Possible subpage for family caregiver work on UHF site: 8 brief writeups, with links to guides, replacing the "transition tool" of the Next Step in Care website. No actual links put in yet, but here's the descriptive text for each of the transitons; the titles of all guides listed would be hyperlinks to the pdfs in English.
Going to the hospital is a stressful experience, whether the admission is planned or an emergency, and whether you have done this many times before with your family member or this is the first time. Just getting to the hospital may involve calling an ambulance, making last-minute arrangements, and, of course, managing your own and your family member’s anxiety. Whatever the circumstances, you will be less overwhelmed if you understand the process and have planned ahead for an admission or an emergency.
The guides in this section will help you through the admission process and plan for your family member’s discharge. They can also help make sure you and your family member have what you need on the day of discharge.
Knowing what to expect from a hospital admission process and the actual stay can help you and your family member. The Hospital Admission guide will provide you with important information about the process. It is also a good idea to be familiar with rules and regulations. All hospitals are required to follow HIPAA rules on sharing information. It is important that you understand your rights as a family caregiver under the HIPAA law. Our guide, HIPAA: Questions and Answers for Family Caregivers can help you with that.
If your family member has an Advance Directive form filled out, it’s important that you bring it with you to the hospital. If not, now is the time to complete one. The guide to Advance Directives can help you in the process.
Having your family member’s medical information centralized in one place, can ease the process in the hospital whether it’s an emergency or not. Your Family Member’s Personal Health Record and the Medication Management Form can help you be prepared to answer the various questions you will be asked in the hospital.
While in the hospital it is important to start planning for discharge as soon as possible. The Hospital-to-Home Discharge Guide will give you the basic information about the discharge process and get you started asking questions. What Do I Need as a Family Caregiver is a form that can help you understand what you will need in order to help your family member after the discharge. During a hospitalization medications often change; the guide to Medication Management and the Medication Management Form will help you understand the process of medication reconciliation so that you know what has been changed and what remains the same.
Going Home: What You Need to Know is a simple checklist that organizes the various tasks and supplies you will need. This is a lot to think about, but these guides will help you organize this information and plan ahead.
If your family member is referred for home care services, be sure to read Home Care: A Family Member’s Guide so that you have a realistic expectation of what services are likely to be provided.
If you family member is referred for rehabilitation services, be sure to read about Short-Term Rehab Services in an Inpatient Setting.
Finally, we recommend that you read about Emergency Room (ER) Visits which will help you limit these visits to real emergencies and help you understand the way care is provided in this setting.
Starting home care often means significant changes for both you and your family member. It's another person, or people, in the home. It's care duties that your family member was used to you doing, or doing alone, now being done by another person - often a stranger. It's work that you as a caregiver may have taken pride in (or disliked) that now is in the hands of someone else.
Home Care: A Family Caregiver's Guide outlines many of these changes, from types of home care services, kinds of home care staff, payment, and how this can affect you as a family caregiver. The Family Caregiver's Planner for Care at Home can help you keep track of who is coming, when, and what their roles are in care.
Having a smooth relationship with the people providing home care services can be essential for proper care and safety, as well as peace of mind. The guide Working with Home Health Aides provides tips on understanding the aide's duties and restriction can be, communicating clearly with each other, and being clear regarding the working relationship and expectations.
And what what does it mean for you and your family member when home care services stop? The guide When Home Care Ends discusses the impact of the close of home care services so you can be prepared and have plans in place.
“Good news,” says the doctor or nurse. “You can take your mother home tomorrow.” As glad as you are to hear that your family member is well enough to leave the hospital, you might not feel ready for this move. Even if you have done this many times before, each transition from hospital to home is a little different. Your family member may need more assistance or have new medications, or your own ability to provide care may have changed.
It is important that you understand and be part of the discharge planning process. The guides in this section will help you. You can read them in any order but here is what we suggest. You can link on any of the guides here or from the menu on the right.
The Hospital-to-Home Discharge Guide will give you basic information about the discharge process and get you started asking questions. What Do I Need as a Family Caregiver? is a form that can help you understand what you will need in order to help your family member after this discharge. During a hospitalization medications often change; A guide to Medication Management will help you understand the process of medication reconciliation so that you know what has been changed and what remains the same. Going Home: What You Need to Know is a simple checklist that organizes the various tasks and supplies you will need. This is a lot to think about, but these guides will help you organize this information and plan ahead.
If your family member is referred for home care services, be sure to read Home Care: A Family Member’s Guide so that you have a realistic expectation of what services are likely to be provided.
While your family member was hospitalized, you had information about HIPAA and Advance Directives. It’s a good idea to review these. While all home care agencies are required to follow HIPAA rules on sharing information, each agency may have its own privacy rules and requirements. Our guide, HIPAA: Questions and Answers for Family Caregivers can help you with that.
Even if your family member signed an advance directive in the hospital or before hospitalization, you should review the document under less stressful circumstances. And if no advance directive was signed, now is the time to do it. The guide to Advance Directives can help you in the process.
Now that you are at home, it’s important that you review What Do I Need as a Family Caregiver? and ask the home care nurse to help you fill or update this form. A companion piece is the Family Caregiver’s Planner for Care at Home, which will give you a quick way to see who is coming when, and what tasks you need to do yourself. Also important here is the Medication Management Form, which lets you keep track of your family member’s prescriptions and over-the-counter medications.
Home care is likely to end before you feel completely ready to take over. When Home Care Ends alerts you to the plans you need to make.
Finally,we recommend that you read Emergency Room (ER) Visits to help you limit these visits to real emergencies and to help you understand the way care is provided in this setting.
Sometimes after a hospital stay patients may need additional time to recover before they can go back home. For example, patients who have suffered unanticipated events—strokes, fractures, traumatic brain injuries, or heart attacks–or scheduled surgeries like hip replacement–may be referred for rehabilitation or “rehab” services, where they can receive therapy to help them get stronger, to try to regain abilities they may have lost, or to help maintain function. Rehabilitation services are provided in various settings, such as skilled nursing facilities (SNF), inpatient rehabilitation facilities, nursing homes, rehab units within hospitals, and other specialized settings.
Many family caregivers and patients are unfamiliar with rehab, but as a family caregiver you are an important member of your family member’s care team. Often when patients are discharged from hospital to rehabilitation, most of the communication occurs between the hospital and the rehabilitation services medical team, yet it is important that you understand your family member’s options and plan of care. Once you are informed that the next step might be rehab, we recommend you read our guide “Short-Term Rehab Services in an Inpatient Setting”. This will provide you with an overview of rehab options and the rehab process.
Even though the hospital will be sending your family member’s medical information and medication regimen to the rehab facility, we recommend that you ask the medical team to help you complete a Medication Management Form with the list of medication you family member will need. You can then use it to compare with the medications provided once at the rehab facility.
While your family member was hospitalized you had probably received information about HIPAA. It’s a good idea to review it. While all rehab facilities are required to follow HIPAA rules on sharing information, each facility has its own privacy rules and requirements. It is important that you understand your rights under the HIPPA law. Our guide, HIPAA: Questions and Answers for Family Caregivers, can help you with that.
If your family member does not have any form of advance directives, such as a health care proxy, it is important that one be completed. The guide to Advance Directives can help you in the process.
While it might be difficult to think about discharge at an early point in the rehabilitation process, it is important to start planning for it as soon as possible. Our guide on Short Term Rehab Services in an Inpatient Setting will provide you information about the discharge process from rehab.
What Do I Need as a Family Caregiver? can help you assess and understand what supports or training you will need in order to help your family member after discharge from rehab; and Going Home: What You Need to Know is a simple checklist that can help you get organized. It is a place to note the various tasks and supplies you will need to help your family member at home. We recommend that you review and complete the checklist with a member of the medical team before discharge from rehab.
A guide to Medication Management will help you understand the process of medication reconciliation so that you know how to manage your family member’s medications, and can prepare for any changes in medications following discharge. We also recommend that you update the list of your family member’s medications before discharge. The Medication Management Form can help with that important task.
If your family member is referred for home health care services following discharge, or if you decided to privately hire a home care agency, we recommend that you review Home Care: A Family Caregiver's Guide.
Finally, we recommend that you read about Emergency Room (ER) Visits to help you limit these visits following discharge and help you understand the way care is provided in this setting.
We go to the hospital, thinking that the miracles of modern medicine will make us healthy again. Sometimes this happens. Many times, hospitalization is the start of a long road to recovery. Other times, hospitalization means that the end of life is not far away.
One of the options near the end of life is hospice. Hospice can have a huge impact on you, the family caregiver. The Guide to Hospice and Palliative Care can help you to understand the changes and to plan ahead. This guide includes hospice services, what makes hospice different from palliative care, and payment.
There are many misconceptions about hospice and what it means for both your family member and for you. We hope this guide makes hospice easier to understand.
For patients who have been independent until very recently, the transition to end-of-life care can be a shock - and for you, too. Up until this crisis, you may have been a spouse, a child, or a friend of the person needing care, and not a "family caregiver." The guide The First Step in Care: Becoming a Family Caregiver can assist you in making sense of this change, including what it can mean for you when caregiving ends.
A stay at a rehab unit, whether in a nursing home or a hospital, is always temporary and it is a good idea to start planning for discharge as soon as possible. Your family member might be well enough to leave rehab, but you might not feel ready for this move. The transition from rehab to home can be difficult for both you and your family member and preparation is key. Your family member may need more assistance or have new medications, or your own ability to provide care may have changed.
It is important that you understand and be part of the discharge planning process. The guides in this section will help you. You can read them in any order but here is what we suggest. You can link on any of the guides here or from the menu on the right.
You might want to start by reviewing the guide to Short-Term Rehab Services in an Inpatient Setting. It will give you basic information about the discharge process and get you started asking questions. What Do I Need as a Family Caregiver? can help you assess and understand what supports or training you will need in order to help your family member after discharge from rehab.
During a stay in a rehab unit medications often change; our guide to Medication Management will help you understand the process of medication reconciliation so that you know what has been changed and what remains the same. Also important here is the Medication Management Form which lets you keep track of your family member’s prescriptions and over-the-counter medications.
Going Home: What You Need to Know is a simple checklist that can help you get organized. It is a place to note the various tasks and supplies you will need to help your family member at home. We recommend that you review and complete the checklist with a member of the medical team before discharge from rehab.
If your family member is referred for home care services, be sure to read Home Care: A Family Caregiver’s Guide so that you have a realistic expectation of what services are likely to be provided.
In preparation for home care, it’s important that you review What Do I Need as a Family Caregiver? and ask the home care nurse to help you fill or update this form. A companion piece is A Family Caregiver’s Planner for Care at Home, which will give you a quick way to see who is coming when, and what tasks you need to do yourself, and what will the home care staff be providing. Home care is likely to end before you feel completely ready to take over. Our guide When Home Care Ends alerts you to the plans you need to make.
Once at home, you may also want to review information about HIPAA and Advance Directives. While all home care agencies are required to follow HIPAA rules on sharing information, each agency may have its own privacy rules and requirements. It is important that you understand your rights as a family caregiver under the HIPAA law. Our guide, HIPAA: Questions and Answers for Family Caregivers can help you.
And, even if your family member signed an advance directive in the hospital or before hospitalization, you should review the document under less stressful circumstances. The guide to Advance Directives can help you understand the different kinds of advance directives and the process for preparing them. This is also a chance to make sure that any specific advance directives, such as do not resuscitate (DNR) orders are prepared and on file for the current care setting. If no advance directive was signed, now is the time to do it.
Finally, we recommend that you read Emergency Room (ER) Visits to help you limit these visits following discharge and to help you understand the way care is provided in this setting.
Most patients and their family caregivers expect a stay in a nursing home rehabilitation (rehab) unit to be a short stop on the way home. But sometimes going home is not possible. For example, if your mother was sent to rehab from a hospital after a stroke because she needed to relearn to walk and feed herself, she might not be able to be on her own even after several weeks of rehab.
Like other transitions (moves), moving from a short stay in a rehab setting to a long-stay unit in the same facility or another one, can be difficult and confusing. When Short Term Rehab Turns into a Long-Term Stay gives you information about the process and addresses some of the most common questions.
Remember that even when your family member moves to a long-term care setting, you are still an important member of the team. Your continued involvement will be important for your family member’s well-being. The guide has information about what you can do for your family member during and after the transition.
The transition from "short-term rehab" to hospice is not unusual. For a variety of reasons, your family member may go to short-term (or "subacute") rehabilitation, expecting to get better and go home. Unfortunately, this doesn't always happen. Your family member may not be strong enough to fully benefit from rehabilitation, or illnesses may have progressed. Sometimes, the doctors in the hospital cannot tell if a patient's health is going to improve or get worse until rehab is tried. Talk with the doctor at the rehab and make sure you have a good understanding of your family member's diagnoses and prognoses (the expected course of your family member's illnesses).
Hospice isn't for everyone. It's a choice, not a requirement. The Guide to Hospice and Palliative Care can help you understand what hospice could mean for your family member, and what it could mean for you. This guide can also be a good tool for the entire family to use when talking about hospice - this way everyone has the same information and can make an informed decision.
The guides to advance directives and to rehabilitation can also be useful during these conversations.