The Need for Caregiver Support
Below is an interview with M. Ortega, Caregiver Support Specialist with WellMed, which is a company of United Healthcare. Previous to her current role, M. Ortega and her family served as missionaries to Southeast Asia.
Sara: Thanks for agreeing to meet with me and talk with me about this unknown and huge need. I'm really interested to hear all about your perspective of caregiver support. I think what we're going talk about today is going to reinforce what I've been thinking in regards to this topic and I’m eager to hear your perspective on the need for caregiver support.
Let’s start off by explaining your role like what you do for United Healthcare, under the umbrella of WellMed. Then I would like to hear how this role is beneficial to the patient and or caregivers of patients.
M: OK, so my position is called the “Caregiver Support Specialist” and this position was made to help caregivers get support, because as you and I know, everybody's focused on the patient and often forget the integral role that the caregiver plays in the overall health of the patient.
Let me back up a bit and explain how this program came into existence. There was this doctor, I forget her first name, but she's at the University of Texas Health Science Center in San Antonio. She started to see that the patients would come in with their loved ones. Then, she noticed that as time went on, the family members who were the primary caregivers looked worse and worse and worse, like they weren't taking care of themselves. She realized that the caregivers of her patients were actually struggling quite a bit. So, they developed a program to help caregivers learn how to identify their stressors, cope with stress and be able to live in a healthier way, even though their lives are now consumed with providing care to their loved one.
WellMed ended up being established to provide those services and others like it. That particular program has actually grown to become one of our primary programs: helping caregivers learn about stress and how to manage it. Another thing that we do is have teleconferences where we address all kinds of stressors and burdens that caregivers face. Being a caregiver is a huge burden. They are not like paid providers or paid caregivers, but have a much more intimate relation with the patient as a family member. Another huge difference is that they never get to escape from providing care for the patient. Paid personnel can go home and rest and then go back to work the next day, but a family caregiver is there 24-7. Many times, family caregivers are in situations where they have no idea how to take care of their loved one. We forget that caregivers are often lay people. They do not have training in medical care.
I have a case I just got recently where the caregiver’s husband had a massive stroke in January. He has no insurance. He's in his 50’s. He always worked, but never had insurance. So, we're now in mid-April and he has not had physical therapy since the very beginning of his injury. Because he hasn’t had Physical therapy, he is now bed-ridden and his wife is desperately trying to find ways to get help for him. They have now been assigned a case worker that’s handling the resources for the patient side of the case. That case worker then called me to help with the wife’s side, because the wife is really stressed out and is struggling with depression. Come to find out, the wife didn’t even recognize that she was depressed, but it was noted during one of our assessments that she was actually pretty depressed.
Depression in caregivers is very common. In taking care of their loved ones, they are actually taking on new roles as primary breadwinners, paying bills, when that was previously their spouse’s role, and more. On top of those role changes, the caregiver moves from being a spouse to a caregiver-spouse, meaning that the essence of their relationship has changed. And now, as a caregiver, they are having to learn new “medical” skills, while their days are filled with caring for someone without respite. And often being an emotional support to their loved one who has had their life turned upside down. Those are a lot of stressors, and when we look at the whole picture it is not surprising that so many caregivers struggle with depression.
Another thing to consider is how isolated caregivers are. If they are church people, they are now isolated from their church family and their support system. They no longer can attend church functions because they cannot leave their loved one alone. And often their own extended family is struggling to know how to help them because they themselves do not have training to really help the patient when the caregiver steps away. So, after a while, though they don’t mean for this to happen, extended family members don't go over as often, because they just don’t know what to do to help.
That was what had been happening with the case I previously mentioned. As I previously mentioned, when the wife took an assessment, she was very depressed. That assessment gave us an opportunity to refer her to a doctor and counselor to help with her depression.
Another way we help fight depression is by forming community through support groups. These groups help people to be able to talk about their problems. What I do on a regular basis is try to find ways to help people either connect with others that are going through the same thing, or provide education by giving them articles and other resources. Many organizations like the Stroke Association have wonderful resources that come as brochures and booklets. However, these resources don’t help anyone if they are not given to the patients and caregivers. Caregivers are in such a state of stress and are so overwhelmed that they can barely handle anything. They do not have the time or bandwidth to get on the Internet and look for resources.
When it comes to education, my position is key because I can give them information as I run across new and old resources. I often think, “oh yeah that person would probably could use that information,” and then send that resource over to them. Information gives people power to care for and accommodate their loved ones better. I also hope that through education, caregivers can learn that self-care is, in the long run, care for their loved one. Education also helps them be prepared for the long road of complex diseases, like dementia, by knowing what is coming before it hits. Education teaches them what to do when dementia completely changes the personality of their loved one. All of this education only helps the caregiver love and care for the patient better.
Have you seen that pouring into caregivers gives them a better ability to care for their loved one?
I think part of it is letting people know they need to take care of themselves first. If they don’t take care of themselves, they will not able to care for their loved one. Actually, I have noticed that those words are very soothing for the caregiver to hear, because they haven’t been taking care of themselves, and for the first time in who knows how long, someone is focusing on them. In fact, I have had several people tell me, even after their loved one has passed, that if it had not been for the Caregiver SOS Program, they don’t know what would have happened. For these people, by the time their loved one passed, it was ok to let them go and feel that relief. There was no guilt for having those feelings, because they recognized that there was so much work that went into caring for their loved one.
This is hugely important because caregivers often have very strong feelings of guilt. Especially in circumstances where the disease process is very drawn out and taxing. It is common for caregivers in that situation to wish that their loved one would just pass, because they feel as though they are already at their limit and cannot imagine their current way of life to continue on. Immediately, they feel the guilt of having those thoughts. what they don’t realize is that those feelings are completely normal. Often, these feelings and struggles are not verbalized unless we provide a space for them to share these feelings. In our group settings, those feelings are commonly shared and it helps these caregivers- knowing they are not alone in both their emotions and struggle with guilt.
Sara: Have you noticed any improved patient outcomes overall with caregiver support?
M: Yes, I do. One reason why I think they have improved outcomes is because these caregivers are getting better education. Often these patients are taking numerous medications. And when a caregiver voices confusion over the medicine regimen, I can refer them to a pharmacist. The pharmacist can then explain the medications and streamline schedules. I think in the end, caregivers are not made aware of the abundant resources available to them- from referrals, to apps, to practical tips and products that make their care easier. As I mentioned before, caregivers don’t have the time or bandwidth to be searching for these things on their own. They need to have these resources handed to them, otherwise these vast number of resources don’t not actually serve their purpose- making like easier for the patient and caregiver.
Sara: What barriers do you see impede caregivers from getting the support they need from your program or others like yours?
M: For the people that are taking care of someone who is bed bound or has dementia, they have it the hardest. They cannot leave their loved one. We actually got a grant and have been able to provide support to caregivers by providing respite services. We have had several people take advantage of this particular service. Overall, finding respite care is the biggest struggle, because people work and family and friends don’t really know how to care for the patient well enough to give the caregiver a true break.
Sara: What are some practical ways you have been able to bring Christ into your caregiver support work? And how has brining Christ helped or hindered your work?
M: Often several times a day I will ask caregivers if I can pray for them. I have never had anyone say no. Then I pray right then and there for them. Also, everyone talks about how spirituality is an essential aspect of a person’s life, which is true. We are spiritual, emotional, and physical beings. Everyone always talks about how important it is, but rarely does anyone actually implement it in any way. And how do you do it in a secular world as well?
One organization that is out there doing it is and organization called Methodist Healthcare Ministries (MHM). And they have a lot of programs, including nurses who are out in the community providing education. These nurses are often based out of a church. One of their programs is called Living Compass, which works to address the spiritual side of patient care. I have referred several caregivers to this program. This program is especially beneficial for caregivers of loved ones with dementia. After a while, these caregivers are unable to attend church, because their loved one becomes too disruptive for formal gatherings. And so, these caregivers had become more and more isolated while their spirituality became weaker and weaker. This program meets this need. We found that our caregivers left that 7 week program feeling great. There was prayer time, with set discussion topics, and spiritual concepts interwoven throughout the time. The outcome of this program is community and group support and is built for individuals who need community and spiritual support during incredibly difficult times. And that is really what these caregivers need.
Sara: If you had a doctor or nurse in front of you and you had the opportunity to open their eyes to the needs of the caregiver, what would you tell them?
M: First, I would warn them not to forget that the caregiver is the one person who is going to make sure all their orders are being implemented at home. They are the ones who ensure the patient is taking their medicines. They are the ones who ensure the patient comes to follow up appointments. They are the ones who make sure the patient is eating well. Therefore, the caregiver is vitally important if they want to see that the patient is getting improvement from their orders and plan of care.
Second, the caregiver is an advocate. They are an advocate for the patient to the healthcare team, and they are an advocate for the doctor to the patient. They are the ones who are convincing the patient to follow the prescribed plan of care. They convince the patient to be confident in and adhere to the plans of the medical team. Often, doctors and nurses forget that the patient or environment is working against the prescribed medical plan. For example, a patient with dementia might spit out their medications. The caregiver is the one who ensures that those medicines are actually taken.
Third, don’t only look at the patient, see how you, as a clinician, can support the person who ensures your directives are being followed at home. One way you can take care of the caregiver is by connecting them with a program like ours. Doing so ensures that the caregiver will get the support they need. This is important even if they don’t immediately need support (which is rare), because they will absolutely need the support somewhere down the road.