Quick Links
When the Patient Arrives at the Hospital
When the Patient is Discharged
If Rehabilitation is Recommended
When Returning Home or to Assisted Living/Senior Residence
If Returning to a Family Members Home
For additional information on healthcare management, Insurance or Legal/Financial Planning see Resources for Caregivers
When the Patient Arrives at the Hospital
Pack your patience. Whether your loved one suffers from dementia or not, visits to the hospital are often lengthy and uncomfortable. Make it easier with the following tips:
***TIP: Ask if the hospital is a NICHE Member organization - NICHE (Nurses Improving Care for Health-system Elders) is a national program that helps hospitals and healthcare organizations improve the care of older adults. NICHE member organizations gain access to resources, tools, and support to improve care for older adults, including evidence-based practices, resources and guidance from experienced NICHE nurses. For a list of NICHE members, look here.
Be prepared - Develop a two-part emergency department visit plan that is ready long before it’s necessary. 1) Ensure you understand Chronic Health Issues and have discussed Goals of Care; and 2) Have at the ready a folder including medical issues, surgery history, medications, primary care, pharmacy and specialists’ contact (including after-hours numbers), advanced directives, and other allergy or helpful emergency care insights for you or your loved one. If the patient has an activated health care power of attorney (HC-POA) or MOLST, health insurance card or prescription card have these documents ready. Use long waiting time to make sure you have access to this information, if you don't already.
Be patient - It takes a couple of hours for diagnostic testing, such as blood tests, X-rays, and CT scans, and any interventions, such as medications. It is important to be prepared for a lengthy visit. Bring reading glasses, cell phones, hearing aids, warm comfortable clothes, reading materials, headphones and music, or a device on which to watch television programs. Always ask staff before eating or drinking anything or taking medications to ensure it will not interfere with any planned tests or treatments. Let the emergency department staff know if you need something. They don’t want patients getting dehydrated or missing a medication, either.
“People with dementia are twice as likely to seek emergency care compared to older adults who don’t have dementia. The emergency department can be a loud, bright, fast-paced environment, which can amplify cognitive issues and present communication challenges for someone with dementia. But there are steps you can take to improve an emergency department visit for someone with Alzheimer’s disease or another cause of dementia.” - : 6 Tips for Emergency Visits with Dementia Visitors and Their Caregivers, See more.
Don’t hurry back home - The leading causes of emergency room visits are falls and/or changes in appetite and behavior that may be indicative of severe dehydration, urinary track infections, congestive heart failure and/or TIAs (Transient Ischemic Attack). Congestive heart failure can also present as overnight weight gain or breathing difficulties. TIAs, or mini-strokes, refer to a temporary interruption of blood flow to the brain, causing stroke-like symptoms that typically resolve quickly.
Patients may have difficulty speaking or understanding others or weakness/numbness in the face, arm, or leg.
***TIP - Although all of the above may be resolved by the time a doctor is seen in the emergency room, they can be precursors to larger events and should not be minimized. Make sure to notify primary doctors right away and monitor loved ones over the next few days and hours.
For next time.... Know what to watch for and monitor suspected health concerns. Stay on top of your concerns with regular check-ins with primary care physicians. If your loved one has dementia, familiarize yourself with the various stages of the disease and its process so that when medical issues arise or changes occur, you know what to expect and how to approach them. An example of this might be behavioral changes or difficulty swallowing, eating, and drinking. Don’t ignore the warning signs. Older adults, particularly people with dementia or chronic illnesses, can get sick quickly.
When the Patient is Admitted to the Hospital
Be an Advocate. Once admitted to the hospital, the most important role of a caregiver is to serve as attendant and advocate for their loved one. This means asking questions, being persistent, and understanding WHY treatments and services are being recommended as part of the care plan. (See more advice.) When possible, have more than one person present to take notes and listen to what the medical professionals are sharing. In addition, the following are steps to consider:
“I found out about my father being in the hospital two days after he was admitted. By then he was so aggressive they had to restrain him so he wouldn’t pull out his IV or hurt someone. Being able to speak with the nurse about his anxieties would have made a world of difference in managing his hospital delusions. As soon as you can, talk with the nurse on duty and let them know what you do about how your loved one experiences hallucinations or hospital delirium. ” - Caregiver
Limit or avoid hospital delirium and hallucinations -Also called “sundowning”, managing hospital delirium requires a collaborative effort from healthcare professionals, caregivers, and the patient.
Patients experiencing sundowning may have difficulty remembering names, dates, or locations. They may see or hear individuals not present, act out of character or ask for relatives long passed. They may be agitated, nervous, acting out or being unusually withdrawn. These patients are at a greater risk for long hospital stays, functional decline, risk of complications, and mortality. Once experienced, they tend to experience delusions with greater severity and regularity during future hospital stays. Here are some practical steps as you advocate for your confused loved one:
Mobility & UTIs - If your loved one has been admitted due to falls or weakness when standing and suffers from incontinence, it is possible that the care team may recommend the use of a catheter rather than a portable toilet. Using a urinary catheter increases the risk of developing a urinary tract infection (UTI). About 75% of UTIs developed in hospitals are associated with a urinary catheter, especially when they are left in place, rather than used periodically. If your loved one presents as delusional, this can be an indication that they have developed an infection, been exposed to Covid, the Flu or some other illness while in the hospital. NOTE: If the patient is placed on IV vs oral antibiotics, there may be a delay in being discharged from the hospital. Discuss medical treatment if an infection is determined.
Dementia & Anesthesia - While general anesthesia doesn't directly cause dementia, it can potentially worsen existing dementia symptoms in some individuals. To limit the impacts of anesthesia on dementia, the most important steps are to consult with a healthcare professional before surgery, discuss the patient's specific cognitive status, and opt for the least invasive anesthetic options like regional anesthesia when possible, while avoiding medications that can worsen cognitive function, particularly benzodiazepines and anticholinergics; additionally, meticulous post-operative care with close monitoring and cognitive stimulation can help manage potential cognitive decline.
When the Patient is Discharged
When leaving a hospital after care, expect a discharge plan, follow-up care instructions, and potentially referrals to other facilities or services, all coordinated by a discharge planner or case manager. In the event that the patient is not mobile, transportation will also be coordinated by the same case manager or planner.
After seniors are discharged from a hospital or emergency stay, it's crucial to focus on their recovery and well-being at home. This includes understanding discharge instructions, seeking necessary support, and ensuring a safe and supportive environment. It's also important to monitor for any post-hospital complications and to gradually reintroduce routines to help them regain a sense of normalcy.
After a hospital stay, especially an ER visit, elderly individuals or their caregivers should immediately review their bills carefully for accuracy and contact the hospital's billing department to request an itemized bill and clarify any discrepancies. They should also appeal to their insurance company and explore financial assistance programs, negotiation options, and potentially explore prompt-pay discounts or payment plans.
If Rehabilitation is Recommended
In the event that your loved one may be unable to return to their former home without a stop at a rehabilitation residence, here are a few items to keep in mind:
Selecting a Rehab Facility
A few days prior to discharge the case manager will reach you to introduce themself. At this time, they will explain the physician's recommendations for treatments and what services will be required. The case manager is your advocate with Medicare and any supplemental insurance plan you may have and will explain what services are or are not covered by your insurance. If the patient needs to spend time at rehab, it is appropriate at this time to request a private room at a facility, especially if the patient presents with dementia or cognitive decline. Within a few days the planner or case manager will provide you with a list of available rehabilitation centers that have beds available for you. You will be given a window of time (about 48 hours) in which to decide a first, second and third choice selection.
***TIP - While rankings (Medicare.gov) are important to evaluate a rehab center, the most important qualification is its proximity to the caregiver who is most likely to visit. More than ever, the patient will need an advocate who can be present at the rehabilitation residence.
Arriving at the Rehab Residence
Be aware that rehab facilities are essentially nursing homes. So do not be surprised when you walk in the door, and they are not quite what you might expect a therapeutic residence to be. And if you arrive on the weekend, physical and occupational therapy services may not begin until the work week.
This is also yet another unfamiliar location. The patient who has had a long hospital stay will need to be bathed, groomed and checked for bed sores. Clothes and personal effects need to be brought in, and need to be monitored as they are washed and returned by staff. Sleeping patterns, eating and behavior will once again be off kilter. Sundowning is extremely prevalent and if mobile, patients are known to wander. Expect to spend extra time with your loved one these first few days to help them get acclimated and comfortable. Get to know the staff that will be with them on a regular basis. They may ask about patients' interests, behaviors and past level of cognitive abilities to assess what is injury induced vs patient normative.
“A note about guilt - You will feel guilt as a caregiver, especially if you are unable to care for your loved one in your home. You may project that guilt into criticism of the quality of your loved one's care residence - regardless how excellent it is. The food is awful, the nurses not attentive, the facilities unkept, etc. Be aware of this. Take a deep breath. Advocate as much as you can, while recognizing the limitations of the people who are providing care for your loved one 24/7.” - Caregiver from a Distance
Leaving the Rehab Residence
Typically Medicare coverage for rehab residences lasts about 21 days or 3 weeks. (Usually stay length is determined shortly after arrival.) After that time, patients are required to pay out of pocket per day. Many people will be involved with the discharge from rehabilitation including a Medicare representative.
Make sure to ask exactly what home care services will and won’t be covered post illness once your loved one returns home. This may require getting written assessment records from the rehab Physical Therapy/Occupational Therapy (PT/OT) staff prior to discharge or upon their arrival back home. Typically, senior or assisted living residences will have partnerships with companies for ongoing pt / ot providers on site, as well as home-care nursing, but make sure to ask for multiple referrals before leaving the rehab center.
When the Patient Returns Home/ Assisted Living
Regardless of where your patient is returning from or to, accommodations may need to be made to increase services and care to ensure a smooth transition back home and return mobility and agility. Several services are available and are covered by Medicare. Do as much research as possible before your loved one has returned.
For temporary support services consider reaching out to the Case Worker at Jenks Senior Center in Winchester or Minuteman Senior Services.
For more information and advice about home care services and how to select care professionals, go to the Aging in Place section.
Winchester Hospital offers traditional inpatient care, but also incorporates a Hospital at Home program to deliver hospital-level care in the comfort of the patient's home. This program allows some patients with acute illnesses or conditions to receive treatment and monitoring in their homes, rather than in a traditional hospital setting. Other hospitals around the country are also beginning to utilize this approach. Ask your local hospital if they have a similar program.
When Returning to a Family Member's Home
For more information on this topic, go to Housing section in
Resources for Caregivers
Crisis Intervention & Hotlines
911 Silent Call Procedure
The silent call procedure helps people with certain disabilities or concerns to communicate their needs. This method works using a touch-tone, landline telephone, or a cell phone. Here’s how to use it:
If a Massachusetts dispatcher answers a 911 call and it is silent, they will go through these steps to see if there is a response. You do not have to remember the procedure; they will ask you while on the telephone.
Crisis & Emergency Hotlines
Elder Abuse Hotline - National - (800) 922-2275 Mass. - (855) 530-1796, website
Massachusetts: Disabled Persons Protection Commission - (800) 426-9009 - TTY - (888) 822-0350, website
Mobile Mental Health Crisis Services - (800)540-5806
National Domestic Violence Hotline - (800)-799-7233 - TTY - (877)-521-2601, website
National Substance Abuse and Mental Health Service Administration Helpline - (800) 662-4357 - TTY: 1 (800) 487-4889, website
National Sexual Assault Hotline - (800) 656 4673 [24/7 hotline], website
Suicide Hotlines (Massachusetts) - Dial “988” Suicide and Crisis Lifeline - Boston: (617) 247-0220, website
Poison Control - Phone: 1 (800) 222-1222, website
Veterans Crisis Line - Phone: 1(800) 273-8255 - TTY: 1 (800) 799-4889, website
Winchester Fire Department 32 Mount Vernon St. - (781) 729-1802, website
Winchester Hospital 41 Highland Ave - (781) 729-9000
Winchester Police 30 Mt Vernon St - (781) 729-1214, website
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