If you are a caregiver you carry a new unique weight within your life. You have the emotion of someone you care for hurting, you want to do everything you can to help heal them, you carry part of a key component that drives another’s life, and on top of that you have to maintain your personal life within the new responsibility. A patient’s life with chronic illness is a weakened life within a world that is built for “healthy” people, and as a patient, we need help on many different levels. As a caregiver, you learn to adjust and figure out how to be the best caregiver to the person you have chosen to help, along with still maintaining your personal health and life to the best of your abilities. Overall time allotted to the patient can look very different for each caregiver; either you take on the role as a full-time caregiver by having the patient live with you, you may be that who makes sure the patient gets to their appointments, or you are somewhere in between those two extremes. No matter how much your role exist in another’s life, it is important to understand what your role can be and how you can be the best partner within someone else’s healthcare journey.
Know that your time, love and sacrifices never go amiss. We as patients may not always express our gratitude, but our perspective of life has shifted and sometimes it can be difficult to be outside of the symptoms that now are apart of our lives. We try to be the best advocate of how we feel and what is happening within ourselves, so even when we may not seem like it trust us that you are important beyond knowing. Even though you are in a position where you see our best selves and our worst selves, it doesn’t mean that we love you less or hate you, it means that this is a really hard journey for us, as patients, be forced to push our bodies in new ways.
Part of the role as a caregiver is to make sure you can be the best match as a caregiver for the patient. Check out “How to Find the Best Caregiver” article, to see what some expectations may be of this type of relationship. Your ultimate role is to be the best partner within the health care journey of someone else.
Note: “How to Find the Best Caregiver” article describes what a caregiver is.
Life changes to expect as a caregiver:
Caregivers tend to be, but not limited to, the ones closest to the patient and they may not know that they have taken the role of a caregiver, until ten steps within the process. No matter where in the process you are there is the opportunity to recognize if you can be a proper caregiver to the person needing it, or not. Below is a list of changes that one could expect the sudden effects of chronic illness.
Caregivers Life Changes:
– Vacation time may now be spent on going to appointments or helping the patient out.
– Flexibility is key. Depending on what is going on with the patient, they may need you at different times for different things.
– The patient may need to live with their caregiver or have the caregiver live with them, for either a brief or extended amount of time, depending on the status of their health and financials.
– Unfortunately, finances become an issue with someone with chronic illness, where they will have to rely on their caregiver or someone close to them a lot. They may need help with food, bills, rent, etc. To best understand what is going on and how to be the best help within the caregivers’ personal limits come up with a plan with what they need, what you are willing to offer and create a plan. If they have to become financially dependent on the caregiver then remember that this is extremely embarrassing, difficult, and something they can’t control.
Patients Life Changes:
– Relationship roles and types will change or shift.
– The patient may not be able to work anymore.
– A drastic change is going on within the patient’s bodies that they can’t control and are trying to best understand their new personal physical limits.
– Feeling that their life is changing in a huge way and the idea of having less and less control is more prevalent than ever.
– The patient bodies are now viewed very different with themselves, along with everyone else.
– Also, check out “What does the journey with chronic illness really look like?” article for a little bit more of a perspective on how their life might be changing.
What are the roles as a caregiver?
As a caregiver, there are certain roles that are potentially part of what will be needed. Check in with your person to understand what they may need from you and what may be a potential. Having a routine of checking in with them will help the communication and allow for a better partnership so you both know what is the need and what you can personally offer.
– Scheduler: Appointment are key to figuring out what is going on and how to take care of the patient. If you are not the scheduler make sure that the patient knows when you are able to go to the appointments if they need you to.
– Transportation: Depending on the chronic illness, the patient may not be able to drive, or only drive during certain situations. Some situations where they may need you include; driving after procedures, surgeries, or even just rough appointments. Figure out if you, as a caregiver, are taking their car or yours, along with what is the most comfortable for them.
– Motivator: As a patient, there are certain times when we just need a little boast to say we can do it. We want to know its ok if we can go through an appointment, we can try a new treatment, we can cry if we want to. Set boundaries on when you are able to be that motivator, that encourager. If you can’t be that then let them know and help them find someone else who is better suited for it.
– Chef: Depending on the chronic illness, you as a caregiver may have to take over meal prep or some meal prep. Talk to the patient to find out their dietary restrictions, if they require their meals to be taken at certain times, or more frequently. Make sure that you know what is needed if you play this role because food can be crucial for their health.
– Private Helper: Sometimes an extra set of hands in the most intimate areas is important but hard. Someone who will be in a way a home “nurse” taking care of things that can be so embarrassing and so much more detailed then the patient likes to admit. Our bodies are trained to be private and give away when we desire, but give away in a more beautifully detailed way. Chronic illness can force us to expose our body that is not natural and in ways that we had hoped no one ever sees us.
– Second Hand: The patient may need a second hand with different pieces that either they can’t do physically or mentally on their own. This is different than above because it may not be as intimate, but it still changes our personal limits. This may include help with treatments, help with physical therapy, etc.
– Researcher: It is great to understand what is going on with the patient. It is important to understand potential symptoms, treatments, conversations, etc. If you find something that is interesting have the conversation with the patient about it, but ultimately let them have the choice about what they do with their body.
– Secret Keeper: This is not your journey. It is not your journey to tell everyone. You are apart of someone else’s journey and it affects your life, but the details of someone’s life are their own. Talk to the patient to see what they are willing to have exposed because you don’t want to lose their trust.
– Traveler: Depending on what is required and what is available, traveling may be required to get the treatment that is needed.
What are questions that you should ask?
No matter what stage you are in within the patients’ health care, you can always ask questions.
Questions to ask the patient as a caregiver:
Check out the article “How to Find the Best Caregiver” for questions that the patient should feel like they can talk to you about. Be open and honest with the patient and ask anything you feel that you need to, but know that it is ok for them not to tell you.
– What do you need from me?
– What do I need to know about your medical history?
– How can we create the best roles for each other moving forward?
– How often should we check in with each other to make sure our routine is working?
– This is what I can provide for you, is that ok?
Questions to ask a health care provider:
Let the patient be the director, as much as possible, when having a conversation with their healthcare providers. Ask the patient prior to appointments if it is ok to interject if you have questions. It is great to be a second set of ears, but time with a health care provider is so limited and it is important to make sure that the patient gets all the questions they need to be answered, because it is about them and their life. A way to make sure that both of your questions get to acknowledge and you both feel good with an end goal; set an hour aside before your appointment to go over all the questions you and the patient have and write them down on a piece of paper to come up with a plan.
Below are general questions. Specific questions will be tailored to the patient condition and examples are not listed.
– What is going on?
– What are the timelines?
– What are test and procedures that you recommend?
– What do you feel would be the best option of treatment?
– What are potential side effects of ____ treatment?
When your patient seems to feel overwhelmed this is when you would ask the questions for them, by reading the situation and seeing where they are. Another great reason to set time aside to go over everything.
Also, note health care providers will know who has control over the conversation and the health of a patient. They will always ask the patient what they want for their own safety and comfort. Make sure that you don’t control the conversation and allow it to be the patients’ conversation.
What if you don’t feel comfortable medical terms?
If neither you nor the patients have any history within the medical field, it can be difficult and overwhelming to sometimes understand what health care providers are saying. Health care providers should be more than happy to offer explanations for any terms that you may not understand. There are so many words that can be thrown out concerning anatomy, medication, treatment, procedures, types of illness, etc. Sometimes these are theories and will have nothing to do in the end with the patient and other times they have a lot to do with what the patient needs. One option for a patient is knowing that the time is limited with health care providers, meaning each term the patient may not understand you could either have the health care provider explain it or ask them to write it down so the patient can fully consider all their options. There is always the option of contacting the office if you still aren’t fully sure what they meant, once you have left. You never have to make a full decision while in the office in front of a health care provider, make sure you know what is happening with the patient’s body is important to making the right decisions for them.
You do not under any circumstances have had to have medical field experience in order to be a caregiver.
Remember that even though you are taking the time to care for someone else and play that role within someone else’s life, it is so important to take the time to take care of you and your life as well! Keep the communication open as much as possible!
What have you found to be the most important role as a caregiver, within your journey with chronic illness?
T r u l y , L i n d y