What do you do when your loved one goes to the hospital? If you are caring for someone with dementia, you probably worry about the hospital’s understanding of the illness and the ways your loved one needs to be cared for. If there is an acute episode, for example a stroke, broken hip or pneumonia, you worry about your loved one getting better, and what the needs will be when he or she leaves the hospital.
Often, caregivers spend many hours at the hospital, overseeing care and offering support. By the time your loved one is discharged from the hospital, you might be more tired than ever—and you might be scared that you won’t know how to provide care now.
So, what happens when the hospital stay is over? We’ve all heard about the late Friday afternoon discharge from the hospital. You have been there every day, talking to the nurses about your loved one’s condition and needs. Suddenly, you are told he or she is going home this afternoon. There has been no discussion about what the home care needs are and what you need to know in order to care for your loved one.
Perhaps you’ve met with a discharge planner, who has told you a little bit or arranged for your loved one to go to a rehabilitation facility for physical therapy and to get his or her strength back. Or you have been told to go look at nursing homes and let the discharge planner know what you’ve decided. You may have been told your loved one needs 24-hour care, but no one has told you how to find that care or what it will cost. You may not even know how to get your loved one home from the hospital—who will pay for an ambulance if it’s needed, how will he or she get up the stairs in the house, where will he or she sleep if the bedrooms or bathrooms are upstairs?
Several governmental agencies and research projects have examined the discharge planning process, the fragmentation of services and what caregivers need to know to succeed in navigating the care system. All agree that changes are needed to make discharge planning more successful.
It has been well documented that patients are being discharged from the hospital “quicker and sicker” than in the past. This also means that patients have more complex care needs and may be dealing with multiple illnesses and disabilities. Nurse discharge planners may tell you about medical situations, and social work discharge planners will tell you about community organizations, but in too many cases, no one is overseeing the information and the referrals you are given or how to access and coordinate the help you need.
If your loved one is discharged to a rehabilitation facility, the discharge planner at the hospital will assume that someone at the facility will answer your questions. Unfortunately, the discharge planners at the facility may not be trained to respond with the information you need. There is no care coordination across the discharge process, e.g., from hospital to facility to home care. You are left stressed, confused and feeling helpless.
What can you do under these circumstances? First, it is important to be an advocate not only for the patient but also for yourself. Be aware that there is an appeal process available if you feel your loved one is being discharged too soon. (See the Resources section at the end of this article.) Write down your questions and make sure you get answers before taking your loved one home.
The first set of questions is about the illness:
What is it and what should you expect in terms of recovery?
What should you watch out for?
Will you get home care and will a nurse or therapist come to your home to see that the patient is doing ok?
How do you get help—for advice about care, danger signs, a phone number for someone to talk to, follow-up medical appointments?
Have you been given information either verbally or in writing that you understand and can refer to?
The second set of questions is about treatment and care:
What medicine should be taken and when?
What side effects you should be looking for; how do you help your loved one transfer from bed or chair to standing?
What do you do if he or she falls (particularly when you are holding him/her)?
What medical equipment does your loved one need, e.g., a hospital bed or commode or walker, and how do you use them?
Will someone come to your home and do an assessment to see if you need home modifications to care for your loved one in his or her new condition?
Third, where do you find help in the community:
What agencies are available to help you, with, say, transportation or meals?
What is adult day care and how do you find out about it?
What public benefits are you eligible for, such as In-Home Supportive Services?
Where do you start to look for such care (make sure you are given specific referrals and not just a resource guide which can be overwhelming)?
Whom can you call to help with these referrals or if you have trouble connecting with an agency?
And finally, you need to have the discharge planner address your needs as a caregiver. This means that they should assess your ability to do the required tasks:
Have they trained you in transfer skills?
Do you know how to turn someone in bed so he or she doesn’t get a bedsore?
Do you know how to help someone swallow a pill or give an injection?
Does your loved one require help at night and if so, how will you get enough sleep?
What things are scary or uncomfortable for you to do, e.g., changing a diaper?
What medical conditions and limitations do you have that make providing this care difficult?
We know that if your health is compromised in caring for someone, he or she will return to the hospital or need nursing home placement sooner. It is important for you to say, “I cannot do that,” rather than to hurt yourself or your loved one trying to do something.
We often get calls from caregivers saying they don’t know where to start to get help or are confused by what the discharge planner has told them. Feel free to call your Caregiver Resource Center if you need guidance when your loved one is in the hospital and when the discharge plan is being made. And most important: don’t be afraid to be assertive in getting your concerns addressed before your loved one comes home.
For More Information
Center for Medicare Advocacy’s Tip Sheet for Beneficiaries: Hospital Discharge Planning
http://www.medcareadvocacy.org/CovAndApps_DisTips.Hosp.Bene.pdf
Medicare
(800) MEDICARE
http://www.medicare.gov
Medicare Rights Center
Medicare Home Health Eligibility, available at: http://www.medicarerights.org/maincontenthomehealtheligibility.html
A Family Caregiver’s Guide to Hospital Discharge Planning, published by the National Alliance for Caregiving and the United Hospital Fund of New York.
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