is built as she begins to gain back her self-sufficiency. Coupled with our patient then being able to eat a variety of soft “regular” no-chew foods, we found that this day was quite uplifting! Of course, the exercises and added activity to the jaw and teeth brought a bump-up in pain, but that seemed to subside after a day. The key in this phase is being well prepared for each break with food and medicine, as the patient cares for her splint, jaw exercises, and hygiene. The process quickly becomes quite routine and manageable.