By Paula Farris
(Editor’s Note: On a regular basis, we invite health care professionals and family caregivers to write a guest blog. Today’s guest post is written by Paula Farris, a family caregiver, who offers tips on managing your care recipient’s hospitalization.)
For a person with dementia symptoms being hospitalized is challenging. In addition to the condition that caused the hospitalization, the caregiver and the hospital staff will also need to address the dementia symptoms.
Emergency Room Wait Times
Whether the dementia patient arrives by ambulance, is brought in by a concerned friend or family member, or is told to go there by her primary care physician, the destination is still the same—a crowded emergency waiting room. Long waits can be hard for anyone, but for a dementia patient, especially one who is sick or injured, they can become unbearable.
Your mom may not understand why she is there. If she is in pain or feels ill she will want the comfort of her own home. It is possible that she will sit quietly and not complain, but don’t count on it, at least not for long.
If you explain to her why you are waiting and why it is important for her to see a doctor as soon as possible, she may not understand you or believe you. And she most certainly will soon forget your explanation.
It may help to inform the staff in charge of her case of her dementia diagnosis. This may give her some priority over other patients. Stay calm when talking with the hospital staff even if you have already been waiting for quite a while. A gentle reminder that your mother needs her pain medication or that she is becoming agitated may move things along more quickly.
To distract my mother while waiting for her to be seen, I would call one of my sisters on my cell phone and let her babble on for hours. This helped her to stay calm.
Strange Doctors
Even if your care recipient’s primary care physician (PCP) told you to take your mom to the emergency room, or if he is the one who had her admitted, you will probably not see the PCP while she is in the hospital. Most PCPs do not make hospital rounds, but rather they leave that up to the specialists assigned to the patient’s case.
Unfamiliar surroundings and strangers can make a dementia patient even more anxious. If your care recipient has an ongoing medical condition ask the hospital to contact the specialist(s) she usually sees. This may not ease her mind much since she may not recognize this physician, but it will make your communication with him easier.
If your mom is assigned a doctor she has not seen before then 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.
Enlist the help of friends and family members to stay 24/7 in the hospital room. Be sure that they are familiar with your mom’s normal symptoms and what she 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. If they aren’t there when physician shows up, the caregiver 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 she receives the very best care possible.
What tips would you add? Feel free to share in our comments section.
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Thanks for this article. After my Mom’s four ER visits in the past two months, each lasting over 7 hours, I wondered why there were so few articles about treating ILLNESSES in Alzheimer’s patients. One hears that in the last stage, the organs just start to shut down. And they sort of evaporate. Right? No, they still get the cancers, the ulcers, the bedsores, the heart attacks and the strokes. And there’s a great possiblity the Alzheimer’s patient can’t even say where the pain is or how severe.
In these recent ER trips, and the nausea filled “I’m dying” weeks that followed, I found I also had to climb inside her body and try to interpret. I was finally able to read her digestive distress and realize it was pressure filled GAS (not churning nausea), and then the churning intestines caused by too much Mylanta. I was causing one distress by treating another.
On the occasions where I bought Mom in, I got her checked in and then waited OUTSIDE the ER doors so she would not be bothered by puking flu ridden, bloody, crying people inside. We were visible to the desk, so that was fine. I diverted Mom’s attention to the plants, birds etc. Much more peaceful and less likely to pick up a hospital bug.
The big surprise on the recent trips to the ER, which was in a new wing, was that they were now ultra-computerized, with rolling computer input stations all over the 50 room unit. It was a big deal for this chain of hospitals to be computerized at last. After the first ER visit, I could not get what was wrong with the situation, where were THEY? This was a classy joint, and Mom was hooked up to all sorts of monitors.
A series of nurses showed up, did a procedure and disappeared. Finally I figured it out. They were all obsessed with writing down the procedures and updating their files. That is where the attention went, and I can imagine it was a mandate. They were not going to let this data slip out of their hands. However, what they sold away was “mercy.” Relief was kicked down the road, and we were supposed to get mercy from knowing that we were now officially “in line” to get to Xray. They’d administer the anti-nausea drug, just as soon as they took about four blood samples. For Chrissakes, this 90-year-old frail woman is strapped to a backboard with a neckbrace, retching…for about four hours. Can you imagine the agony of this? Their solution was to reach for the vacuum device and then tip the board on an angle so if she threw up, it would go downhill. They get this set up and leave.
Oh, and in three of the ER sessions, they never did handle the agony of the fall or the cause of the nausea. They found out what wasn’t wrong (broken bones, concussion, obvious GI problems) then kicked her out, once at 3 am.
Anyway, what I found valuable was to have a bag of ER stuff ready. Extra shirt, pants, underwear, poise pads. Favorite children’s books, photographs, battery operated massage units with plenty of batteries. Food for me like NutriBars, ginger snaps. It may sound insensitive, but bring your camera and film what’s going on. Mom loved to see the pictures and videos played back on the small screen. Perhaps you could film the doctors and nurses waving to the person. Anyway, this worked for my mom, and gave her a sense that “these parts are done already, see, so we’re on our way to getting better.” If it’s a longer stay, I will bring my portable DVD player with my ambient squirrel nature videos I made, and other favorites like the Classical Baby Series and Andre Rieu. The cell phone calls from her granddaughters were extremely important, but I did not make the hospital “a scene” of suddenly concerned relatives rushing down to make a guest appearance.
And as far as long hospital stays, the time she was in for a week with fever dementia, I was at the hospital as much as possible. Wheeling her around the hallways, finding real rays of sunlight, looking at paintings, trying to get her to eat. It was like trying to wake up a rock. My sisters think that once Mom is in a hospital or nursing home, I get time off. Just the opposite. The home life continues with all the chores and pet care…but now there’s errands and standing guard as many hours as possible. They don’t get that mylar balloons and oversize cards and flowers do not begin to cut it…not in MY world.
.-= carol Wright´s last blog ..Mom conducts "O Mio Babbino Caro" on Andre Rieu video =-.
Hi Carol–Thank you so much–your post is soooo helpful. I love the idea of an ER bag that’s ready to go. A family caregiver once told me she always an overnight bag packed and ready to go, just in case her care recipient was hospitalized. She wanted to be ready to stay for the long haul. I love what you keep in your bag. It’s just never easy, is it? And, it’s sometimes hard to imagine these kind of difficult moments. Hope you and your mom are enjoying a good day.
.-= Denise´s last blog ..Show: Share Your Caregiving Personal Paradise =-.
The hardest part for me is having someone spell me. I can’t be with mom 24/7 and my family won’t spell me in my caregiving and when they do visit her, they disrupt her care. It’s exhausting. Last week she was taken to a hospital for a 51/50 from her Alzheimer’s unit. And then she was moved to a nursing home who informed me she would have to go somewhere else because they couldn’t handle her active nature. It’s either another Alzheimer’s unit or a psychiatric holding facility. This constant change of venue can’t be good for mom.