Dementia patients are confused. Being hospitalized in a strange environment surrounded by strange people and being powerless to “escape” is very confusing and scary for them.
Whatever the reason is for the hospitalization everyone who interacts with your loved one will need to be aware of the dementia diagnosis and will need to, in some way, deal with the symptoms. A dementia patient requires extra care, extra supervision, and extra understanding.
The dementia caregiver will need to be an advocate, an educator, and a friend. Hospitalization is a challenging time. Here are some things that we learned during the many times our Mom was hospitalized.
Hospital Admission
A dementia patient is not usually hospitalized for the dementia symptoms. Most of them are elderly and when they are hospitalized it is often for something like cardiovascular disease or diabetes. The added symptoms and pain that these kinds of diseases bring can make hospitalization even harder for the dementia patient.
If your loved one is being hospitalized for scheduled tests or surgery you will have the opportunity to pack a bag with their toiletries and clothes and also to gather needed medical and insurance information.
Talk to your loved one about the upcoming hospitalization. Explain what it is for, what they can expect, and how long they should be hospitalized. Assure them that you will see that they get the best possible care.
Avoid making promises that you may not be able to keep, like it won’t hurt, or that you will always be with them. If you do, they may become even more confused and agitated if they feel pain or if you are separated. Do all that you can, but realize that you can’t do everything.
Emergency Room Wait Times
Most of our Mom’s hospitalizations in her later stages of Alzheimer’s disease resulted from visits to the emergency room. She was brought there by ambulance twice and once she was told to go there by her primary care physician.
Whether we were waiting in the crowded waiting room or in the treatment room to be seen by a doctor waiting was a long, trying, difficult, tiring ordeal. Mom was in pain. She was confused. And often she was not able to get up and move around. She would get angry at us for keeping her there.
Because the hospital was so crowded, and because she required extra care due to dementia, it was not unusual for her to be admitted from the emergency room, but have to wait 2, 3 or even 4 days in a small emergency room treatment “room” with just a curtain for a wall before she would be moved to a regular room.
Mom was confused, sad, and angry, in pain and there was nothing we could do to help her. Waiting with her was one of the hardest things we have done.
Always keep an “Emergency Bag” packed at home to grab as you run out the door. Having the necessities with you while you wait can make the time a little more bearable.
Find ways to distract your loved one. Listening to music or singing, talking on the phone, cuddling with a stuffed animal, telling stories, looking at picture books or magazines are all helpful activities. Set aside your own discomfort during this time and make your loved one as comfortable as possible.
Be sure the staff (all of them) knows of your loved one’s dementia symptoms so that they can adjust their care techniques to best serve her. Don’t assume that all of them have read the medical chart or even had any contact with the attending physician.
Strangers—Doctors, Nurses, Everyone!
Added to the pain, anger, and general confusion, the dementia patient will be surrounded by strangers while they are in the hospital. Doctors, nurses, specialists, therapists, food service workers, housekeeping staff, volunteers, and many, many others—sometimes more than one at a time.
Your loved one will most likely not even see their Primary Care Physician while they are hospitalized. There was one time that I (Paula) never even met my Mom’s treating physician. I kept missing him and the nursing staff could never give me an accurate time frame when he would make his rounds.
Besides trying to comfort and reassure your loved one you will also need to communicate effectively with all of those involved in her care. This can be extremely difficult when you are communicating only through notes left at the nurse’s station.
If possible, try to get the hospital to assign a specialist who is familiar with your loved one’s case. Mom had been hospitalized several times with problems related to blood clots and saw the same vascular surgeon several times. It was easier for us to talk with him because we didn’t constantly have to explain our Mom’s medical history.
Whether your loved one has a physician who is familiar with their case or not, be sure to write down his name, office contact information, specialty, and the hours he usually does his rounds. He may be reluctant to give you his office contact info saying that you can leave a message at the nurses’ station if you need to speak with him, but I would push him for it anyway. Leaving an important message with a staff member who works specifically for that doctor can be much more efficient than leaving a message with an over-worked nursing staff at the hospital.
The Dementia Patient Needs an Advocate
If you are the only caregiver you may be in for a long stay. Many sources recommend that a patient never be left alone when they are hospitalized. This is especially important for a dementia patient. A dementia patient lacks the ability to ask proper questions and to understand instructions. She needs someone to be her advocate.
It is possible that some of the people who provide care and services to your loved may not be familiar with dementia and the symptoms it produces. You, as the caregiver may need to explain why your loved one is acting the way they are acting.
It was so refreshing when we got a nurse or therapist who was well-acquainted with dementia symptoms. They were able to help us deal correctly with our Mom. When she would get out of bed, again, even though her legs were not strong enough to support her weight, the staff who understood her desire to escape would gently help her back to bed. Not everyone was as helpful as they could have been.
It may be useful to make up a sign to put in your loved one’s room (Hang it on the outside of the door, if possible, so most people who enter the room will see it.) The sign could say something like,
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“Hi! My name is ____________. I have dementia.
If I
- Cry
- Don’t answer your questions
- Speak in gibberish
- Repeat words or phrases
- Am scared of you
- Get out of bed and wander down the hall
- Cannot control my bowels
- Get very restless at night time
- (and any other symptoms your loved one may experience)
Please understand that it is part of the disease. I am normally a very pleasant, friendly, person, but I have not been myself lately. Thank you for your understanding and support.”
Along with educating the hospital staff the dementia caregiver will also have the responsibility of reassuring the dementia patient. The confusion of the disease may make this an ongoing job, but just having your familiar face there as much as possible will help to calm the dementia patient and to reassure them that they are safe.
It is difficult enough for most patients to comprehend the diagnosis of their illness, but for a dementia patient it may be impossible. The dementia caregiver will have to be the one to ask questions and make decisions. If you have a medical power of attorney and an advance directive in place these decisions will be easier to handle.
It is also necessary for the dementia caregiver to insure the safety of their loved one. Check medications and dosages, know why a treatment is being given and what are the expected results. If something doesn’t seem right, ask questions. Get the answers you need even if you have to demand them. Don’t allow the hospital staff to be vague with you.
If possible, enlist the help of friends and family members to stay 24/7 in the hospital room. Be sure that they are familiar with your loved one’s normal symptoms and what thet can be expected to act like in the hospital.
Leave a notepad and several pens in the room for the caregiver to write down everything that happens to the patient. Designate a section in the notebook for questions and answers. If one caregiver has a question for the doctor they can write it down and even if they aren’t there when he shows up the caregiver who is on duty can ask the questions and write down the answers.
Dealing with a dementia patient in the hospital is challenging. It is tiring and it can be quite frustrating. Remember that the hospital staff, doctors and nurses included, work for you. You don’t have to be bossy, impatient, or unkind when dealing with them, but you are trusting them with someone very precious to you. Be sure your loved one receives the very best care possible.
While You Are Spending So Much Time At the Hospital . . .
Listening to audio books can be a great source of information and a relaxing distraction.
See if the Hospital Will Provide a Watcher or a Sitter
Our Mom had severe blood clots. This coupled with the dementia symptoms made her at risk for falling. Plus, she didn’t understand that the I.V., the catheter, and any other tubes or equipment could not just be pulled off. She needed someone to stay with her all the time.
With Lanette living out of town, Paula having a family with young children at home, and our step-dad having health problems that prevented him from staying 24/7 with our Mom at the hospital, we needed help.
Friends weren’t always available. For these times the hospital provided a watcher or a sitter to stay with our Mom. This person was usually a medical student or nurse of some kind and his/her job was to stay in the room and make sure that out Mom stayed in bed and had the things that she needed.
These helpers didn’t provide any support in the way of communicating with the doctors or nurses. They weren’t able to give us any medical advice. They didn’t administer medication. But what they did do was invaluable to us. With their help we knew that Mom was safe.
Fall Prevention
Many dementia patients are considered to be a fall risk. They may not be unsteady on their feet, but because they tend to like to wander they may be treated as a fall risk. This designation means that the hospital staff will do everything they can to keep them in their bed or at least in their room.
When our Mom was in the hospital they always put a brightly colored autumn leaf on her door to alert people that she was a fall risk. If a watcher/sitter wasn’t available and Mom was alone in her room they would often put restraints on her in the form of a vest that wrapped from her front to her back and was tied to the bed frame.
This may seem cruel and, honestly, it made comforting Mom even more difficult, but after she tore an I.V. out of her arm and bled so badly she required a complete change of clothes and bedding we saw the necessity of these restraints.
Know your loved one’s limitations and risks and work with the hospital staff to make them as comfortable as possible while also making them as safe as possible.
Sundowners Syndrome
Dementia patients may experience what is called Sundowners Syndrome. This is what happens when the dementia patient gets very restless and agitated in the evening and at night time. This condition seems to worsen while they are hospitalized.
Patients with this syndrome may lie down and then sit back up repeatedly, pick at the bed covers, pull the covers on and off over and over again, doze off, but keep their eyes half open then suddenly wake up again and start these behaviors again.
No one yet knows exactly what causes this phenomenon or how to prevent it. While our Mom was like this the only thing we found that helped was to distract ourselves. We kept an eye on her to be sure she was safe, but we would read, listen to music, watch movies, etc.
Sundowners Syndrome is exhausting to watch. Our Mom would experience it very badly in the hospital and for a couple of weeks after being released. Anticipate needing to deal with this, and prepare yourself.
Dementia Patient Emotions during Hospitalization
No one wants to stay confined to bed, especially if they are kept there with restraints. Being hospitalized brings fear, anger, confusion, sadness, and pain. These emotions are magnified in the dementia patient.
Our Mom would get angry at us for keeping her there and demand that we release her so she could go home. If we had to leave her while she was awake she would cry and become so sad.
She thought that the doctors and nurses were holding her hostage and tried many times to escape. It was so difficult to see our Mom act this way.
Whatever symptoms your loved one experiences under normal circumstances, expect them to worsen while in the hospital. Do what you can to reassure and comfort them, but realize that the treatment they are receiving is necessary and that it is for their good.
Understanding Discharge Instructions
Ultimately the goal of a hospital stay is for the dementia patient to be released well on the road to recovery. As the dementia caregiver it is your responsibility to understand the discharge instructions and to provide the care your loved one will require at home.
If it will not be possible for them to return to their old living arrangements then you will need to research care homes, assisted living homes, or nursing homes, or the possibility of moving the dementia patient into your home or the home of another caregiver.
Work with the doctors and nurses well ahead of discharge time to be aware of what your options may be. Know what level of care will be necessary after discharge and make appropriate plans. If possible have everything in place before your loved one is discharged as trying to hire help, interview care homes, etc. will be extremely difficult if you must bring your loved one along with you.
If you need to apply wound dressings, administer injections, monitor any symptoms or any other special care, be sure that you thoroughly understand these instructions before the patient is discharged.
Depending on the reason for the hospitalization it is possible that your loved one’s dementia symptoms will have worsened by the time they are released. Our Mom got steadily worse following each hospital stay. There is nothing that can prepare you for having a parent or spouse forget your name, but you can prepare yourself for the possibility that your job as caregiver may be more difficult following a loved one’s stay in the hospital.
