Caregiving for a family member in the hospital is not easy, but it is manageable. Take a few minutes to review this article and use what you learn to reduce your stress and be there for your loved one.
Hospitalization of the person you care for is probably going to happen.
Physical problems increase with age. Studies show that one-third of the people discharged from the hospital are 65 or older. Older individuals are more likely to have multiple conditions and weak immune systems. Whether a planned stay or the result of an emergency, the caregiver needs to be prepared to manage a stay in the hospital. Hospitalization is disruptive and frightening for everyone.
COVID restrictions have limited or eliminated visitors, even family caregivers. Hospitals post their policies, you can look at the hospital’s website, or ask nursing staff. Can you be with your care receiver in the emergency room or in a regular hospital room?
What to take to the hospital
Take the following with you to the hospital, whether you are able to go in with your family member or not. Ask that these be added to your loved one’s patient chart. You should have copies of these at all times. Carry a portable folder or binder with information listed above as well as copies of summaries of recent doctor or hospital visits.
- Medical directives – These forms must be signed by your care receiver and witnessed, but not by the person that it designates as the Agent in the Medical Power of Attorney. Copies are okay to give to hospitals. Just saying you have them is not enough.
- Texas Directive to Physicians and Surrogates, (also known as living will) communicates the individual’s wishes about medical treatment when they are unable to make your wishes known because of illness and/or injury
- Medical Power of Attorney Except to the extent you state otherwise, this document gives the person you name as your agent the authority to make any and all health care decisions for you in accordance with your wishes, including your religious and moral beliefs, when you are no longer capable of making them yourself.
- List of current medications. Templates and logs as well as other information.
- Medical insurance card
- Picture ID (most commonly Driver’s License)
- Name and contact number of all of their physicians
Your documents help staff when your family member comes to the hospital and ensures accurate information is in the records. Realize each time medical information is transferred, the possibility for error increases. When going from the emergency room to a regular bed, coming from a nursing home to the hospital, whatever the route, verify each time that the medical record is correct.
Build relationships with doctors, nurses, techs, and even housekeeping staff who clean the hospital room.
Build collaborative relationships with nursing and other hospital staff, becoming allies focused on the best care for your care receiver. Ensure forms, lists, and other information about your care receiver are up to date. Ask or confirm other family members or friends as your back-up caregiver who can be with your loved one and an advocate.
Ambulance Services
Does the patient’s insurance pay for an ambulance? Can you buy ambulance insurance from your local provider? Many local ambulance services offer plans as low as $69 per year for the entire household.
Also note – Medicare will only cover ambulance services to the nearest appropriate medical facility that’s able to give you the care you need.
Emergency Rooms are often filled with patients. Patients brought in by ambulance are taken back to a treatment area. Some families chose to bring their loved one to the hospital; these patients are checked in with other patients presenting at the emergency room. Medical staff triage patients, prioritizing them by assessing the need for care.
- Always send a printed list of medications. If paramedics take a loved one to an emergency room and you are not with the patient.
- Watch that the ER staff correctly enters the patient’s medications, takes your copies of HIPAA forms, and directives for care, Directive to Physicians and Surrogates, “living will,” and medical power of attorney.
- Watch the electronic vital sign monitor, registering heart rate, blood pressure, blood oxygenation, respiration and temperature. If you have concerns, ask staff that may be around or use the call button, but only if you are concerned that they are life-threatening displays. Be persistent.
- If you do not have the Directive to Physicians and Surrogates, hospitals have copies if your care receiver is willing to sign one. Help your loved one understand that signing this ensures that their wishes are honored if they are unable to make decisions, such as surgery or other procedures. A Medical Power of Attorney lists a patient’s wishes in more detail than the Directive to Physicians and Surrogates.
- Be assertive and take an active role. Let hospital staff do their job but ask questions and expect answers. Understand that the answers may be that they need more time for testing to be done or treatment to begin.
- If a call button is not answered or staff does not respond within five to ten minutes, go to the nurse’s station and ask for an update or for someone to come to the room as soon as they can. Be firm but not aggressive.
Regardless of COVID restrictions, it will help your family member if hospital staff understand that the person you care for is limited due to illness, especially the non-medical needs of ACLs, activities of daily living. These activities include bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating. Hopefully, those needs will be assessed soon after admission, but it may benefit your family member and hospital staff if they know that from the beginning of the stay. Although generally used by professionals, use this Katz Index of Independence in Activities of Daily Living to at least help you know what to tell hospital staff.
The goal of hospitals is to provide the best possible care and help return the patient home or to a rehab facility as soon as possible. However, short staffing, a lack of training or both may require family caregivers to be more involved and even ‘hands on’ than they expect.
Ask other family members or even friends of your loved one to help you by being with the person in the hospital. In this stressful, sometimes crisis situation, having other family members tell you that they are too busy is not a good enough reason. You may have to be firm, offer them a time to visit, and explain how often and for how long that their mother, dad, or other family member may need them. You may have to tell them that you, too, are busy but you need them because you cannot be at the hospital all the time, are already exhausted, their loved one needs to know that they are there, and that you need them.
ICU (Intensive Care Unit)
When a patient is transferred to ICU, and the nurse reviews medications, be certain to mention all of them or refer to the list that should be in the patient’s chart. Offer them a copy of your list. Do not assume that they will administer every medication that is on the list, especially if it has not been discussed with the attending doctor. If they don’t administer what the person usually takes, ask for clarification from the assigned nurse or from the physician about what is being administered.
Regular hospital room
Take time to get to know the treatment staff and routines. Generally, a hospitalist is the doctor providing care for patients at a hospital, conferring with the referring physician, as needed. The nursing staff are the backbone of care, and it is essential to build positive relationships and partnerships with them.
Many hospitals will be grateful for your ongoing presence, as it can make their job easier. Help the staff understand your loved one’s preferences, limits, and capabilities. Be direct about the person’s abilities and limitations and identify any specific needs.
- “Dad will try to remove the IV, so please put extra tape over the needle.”
- “My uncle likes cranberry juice rather than apple juice.”
- “Mom will need to eat more than applesauce before she takes her meds.”
Most hospitals post the name of nurses, aides and others providing care on a whiteboard, changing the names with every shift. Match names of providers with who is listed on the board. Question if it appears the board may need to be updated. It is not unusual that during weekends, interns or physician assistants may see patients instead of the primary doctor.
The hospital provides care 24 hours a day, so know what the rules are about visiting and staying overnight. If needed, have the doctor write an order that allows you to have someone with the patient at all times. Can close friends help by staying with your family member? Make sure that whoever is staying with your loved one is listed on the HIPAA release form. Authorization To Disclose Protected Health Information. Otherwise, nursing staff and physicians are limited in what they can talk about. Sometimes these completed forms are part of the medical record provided by the referring physician. Note: Some families have to hire a private duty caregiver to cover the night shift, especially for them, when enough family members are not available, costing up to $75 and hour or more.
Nursing staff need to know if your family member has Alzheimer’s disease or other dementia, which means they are confused or do not know where they are or what is happening to them. Changes are difficult for people with dementia and going to the hospital may stress them more.
Every common hospital routine such as drawing blood, hooking up an IV, going to the bathroom, or being transferred for an X-ray is stressful. Your care receiver may argue with you or hospital staff and display inappropriate behavior.
Toileting is a challenge in the hospital, as there may be a catheter or an IV that involves special care. Pulling out an IV, getting out of bed with a catheter inserted, or refusal to cooperate with treatment may create additional medical problems. These routines are especially bewildering to the person with dementia and may result in anxiety driven behavior. These are the situations when a family caregiver is most needed.
Keep a log of dates and times that you have interactions with the physicians, nurses, and other medical staff about medications, treatment, and procedures you do not understand. This record can be especially helpful if more than one family member is staying with the patient. If you are fortunate enough to have others helping you as a patient advocate, be sure to leave the log and other important documents as well as doctors’ names and contact information with them.
Take notes with each doctor visit, as you may need to coordinate issues among various specialists. This is a critical aspect of the caregiver-advocate role. Keep track of questions as they arise and have your notes available when the doctor arrives, which may be at 7 a.m. or 10 p.m. or anytime in between. Do not assume that doctors are talking directly with one another, although they may.
- Be assertive and take an active role. Let hospital staff do their job but ask questions and expect answers. Understand that the answers may be that they need more time for testing to be done or treatment to begin.
- If a call button is not answered or staff does not respond within five to ten minutes, go to the nurse’s station and ask for an update or for someone to come to the room as soon as they can.
- Ask that staff to slow down what they are telling the patient or you.
- Ask that nursing staff to tell the patient and you the name and purpose of medications given orally or through IV.
- Encourage staff to talk directly to the patient, unless the person is incapable of understanding what is said due to dementia, hearing loss, or other limitation.
- Ask to talk to the physician if you or your care receiver does not understand treatment.
Lab work with blood draws or tests such as CT or x-rays are routine in hospitals. Most hospitals have procedures to make sure that a technician coming into the hospital room identifies themselves and what procedures they are there to do or where they are transporting the patient. It is okay for you to question a test that seems unusual for your care receiver. Use tact and ask questions, avoiding a demanding or argumentative attitude. Be assertive without being aggressive.
Personalize and manage the hospital environment.
Routine and familiar surroundings are helpful to anyone, especially patients who have cognitive (thinking) and memory problems due to strokes or dementia. In most hospitals, private rooms are the norm. Whenever possible, ask for a private room. Look for ways to personalize the space and provide comfort to your loved one. Bring a favorite coverlet or pillow, tape large family or travel photos on the wall or cabinet. Ask if you may provide a drink or food that your patient especially likes.
With hospitalization, families may find an outpouring of concern, which may result in a lot of visitors. Given the already confusing surroundings, experts recommend limiting visitors. Let people know that your loved one will rest and heal best with quiet and calm.
Stay prepared and organized yourself for possible overnight stays. Pack your bag with maintenance and comfort items, which may include: dollar bills and change for the vending machines, your medications, change of clothes, toothbrush and toothpaste, reading material, comfortable pillow, water, and snacks. Remember also that hospitals frequently have policies about cell phones and may limit use to areas where they will not interfere with equipment.
Keeping family and friends up to date
One challenge for caregivers, adding to their stress, is keeping family and friends informed about the treatment and progress of your loved one. Fear and not knowing what to do or say often keep other family and friends from offering their help or responding to your requests for help. Communication not only keeps them informed but involved in care because they know what is happening. It may be more likely that you can get help from other family if they know what is going on with your loved one.
Instead of having to make multiple calls or send text messages, have a way to inform a group of people at one time.
- Creating an email or texting group of family and friends,
- Use the Caring Bridge, a free online service where the caregiver can provide information to those who subscribe. The Caring Bridge mission states build bridges of care and communication, providing love and support on a health journey. The site is supported by donors
Self-Care
Self-care and stress management tools are essential for a caregiver with a loved one in the hospital. Use tools you have already learned or take this time to learn some new tools.
- Deep breathing is the fastest and easiest way to relax, regardless of where you are.
- Progressive relaxation added to deep breathing, by tensing and releasing muscle groups.
- Mindfulness tools, such as focusing on something in the room and really be aware of it: what it is, color, touch it, and other ways to use your senses in the present moment.
- On this website, search self-care and stress management for blogs and other caregiver information, including these posts:
Wishing you all the best in your important role as family caregiver, especially as you navigate a hospital. You CAN do this!
Later on, please share what you learned with use. Email caregiver@att.net.
Written and Edited by Zanda Hilger, including these Sources:
- In the Hospital – Advice from Other Caregivers
- Cancer and Caregiving in the hospital
- Hospital and Dementia by Sandra O’Connell, Caregiver.com
Related articles
- ER Visit: A Daughter’s 12 Hour Ordeal
- Hospitalization and Dementia: The Role of the Family Caregiver
- How to Manage Their Healthcare
- Organizing for Caregivers
- The Hospital Stay
- Slow Medicine
We hope this information is helpful to you in the important work you do as a family caregiver.
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