Monday, January 07, 2019

Caring is hard

Guest post
by Suzann Darnall

I am no longer just wife, mother, grandmother, “zookeeper”, and quilter. I have also become nurse, chauffeur, dietician, cheerleader, and pharmacist. In short, I am now a caretaker for my husband. Even though it has been 2 months since Pete’s surgery, about six weeks since he got out of hospital, and over a month since he required IV feeding or had a drain, I am still learning and doing new things to meet his “medical” needs.

It is not hard caring about him or even caring for him. It is just hard being a caretaker. It is not like the usual nurturing that I have done as wife and mother. It is not even like the caretaking I have done for sick husband, kids, or critters. This is hard. It is a physical, emotional, and spiritual roller-coaster. I am exhausted at the end of the day. Usually pretty tired at the end of one portion of our daily requirements.

We have a list of things that must be accomplished around breakfast, lunch, dinner, and bedtime. Which is better than the list we had when he required the IV and drain. It is also much less than the list we had when working to reverse any negatives after he was prescribed too much chemo. Chemo antidote week required ten (yes, 10) alarms each day for me to give him meds, treatments, or foods. We started at 4 am and finished after 10pm.

It is not just that there are four or ten sessions of caretaking, it is that each session has numerous items and takes time to complete. Even without leaving the house, except to feed my critters, I usually rack up well over 10,000 steps per day. Not surprising, my Sundays are no longer bigtime days of rest ‘cause I usually rack up 8,000+ steps while trying to “take it easy”.

On good days it is easier, but still busy. No matter how good Pete feels there are still meds, treatments, and foods that need to be prepped. completed, and/or recorded. I still need to make sure his feet get moisturized and his mouth gets cleaned . . . four times per day! I also need to make sure he drinks sufficient liquids to stay hydrated. He needs his temperature taken twice a day and his blood-pressure checked once a day.

Then, there are the days when things do not go well. The days he feels bad. Is sick. Hurts. Or doesn’t want to eat or drink adequately. The days I have to add nagging to my list of chores. The days neither of us enjoys. The days he wants me to just leave him alone and that is that last thing I can do. ‘Cause with chemotherapy it is not good to just curl up into a ball and ignore the world. Chemo works best and does least harm if patient keeps the system going. As his chemo nurse puts it, “Drink and pee. Drink and pee. Drink and pee.” The doctor added that patients who just sit or lay around do not tolerate chemo as well and do not recover as well. So, in our house, walking is added to the drink-n-pee mantra!

days are generally extra hard. Not only do we have to fit in all the necessities on the regular schedule, but we have to figure out how to do some of them while away from home and how to fit others into the time when we are at home. Hospital days also mean packing supplies for the patient and sometimes things for the caretaker as well. If it is a treatment day there is a lot of time to sit around and do nothing, requiring some kind of entertainment to help pass the hours a little more comfortably. Other hospital days involve lots of walking as you go from clinic to lab to pharmacy to appointment to treatment . . . or some combination thereof. And, let’s not forget the commute down to Brooke Army Medical Center. Just 45 minutes on a good day, in an off rush hour time slot. Forever if it is bad weather, there’s been an accident, or people are in commuter mode.

This is not just the life we have at present, this is the life many couples or families deal with nowadays. Pete and I know so many families and friends who are dealing with cancer and its aftermath. We also know families facing similar trials ‘cause of other devastating illness or injury issues. Every patient and every caretaker is facing the same kind of problems that Pete and I face each day.

Pete and I have been blessed to have family and friends step up to offer prayers, support, and service. Not all patients and caretakers have such encouraging situations. So, if you know someone, patient or caretaker, please take the time to drop them a text or make a call. Offer to mow their lawn, water their plants, pick up some groceries, or drop off a meal. Consider carefully before you just surprise someone with unexpected service though. Many patients and caretakers are already overwhelmed with their schedules without having something else pop up and disrupt things minus any advance warning. Particularly if the patient is having a bad day.

While it is hard being Pete’s caretaker, it is not hard taking care of him. It is difficult to figure how to do it all. It is exhausting. It is stressful and ofttimes makes me cry. My body often aches at the end of the day from all the extra work. But, it is my pleasure to be of service to the man I love and have loved for more than 41 years. To offer him tender loving care of a most necessary kind is an honor. He is my eternal sweetheart and I want him to always know he is important. I know so many caretakers who feel much the same way about the loved one who is their patient. I salute each and every one of them for being an excellent example to me. For mentoring me as I am learning this new addition to my role in life.

In addition to those who are now helping me, I was taught loving and caring for an ill spouse by my maternal grandfather, Hazen Sayre; my paternal grandfather, Douglas Dale; my mother, Patty Dale; my father, Curtis Dale; and my husband, Pete Darnall. I am grateful for their examples which showed me it can be done. Each and every day. In sickness and in health. For time and all eternity.

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