As spouses or significant others, being a partner in each other’s health care can cause great stress.
In my childhood memories, my mother was the one who took care of me when I got sick. She also took care of my father when he became ill, but when she developed health issues, my father rarely acted as a caregiver.
Because of this, I didn’t question my first husband’s expectation that I go to the store for chicken noodle soup and applesauce when we both came down with the flu one year.
But today, my husband and I work as partners in our health.
In our household, we are dealing with his diabetes and his stage four renal failure that has led to peritoneal dialysis.
Ever since I met my husband, he has had diabetes (a thing you have, not something that defines you) and we have been conscious of carbs and the importance of counting carbs. We have, for the most part, had his numbers under control.
Enter stage four renal failure and the necessity to start dialysis. We weighed our options and took the route of peritoneal dialysis to maintain our active and traveler/camper lifestyle instead of needing to sit for four hours, three times a week in a dialysis center.
In peritoneal dialysis, they surgically place a port into your abdomen that will attach to the equipment that drains and fills your abdomen with a dextrose solution. That solution, at least for the first four weeks, sits in the abdomen for four hours to absorb the toxins in your system before you drain and fill again. (This drain and fill is known as an exchange.) We do the exchanges four times a day at home and it has become routine.
We knew that the solution used would affect his blood sugar numbers, but we weren’t ready for the numbers to be over 300 for over two weeks as well as venture over 500 (normal blood sugars should be between 80 and 120.)
They began him on insulin, but the initial dose did little to drop the numbers. Monday (Yes, just two days ago!) they upped the dosage with the instructions to call in two days if the numbers were consistently over 300. Surprise! Last night we were over 400.
Today we were scheduled to talk with the diabetic dietitian. She was alarmed at the numbers, and now I am awaiting a call back from the endocrinologist’s office.
Be a questioner!
I have been calling on my two-year-old curiosity and tendency to ask “why?”
Hubby’s been put on insulin, but his numbers aren’t dropping?
Initial answer? It’s a guessing game and trial and error game. (Not an acceptable answer for me. I’m sure hubby is not the first patient that has show this tendency.)
It hit me that if the dialysis solution is a dextrose (or sugar) solution, it MUST have a carb count.
What is the carb count in a 2.5% dialysis solution bag?
No initial idea from the diabetic dietitian, the renal dietitian, the dialysis nurse, or the dialysis nursing director. But, the dialysis nurse decided it surely should be written on the bag and went to check. She came back with the idea that it contained 2.5 grams of dextrose.
For the full 2000 ml bag?
Unsure, the dialysis nurse went back to check. She brought out a bag: 2.5 grams of dextrose for every 100 ml. So, since ONE gram of sugar is equal to ONE carb, the 2000 ml bag contains 50 carbs. Hubby is ingesting 50 carbs before a meal PLUS the 30 to 60 carbs he is allowed FOR a meal. YIKES!!!
How could any medical professional not take these numbers into account when prescribing medications and insulin?
Coping mechanisms that are getting us through this.
In the past two months, we have been pulling out every coping strategy that we have ever learned. Here are the ones we are relying on the most.
Laughter is great medicine. Just watch the effect of humor introduced to the patients in the Robin Williams’ film Patch Adams. This 1970s doctor, Dr. Hunter “Patch” Adams uses humor as part of his treatment for patients. The medical world at that time didn’t agree with Dr. Adams.
2. GET ENOUGH SLEEP
Right now, this is a difficult one for us because the last dialysis exchange begins at 10:00 pm which doesn’t allow us to crawl into bed until at least 11:00 pm. Then, the alarm goes off at 6:30 am so Hubby can take one of his meds by 7:00 am (just before the first exchange begins) and the rest of his meds at 7:30 am.
If we are asleep when our heads hit the pillow at 11:00 pm (Right? That almost never happens.), then we can get in 7 1/2 hours of sleep. Not enough when you are under extreme stress.
So, we nap often, just like our doggies do.
3. GET EXERCISE
We have a gym membership, but we haven’t been able to use it in the last month because the high blood sugars make him light-headed and exhausted. I haven’t been going to the gym because I don’t want to leave him alone. My exercise? Get moving around the house. Every hour, get up and do something physical for a few minutes.
When my kids were little and I was a single mom, I would put them to bed and walk up and down my driveway with the living room window open so I could hear them if they called. I have even found myself walking up and down the hall in a hotel, if I can’t go far from the room.
No matter how you get it, you need, as a care-giver, to get some exercise every day.
4. EAT WITH YOUR HEALTH IN MIND
Being under stress finds me reaching for comfort food. Being under stress and running from appointment to appointment with the medical profession not taking into consideration a patient’s nutritional needs finds us at only a handful of fast-food restaurants. Neither hubby or I can stomach most fast-food restaurants.
Sometimes eating with your health in mind requires me to step back and evaluate what I want to make for a meal, or what I want to stop and purchase.
Most of the time, I am looking for fresh, non-processed (canned or frozen or dried) choices. Fresh fruit, fresh veggies, homemade cookies.
5. WRITE THINGS DOWN / RECORD INFORMATION
Lately, I’m recording everything: Hubby’s vitals, carbs, sodium, calories, fats, potassium, phosphorus.
But I’m also recording questions and ideas that might help.
6. TALK, DON’T LECTURE
It is so easy to get into the position of lecturing a person, or at least having it sound like lecturing. “You need to take your meds.” or “You should …” or “You have to …”
Does it sound like something you do? I did it for a while. It’s an easy trap to get into. But when you step back and start with a question “Did you take your meds?” or “Would you like for me to …?” or voice your own concern “Your high sugar numbers scare me.” you open up communication and conversation.
7. TAKE TIME TO ESCAPE THE CONFINES OF THE HOME
As a care-giver, this is important to not just you and the person you are caring for, but for you alone. It doesn’t mean going on errands or running to appointments. It means to go out and do something that is not part of your routine, something you enjoy.
It gives you breathing room; it gives you a break from the stress; and if you do something by yourself, it gives you a break from the other person.
8. HAVE A SUPPORT NETWORK
When health issues are on the table at home, it is good to have someone else to talk and confide with. Your partner may not want to hear that the health issues on the table are scare you — they scare that person as well.
Hubby has a couple of online groups he can converse with. I have a couple of people who are in my circle that I can talk with.
It really doesn’t matter if the other person or group is knowledgeable about the health issues; it matters that they listen.
This article was first published on Medium.com on May 1, 2019. “8 Strategies to Follow as a Care-Giver“
Thanks for reading.