What Nobody in the Healthcare System Will Say to You as a Caregiver 1) You are an extension of the healthcare team. For example: When your person discharges from the Emergency Department, hospital, or even a skilled nursing facility, you may still have needs. And while these needs no longer require 24/7 nursing care in a hospital, as an example, these needs to be met in the home environment. Some examples of this may be that the patient still needs to be toileted or taken to the bathroom. The person may need wound care or dressing changes, or perhaps be given medications subcutaneously such as a blood thinner or insulin. These tasks may sound impossible or daunting for all kinds of reasons to you as their caregiver. This does not change the fact that the patient is discharging with needs that will require your help as the caregiver. Thus, you are an extension of the healthcare team. Possible Solutions: Ask if there are support services available to the patient or you as the caregiver. Such as Home Health or similar services are appropriate to bring into the home, i.e., Registered Nursing care or Physical Therapy. Consider hiring help such as an In-Home Care Agency for help with personal care needs, light cooking, cleaning and basic shopping needs. Perhaps outpatient services may be appropriate for a particular need; wound care or intravenous medications. 2) The expectation is for you to step up! Take responsibility, support and help your person (the patient). This one is really tough! Sometimes there are some really valid and real reasons why someone cannot step up to help, take responsibility, and support their person as the caregiver. Perhaps you are too sick, weak, and tired yourself? Or you have your own caregiving needs that are not being met, let alone taking on caregiving for someone else. Regardless of your circumstances, this patient may have needs that do not require 24/7 nursing care meaning they no longer need to be in the hospital as an example. Therefore, when the patient is medically ready for discharge to home with caregiver support, a plan needs to be in place for the patient and this may require YOU as the caregiver to take on a role that you may not be prepared for. This is where your engagement really matters. Taking a step back, not engaging, or even avoiding the situation does not stop the care or stop decisions from being made or even the discharge plan from moving forward. Your input is very important, and perhaps the healthcare team can help solve some of the concerns that you have and support you differently if given the opportunity? Potential Solutions: Solutions can look very different depending on the circumstances, and I am always happy to talk through your individual situation with you in my group coaching program called Healthcare Confidence™ Program. This program is designed to help you navigate your complex medical realities with education and support. You will have direct access to me in an online group coaching space where you will be able to ask questions and engage in a way that I believe will help you navigate your individual healthcare situation with more clarity and confidence. Again, I am offering a workshop this September so that you can learn more about this program so save your seat! Recognizing that stepping up, taking responsibility, and supporting your person does not mean that you have to do it alone! Ask the healthcare team for help and collaborate with the healthcare team Be straightforward and honest about your thoughts, concerts and questions so that they can better serve you and ultimately the patient. Lean on others such as the patient's family, friends, church family, neighbors, etc. Ask if agency assistance is a good option to consider, such as home health, hospice, or palliative care. Perhaps other services like food delivery, i.e., Meals on Wheels or Mom's Meals, for post-discharge meal coverage may be an option to consider. 3) You will be asked to do or perform tasks that you are not prepared to do or even want to do. Let me start off by giving you some examples of what you may be asked to do as a caregiver. Just to name a few: Transportation home at discharge, providing daily personal cares such as bathing, driving the patient to and from appointments, wound care or dressing changes, managing an ostomy, administering tube feedings, and assisting with intravenous medications or fluids. Can you imagine managing your loved one's new ostomy or administering their new tube feedings at home? These things all need to be done. There is no negotiation in that, and your loved one does not need to be in the hospital for these things. This may be shocking to you, but it is true. With all that being said, there may be some very real and valid barriers for you as the caregiver to do these things effectively or at all. Perhaps you don't have good eyesight, or you have poor dexterity related to impaired feeling in your fingers; therefore, managing anything that requires precision or strength in your hands is just not possible. Maybe you don't have a car or you don't drive anymore. Or the home environment is not clean; therefore, performing sanitary dressing changes is compromised. Potential Solutions: Again, the solutions will vary and may require tremendous coordination efforts, depending on the specific need, circumstances, insurance coverage, and more! This is where your engagement really matters as the healthcare team can help navigate some of these concerns from the start so that a plan can be in place that best serves the patient's needs and ultimately supports you as the caregiver as well. Perhaps Home Health can come into the home, or a Home Infusion agency? Perhaps this patient can go to an outpatient setting for services such as intravenous medications or IV fluids, dressing changes, etc. Perhaps placement into a skilled nursing facility is needed for a short time, or even a short stay at a hotel if the home environment itself is a concern. 4) You will need to make sacrifices, and your own health and wellbeing may be compromised. Well, doesn't that kind of punch you in the gut! And it could not be more accurate, so brace yourself! I want to encourage caregivers to do two things: One, take care of yourself, because if you don't, you will be of no help to the one you are needed to provide caregiving to. We have all heard this before, and there is something to be said for it, so please take this seriously. Take care of yourself. Two, advocate for the patient (and yourself). Many caregivers put themselves in a bit of a situation by.. Not speaking up, not asking questions, and just allowing decisions to be made without their input, or perhaps the caregiver just does what they are told to do … no questions asked because they feel that they don’t have a say anyway! This approach can create unnecessary stress and worry for you and the person you are a caregiver for. And perhaps this leads to a plan that ultimately will not work which results in patient harm, re-admission into the hospital OR caregiver burnout, caregiver harm and or the caregiver becoming the patient! Now grab a notebook because I am going to rapid-fire some thoughts and questions at you to use when engaging in the process and advocating for the patient and for yourself as the caregiver: It is 100% okay to say, "I need help with “X.” I do not understand the instructions you just gave me, can you please go over that with me again? Can you SHOW ME how to do this, not just tell me? Can you WATCH ME do this, not just tell and show me? Is there anyone who can help me once we get home? Ie: Home Health, Home Infusion, Hospice, etc. If this is indeed ordered then get the name and contact of the agency so if they do not show up when expected and or do not contact you to schedule the first visit you know who to contact. Does “X” (the patient) qualify for home health, and can you order that before discharge? Same here… get the name and contact of the agency so if they do not show up when expected and or do not contact you to schedule the first visit you know who to contact. When will the home infusion team be coming in to set up the IV medications, bring the supplies and do all the teaching? Get the name of the Home Infusion agency and their contact information before you take your person home! Can the supplies be delivered instead of me having to pick them up? Can the discharge medications be filled by the hospital pharmacy before discharge? I don't know if I can get “X” (the patient) out of the car once we get home. Are you able to order transport that will take the patient home and ensure he gets into the house? Will you order the DME to be delivered to the hospital room before discharge so we have it when we leave? Or will it be delivered at home? Get the DME companies name and contact details so that you can contact them if needed. Will you be sending us home with the enteral feeding product for the tube feedings? If so, is it enough to last until the Enteral Feeding team comes to our home? Be sure to get the name and contact information for this agency as the patients nutritional needs depend on them coming into the home with not only supplies but education and support on how to do the feelings. Now, this is a lot of sample questions for you based on the examples I used in today's episode, but the takeaway here is to ASK! And ask again if needed! Restate what you heard to ensure understanding. One more thing… I want to say thank you for being a caregiver. It is a thankless job. And the patient (your person… your loved one) is SO LUCKY to have you! So many people do not have anyone at all let alone someone that is engaged and truly there for them when needed! So please be kind to yourself, take care of yourself, and don't ever hesitate to
