Shortly after I began to suspect my mom had dementia, she wound up in the emergency room complaining of chest pain. She had a 104-degree fever and a dangerously high white blood cell count, a sign of infection. Soon, an IV dripped antibiotics and pain killing narcotics into her, all sorts of monitors were beeping, beeping, beeping, and she was being rolled around the ER for X-rays and MRIs.
Though dramatic, most real-life visits are not at all like a fast-paced television hospital show starring good-looking doctors trying to diagnose complex conditions. Real stays involve endless waits, punctuated by important pop-in visits from medical staff that usually happen when you step out for a coffee. Over the course of her 10-day stay, my mom ripped IV’s out of her arm, failed to heed instructions to press her call button for assistance getting out of bed, and screamed at anyone who tried to touch her. I comforted her, helped her to the bathroom, apologized to medical staff, and consented to medications, tests, minor procedures and eventually to a fairly routine but major lung surgery. It was my first encounter with a long-term hospital stay, and the first time I made life decisions on another’s behalf. The experience, though handled well medically, gave me pause.
Hospitalizations are not easy for anyone, but they can be especially difficult for those with dementia.
Hospitalizations are not easy for anyone, but they can be especially difficult for those with dementia. Patients are thrown off their routine, seeing new faces in a new place. Sleep patterns are sent out of whack, which adds to irritability as the patient is poked, prodded and tested. Medications affecting cognition and balance flow through the veins, impacting an already struggling nervous system. And it’s not just the patients who are feeling overwhelmed; family members’ stress levels elevate as they watch their loved one suffering.
Unfortunately, people with Alzheimer’s Disease are hospitalized twice as often as their peers without the disease, according to Medicare data compiled by the Alzheimer’s Association. That makes preparing for a potential hospitalization and recovery all the more important for caregivers.
After my experience, I reached out to my cousin, Daniel Perri, a physiatrist who has spent more than 30 years specializing in developing recovery and rehabilitation plans for patients after they are released from the hospital. For his patients with dementia, he tries to manage pain without using opioids or sleep medications that cause dizziness and disorientation. Additionally, he advises families to consider the following when handling a loved one’s acute medical care during and after hospitalizations:
- Consider the necessity of the procedure and the effects of medications used before consenting to it on behalf of your loved one. Try to determine if there are alternatives that may be less disorienting or will make the recovery easier.
- Provide comfort to your loved one by having familiar faces present and bringing special items from home, like photos or stuffed animals.
- Inform all medical staff and hospital personnel that your loved one has dementia. When family members can’t be present, ask hospital and rehabilitation staff to check in more often or move the patient to the hallway if she becomes frightened when alone. Ask the staff to set a bed alarm so they can be alerted if your loved one is trying to move on her own.
- Talk with the hospital case manager as soon as your loved one is admitted, so you can begin planning the hospital discharge. If the patient lives in a skilled nursing or assisted living community, work with the nursing staff there to plan the transition home. If the patient is in a private home, line up an agency for additional caregiving so that you don’t have to fill out the paperwork afterwards.
- Find out what the usual recovery plan is for the treatment, including whether or not the patients go to rehabilitation centers or back home.
- Check with all the patient’s health insurance providers about coverage for the procedure, rehabilitation stays and additional home care.
- Line up assistance with extra caregivers (family or paid help) for your loved one’s eventual return to her residence.
In my case, I learned that as tricky as the hospitalization itself can be, the recovery’s success rests more heavily on the patients’ caregivers. Depending on their needs and insurance coverage, patients might be transferred to a rehabilitation center or sent home with a prescription for visiting therapists. There are likely to be more new faces, new medications to manage, decreased mobility, exercises to do and follow-up physician visits. Plus, dementia patients may experience longer term side effects from anesthesia. Even when the treatment is successful, the entire experience can initially cause patients more disorientation than usual and leave caregivers more exhausted.
After 10 days in the hospital, my mother transferred to a skilled nursing facility for a 10-day rehabilitative stay. She had no idea that she had had surgery, repeatedly questioned why she did not feel better and asked why she needed to be wherever she was. Physically, she recovered quickly. But cognitively, it took several months for her to normalize. She had needed massive amounts of medication to get through the illness and had been under general anesthesia for five hours. Her disorientation forced me to delay her badly needed hip replacement surgery because I worried about how another surgical procedure would affect her mind. Meanwhile, she was in serious pain with every step she took and wanted to do whatever was necessary to improve her mobility. Nine months later, after she had reached a good functional state and no other serious health conditions emerged, I reasoned that the elective surgery would benefit her quality of life and that actively managing the surgery and recovery was probably better than letting the entire hip collapse in what could be a catastrophic fall.
Planning for the recovery period can also help ensure that your loved one is not readmitted to the hospital with a relapse.
I met repeatedly with the surgeon and talked with the anesthesiologist pre-operation who explained he would be using certain medications because of my mom’s diagnosis. Remarkably, she was out of surgery within two hours, walking later that afternoon and back in her assisted living community the next day. I don’t mean to equate in any way the two events in terms of their severity or compare the way in which they were handled. One was an emergency, the other elective. In both instances, the medical staff were incredible. But for me, second hospitalization was easier to plan for because I knew how to coordinate aspects of the medication and the recovery.
It’s not an easy time, so planning ahead can help smooth the transitions your loved one will face during and after hospitalization. Planning for the recovery period can also help ensure that your loved one is not readmitted to the hospital with a relapse.
Hopefully, you’ll never have to visit a hospital with your loved one, but if you do, keep Dr. Perri’s advice in mind, bring a good book and most importantly be kind to all the new caregivers you meet. Teaming up with staff will help ensure good care for your loved one and can help ease the bumpy transitions.
Rachel Bedell, MPH writes about managing care for loved ones with dementia. She lives in Northern Virginia with her husband and three kids.