Editor’s note: When trying to find the best way to honor nurses during nurse’s week, I was presented with a conundrum. I wanted to show respect for the work that nurses do, and at the same time want to be cognizant that our focus is on caregivers. I thought about all the people in my life, and got a “gift” thought – talk to Joyce Persek. I met Joyce when we both worked at Renown (then Washoe Health System) in Reno, NV in the mid 90’s. I have an immense respect for her professionally and personally. We hope you enjoy this story, her insights and emotions, and can embrace the knowledge she wanted to share with you both as a caregiver, nurse and “human” all in one soulful package. Read all the way to the end. It is worth it! Respectfully, Laura Furumoto – Marketing Director, The Caregiver’s Journal (and to Joyce, she nick named me “Snow White.”)
Our guest interview today is with Joyce Persek. Joyce is an RN, holds a Master of Health Systems (MHS), was a licensed alcohol and drug abuse counselor for 35 years. She also has an extensive psychiatric background, as she was director of nursing at West Hills hospital for 4 years, as well as Director LifeSkills psychiatric services for Renown for four years. Her clinical work has been extensive. Her nursing experience runs the gamut from medical surgical, ICU, orthopedic, and obstetrics. For the fire department, Joyce was a ride-a-long mobile intensive care nurse. Then after 15 years on bedside nursing, she became director of medical surgical and ICU at four years Saint Mary’s Hospital and four years at Renown. She was the health administrator for the U.S. Post Office, and had authority over 1,500 post office locations throughout northern Nevada and California too.
Outside her nursing career, Joyce has also been a direct caregiver for her family and friends for over 30 years. Her story unfolds in the Q&A session that follows:
Question: Joyce, tell me about your journey as a caregiver. How have you directly been involved?
Answer: I took care of my sister for two years when she died of brain cancer. It was a very difficult responsibility, because she had such a terrible death. Between losing her sight, her ability to think and inability to talk was a really hard for me to watch unfold before my eyes. Before that, when I still had kids at home, I took care of my mother who died of breast cancer and my father who passed from liver cancer. Today, I care for my husband Charlie, and have been for 6 years since he was diagnosed with a terminal lung disease. Charlie is oxygen dependent and he is pretty much home bound. He does go to church and go to dinner occasionally, and yet that is the extent of his journeys outside. Thankfully, he does his own daily living activities, like take a shower. However, I am the person who takes care of him all the time. I am 68 years old and I retired at 60 to focus on Charlie and his needs.
Question: As a nurse on the floor, what was your experience with patients and their caregivers in terms of the role they played and how they interacted with nursing staff?
Answer: One of the hardest things about being a nurse is having a patient that you are getting ready to go home, they are almost discharged, and you turn over the care to the family. You do your best to be sure that they – the caregiver – is ready to pick up where you left off. Many times the family either isn’t, can’t or do not think they can do it. It is one of the biggest challenges in discharging a patient.
Question: What are your words of wisdom to those families in terms of what they have in store for them or how they can best prepare themselves?
Answer: I would want to make sure they are aware of all the resources at their disposal, like Durable Medical Equipment (DME) for the home, or that they can access home health care or respite caregivers for part of the day. I need them to know that they are not alone – not really – even though at times it may feel that way and a bit overwhelming.
Question: Why is that important to you personally?
Answer: Being a nurse, I found one of the hardest things to do was let the patient go, and you give them resources, and then you wait. If you see them come back, then they did not succeed. It happens for myriad reasons. Perhaps the patient was uncooperative. Maybe the family was not adequate in their caregiving. The discharge paperwork is typically thorough and lined out well, but not everyone is a “good” patient and follows instruction. They may walk on their broken ankle within 48 hours even though they may have instruction s that say, “stay off of the ankle for two weeks.” All manner of things are possible.
Question: As a nurse, how is that hard for you?
Answer: We do our best for the patient while they are in the hospital. As a nurse, you feel like you get them to a certain point and they regress back. They have a poor outcome and that’s sad. It is two steps forward and one step back. That is challenging for everyone involved.
Question: Tell me about a very memorable positive experience with a patient and their caregiver.
Answer: I had a friend who was admitted to Renown with brain cancer. I worked with her husband and visited them a couple times a week. He was able to take care of her until the end because he had me to help support him. He was able to keep her at home and let her die at home. He got a hospital bed and everything he needed to do. Although terminal, the outcome was good because she was able to die at home. That is a good feeling, knowing the family has dealt with the reality. Although the outcome was death, it was a peaceful death and she did not have to die in a hospital.
Question: What do you think are some of the biggest needs for caregivers out there today?
Answer: It is the need to recognize when things are out of balance. Caregivers typically do not take care of themselves. Their needs go last. When it gets to that point, they are like a car and their tank gets empty. That is what happens. They do not get a respite from caring, they burn out, then in turn are unable to give good care because they are not able to care for themselves.
Question: Has that happened to you?
Answer: Yes, as a caregiver that absolutely happens to me. I have found that if I am not busy, or not having a meaningful life, then I am not as good as a caregiver because I have not taken care of myself.
Question: As a person with clinical background and psychiatrics background, how do you motivate yourself as a caregiver given your past experiences with family and friends?
Answer: I have to plan to do things away from my husband. I head out to see my sister for a couple of days, or go to Chico to see my daughter. If I do not get my breaks, then I am in trouble. I have to plan. Then I have to plan for people to fill in the gaps. You cannot just leave. The “patient” relies on you not to just leave. You have to be sure it is all covered.
Question: How do you do that? What resources do you use?
Answer: I use my family. I count on them to back me up when I want to do something and they really come through for me. I have to plan it, schedule it, and get a commitment from these people so that I can go and not think about it. Just go and do. Remember two years ago when I was so down about my sister? [I had lunch with Joyce just after her sister had passed. She was in bad shape.] I was not taking care of myself. At the time, I was caregiver to my sister who was dying of brain cancer and my husband Charlie who has a terminal disease. It was too much for me. There were these two people who needed me daily. I was being split in half, and there was none of me left…for me. I fell into a deep depression. There was no joy in my life. My life was all about other people.
Question: For people who may be reading this and find themselves in a similar situation, do you have any recommendations?
Answer: I sought counseling on an individual level. I went to the doctor. Remember, I have a psych background. If you are clinically depressed and you cannot get out of it yourself, then you need to consider getting a prescription for antidepressants. However, you have to reach a point where you cannot pull yourself out of the depression. My counselor also taught me how to do some meditation and that was part of my list of things that I had to do. I would (and still do) sit quietly for 20 minutes a day and just say over and over, “A river of peace runs through me.” For that 20 minutes, I am not thinking about any of the problems – mine or theirs – in pure medication and pure relaxation. We all – caregivers or not – should do more often anyway. It is good for the body and the soul. I am very religious so I believe that sitting down and spending time with God brings peace for you. If you are not religious, you can still be spiritual and there are many ways to achieve the same thing through other means.
Question: What other insights do you have for caregivers, especially sandwich generation caregivers who are taking care of their kids, parents and grandparents at the same time?
Answer: When my mother and dad were dying, I was working full time and taking care of three kids. I was doing all of that! I had to get my rest. I had to meet the needs of everyone in the family. I could not just let me family slide because I had this obligation to take care of my dying parents. It was stressful and fatiguing. That is when you need to take a day or two and have a respite.
Question: How did you prioritize all those demands?
Answer: I made a distinct choice that not all people may make, but I had to do it this way for me. I actually put my husband first, my kids second and then I made my dying parents my third obligation. I gave my parents all the time that was available after taking care of the needs of my immediate family. I had to engage my sisters and my brother in helping me with the time management, making sure that we all knew who was doing what on which days and scheduling everything out.
Question: What is the role of open and honest communication in this caring for the caregiver process?
Answer: First you have to let your needs be known and get a commitment from others that they have to work with you. I was so lucky because they relied on me to organize it, take care of it and see it through to the end because I was a nurse.
Question: As a nurse, do people in general gravitate towards you when they need caregiving?
Answer: Yes they all do. They call me with all of their ailments and questions and after they see the doctor. They call me and talk about their appointments. If there is anything going on medically, they get in touch with me and say, “what do you think” and “what do I do?” I get to be the family consultant.
Question: Do you think that is a common experience for nurses in general?
Answer: I think it happens to all nurses. I do. I think that if are the nurse in the family then you get it.
Question: So as a nurse, your day or night does not end with your shift?
Answer: It does not end with your shift because you could get home and get a call with your sister who has an illness or grand-daughter is sick. You are always on call and available for the family and that is just the role I have had for 35 years.
Question: So in light of that fact, what would you tell others – ether caregivers or patients or their families and loved ones – about how to treat nursing staff and how to interact with them knowing now – through this article about the 24/7 being on call?
Answer: I think you are not going to be able to have people not call you. That will not happen. You have to know when to refer them back to their doctors and when it is something you have no knowledge about and they need to do a consultation with a medical person. Know your limits. I can look at a leg and not tell it is broken without an x-ray. You need a medical license to do that. I cannot tell if you have strep throat without a culture. Sometimes they want to put you in a position or give them information that prevents them for going to the doctor – because they do not want to!
Question: If you had a prescription for the way nursed should be treated or can be treated ideally by the people they come in touch with, including patients and caregivers, what would you say? What is your best advice on how to engage with nursing staff?
Answer: As a nurse, I would ask that you please be very open and honest. Full disclosure is so important when talking to the nurse. If you only get part of the story, you only get part of the answer. This is especially important when talking about medications. A nurse needs to know when medications were first started, when they noticed changes, how much of the drug they have taken so far, etc. There is so much you need to know in order to be able to answer them and help them in preparation for seeing the doctor. What they will need to tell the doctor. Do not forget when the doctor comes in, you need to tell them about the rash and when it started, the timing as to if the rash started about the same time as the pills or how long after, or that you were feeling good until meds and now you are nauseas. They need to do full disclosure on things so we know the cause and effect.
Question: In terms of being a human being and a nurse, why did you have so much passion for your profession? You did it for a long time correct? 42 years?
Answer: When I was 10 years old, my brother fell off a cliff and fractured his face and knocked out all his teeth. I found him and took him to a park that was close by and none of the adults there knew what to do. They did not even know to call 911! I took him home and I was so upset, that I said to myself “This will never happen to me again.” That was the day I decided I was going to e a nurse, and I was ten. It is true. No one knew what to do! I was ten and I thought, “What in the world is this? I will know what to do when I am an adult!” And I did. .
Question: What is those most satisfying thing about being a nurse?
Answer: Well, I think it is when you see people get better. The patients comes in really, really sick, then they get better, and you see the family who was so upset initially then they are relieved at the positive result. You get to witness the family unit. There is nothing that brings a family together more than someone they love who is in a medical crisis. You get to see the worst and the best. Some families bind together. Others blame each other, are angry and act hopelessly, “Why did this happen to us?” I really enjoyed being a floor nurse. I got a lot of reward from that. Taking care of them, being at the bedside. It was all-time favorite thing.
Question: What did that feel like? What did that feed you?
Answer: It made me feel worthwhile. It was rewarding personally. I always went home from work thinking I made a difference in somebody’s life. It wasn’t just a job or a paycheck. When I started out I made $3.39 an hour and I was tickled-pink to get it in 1967.
Question: What is the most satisfying thing about being a caregiver?
Answer: Making a difference. Being able to help people when they are most vulnerable. When they are at their worst. Being able to comfort them, give them care and make them feel better. You can also help relieve their pain with pain management techniques including medication.
Question: Joyce, to wrap up, are there any other words you have for folks to help inspire them?
Answer: We have not talked about the number of times I have been with someone that has died. To be there with someone who is dying alone and to be there so they are not alone is a special gift. I have had the opportunity to be with people when they died because I have been a nurse so long. It is special to be with them when they transition to the next place. I believe in heaven, but a lot of people don’t. So I was just there to be with them to face whatever was next. I think it very sad when someone dies all alone. It was comforting to tell the family, “Yes, I was there at their bedside and they were not alone.” That is comforting to the family. That there was someone there with them. I used to work ER and people would come in and die and I would be there. Let’s say the family could not make it to the hospital quickly enough to say goodbye. I would tell them I was there with them holding their hand. It was important to the family. I have seen anyone from babies to old people die, there isn’t an age that I have not seen. The hardest for me is children. Because they did not get a chance to live, to be their fullest potential.
In terms of inspiring nurses or potential nurses, I think it is rewarding to go into a helping profession. People who do get into nursing – versus someone who is another industry that is more technical or process oriented – get great rewards in their work. My experience has taught me to realize how precious life is, as well as the importance of family. It taught me that you can be perfectly fine now and dead in a month. It has taught me to live each day fully, take as many trips as you can, have dessert as often as you want, because you never know. My sister passed within nine months of her diagnosis.