Going into the hospital is stressful for anyone. When it’s your loved one with Alzheimer’s disease, it can be especially challenging. But you can do some things to make it easier on everyone.
Before They’re Admitted
It’s important to understand why your loved one needs to be in the hospital. Ask what tests or procedures will be done and the risks and benefits of each. Find out how long your loved one is expected to stay.
Plan to stay overnight with them, or ask family members or friends to stay with them while you rest and take care of other things.
If possible, have advance directives in place like a living will and a designated durable power of attorney for healthcare. Bring these documents to the hospital and have them placed in your loved one’s medical record. Print an information page that gives nurses and doctors important details about your loved one.
Make a hospital bag. Put your loved one’s insurance cards, medical history, medication list, and advance directives in it. Add a few changes of clothes and any personal care items you need, along with some familiar items from home, like pictures or a blanket.
If possible, try to get a private room. This will help keep them from being disturbed, which could make them upset or confused. It will help if you can make their space seem familiar. Label the bathroom to help them find it. Place familiar pictures near the bed.
During Their Stay
While your loved one is in the hospital, it’s critical to watch for problems that may come up. Keep an eye out for:
Agitation and delirium: It’s common for someone with Alzheimer’s disease to get upset in the hospital. They may not understand why they’re in bed or why they have tubes and lines attached to them. They don’t know who the people are that go by and come in and out of their room.
They may also have delirium. This form of agitation and confusion can be linked to stress, dehydration, infections, and certain medications. It affects about half the people who have dementia and are hospitalized. Someone who has it may be suspicious or believe things that aren’t true. They may see or hear things that aren’t there and have other unusual behaviors. This can be scary for you as a caregiver, but remember: This isn’t how they feel about you or the care you give them. This is a function of their illness.
It’s easier to prevent delirium than to treat it. Make sure someone is with them 24/7. Bring their glasses and hearing aids to the hospital and see that they wear them. Make sure they sleep well at night. Remind them often of where they are and what time it is, and keep the window shades open during the day. Talk to them and try to keep their mind busy.
It will help the hospital staff if you tell them what you’ve learned about how best to work with your loved one. If you don’t want them to use physical restraints, let them know. Tell them right away if you think something is wrong. You know your loved one best. You’ll be able to tell if they’re delirious before the staff can.
Dehydration: Make sure your loved one gets plenty of fluids. Ask their doctor how much they should get each day. Certain issues can cause them to need more, like sweating, vomiting, fevers, or diarrhea. Someone who’s dehydrated may not pee for 8 hours or longer. When they do go, their pee may be dark yellow. Their eyes, nose, mouth, or tongue may be dry. Other signs include sunken eyes, a fast heart rate, inability to talk, confusion, and weakness. The more signs they have, the more likely it is that they’re dehydrated. If you notice any of these, let the doctor know right away.
Infections: Infections and fever are common with hospital stays. People with Alzheimer’s are most prone to lung infections (especially pneumonia), urinary tract infections (UTIs), skin infections, and blood infections (sepsis).
To prevent them, watch your loved one for signs of pain or discomfort. Make sure the staff regularly changes his or her position to protect against pressure ulcers. Talk with your doctor about how to keep your loved one from getting a urinary catheter. These tubes that carry urine from the bladder into a bag are the main risk factor for someone to get a UTI in the hospital. Wash your hands often to protect both yourself and your loved one. Make sure visitors and medical staff wash theirs, too.
Pain: It’s hard for people in the late stages of Alzheimer’s disease to let you know when they’re hurting. They may sigh, grunt, or grimace when you touch them. Sometimes they get upset or aggressive. They may sit or lie in strange positions or guard the part that hurts. If they can still talk, they may say things like “not right” or “tight” to describe it. If you think your loved one is in pain, talk to their doctor right away about pain medication or other possibilities, like massage or aromatherapy.
Wandering: It’s dangerous for your loved one to roam the hospital. It puts them at a higher risk of falls and injuries. It also causes stress and worry to others. Tell the staff if your loved one has wandered in the past. Discuss ways to keep them in their room during their stay.
But make sure that your loved one doesn’t stay in the bed or chair all day, because that will make them weaker and more likely to fall later. You can also:
- Ask if the hospital has electronic tracking tags available.
- Label the bathroom so your loved one can find it.
- Make sure they have non-slip foot coverings, such as socks with rubber tread, in case they do get up.
- Distract them with a snack or an activity when they try to wander.
- Make sure someone who knows the person is with them at all times.
- If it’s OK with their doctor, take them for walks often.
How to Communicate With Hospital Staff
Your loved one will have a dedicated team to care for them. If one of them uses terms or refers to new procedures that confuse you, don’t be shy about asking them to explain. Poor communication between families and staff members can be one of the most frustrating things about a hospital stay.
To help improve communication:
- Choose a main contact person for the staff to talk to. This can be you or another family member.
- Talk to a doctor each day about the plan and timetable for the hospital stay.
- Find out which nurse and staff person you should contact each day with questions.
- Remember that most doctors come by in the morning or late afternoon. Have your questions ready. Tell family members who want to talk to the doctor to be there at those times.
- Decide which questions you want to ask first. Understand that you may not get all of your questions answered at once.
- Take notes when you speak with a staff member.
- Ask for brochures or pamphlets about new procedures or treatments if you want to learn more.
- Get a contact phone number in case you have questions after your loved one gets home.
If You Won’t Be at the Hospital With Them
Use this time to take care of yourself, especially if you’ll be the main care provider after discharge. It’s normal for you to be tired. It takes a lot of time and energy to care for someone with Alzheimer’s. Fatigue from a lack of sleep, anxiety, and stress can leave you burned out and depressed.
Tell those closest to you how you feel. If family or friends offer to help, take them up on it. Let them know exactly what you need. Feeding your pets, fixing a meal, or getting your mail can be a big help to you and make them feel good, too. Friends and family members can also stay with your loved one so you can have some time away.
Hospital stays are sometimes shorter than expected. You’ll need a plan in case they come home early, so start thinking about it as soon as they’re admitted. They may still be recovering when they’re released. They could be discharged to their home and need only a little help from you. Or they might get to go home, but need help from a home health aide. But they could leave the hospital for a temporary rehabilitation facility like a nursing home. A nurse, social worker, or case manager employed by the hospital will help you plan this process.
Be honest about any limitations or specific desires you have about their care. Some nursing homes have special care units for people with dementia. You can talk to the discharge coordinator about this option while your loved one is still in the hospital.
To make the discharge safe and smooth, make a list of things that could go wrong and figure out ways to address them. For example, ask for a list of any changes to their medications. If there have been changes, make sure you understand the new medications and the side effects they could have. Check that you have the new prescriptions. You’ll also want to know if your loved one’s been diagnosed with any new illnesses. Make a list of the treatments they’ve had and any other treatments they need. Find out if there’s any new care you need to provide. Get a telephone number you can call at any time with questions. Lastly, make a follow-up appointment with their primary doctor.
Rehabilitation, which you may hear called rehab, is one discharge option after a hospital stay. It helps people recover and function their best after an illness or injury.
Sometimes rehab can take place in the home. But depending on the condition and other factors, your loved one may need to stay at a rehab facility, such as a nursing home. Think carefully about which one to use. A discharge coordinator will provide you with a list of options. If possible, visit a few of them before making a decision.
Physical therapists, occupational therapists, and speech and language pathologists may all help with the process. It will help if you talk to them about how your loved one handles challenges. Share your advice on what motivates your loved one and what upsets them.
Rehab can be physically intense. Your loved one will need to be motivated. You’ll need to visit often and encourage them so they get the most out of it. You’ll also need to make sure they have comfortable, loose clothes and shoes that offer good support during therapy sessions.
Home Health Services
Home health services offer different types of care, and you pay for these services in different ways. It can provide nurses who help with treatments, monitor vital signs, give medicine, and change wound dressings. Sometimes they provide physical and occupational therapy to help with rehabilitation at home.
Home health aides and personal care attendants help your loved one with things like baths and sometimes do some household chores like cook, clean, and shop. Home care keeps your loved one in a familiar place where they’re comfortable, but it may not work if they need intensive care and must be monitored.
If you’re planning to use home health care, choose an agency carefully. If you have time, call and ask about the staff’s training and the services offered. If you’re hiring the person yourself, it’s important to get to know them and do a background check. You’ll also want to have them sign a written contract. Plan to be at home when a caregiver is present, at least at the start. And come up with a backup plan in case the caregiver can’t make it.
Think about any changes you need to make at home before your loved one returns. These could be things like grab bars, a hospital bed, a bedside commode, or moving them to a first-floor bedroom. Physical and occupational therapists can do home checks to let you know what changes you’ll need. Learn how to do any needed tasks from the home care providers. You’ll likely take over these jobs later.