by Thomas Orton
For a person with dementia, going into the hospital can be like a trip to the moon. For most older adults, a hospital stay – for tests or for surgery – is at some point inevitable. But for the dementia sufferer, time in the hospital temporarily but traumatically cuts off the familiar sources of support – friends, family, church, community. This article, and a follow-up in the next issue of Dimensions, will explore possible avenues for easing some of the pressure and strain on the person with dementia and everyone involved in his or her hospital care.
If the person you care for is frail or has multiple medical conditions, there is an even greater risk of an unexpected trip to the emergency room. It’s a good idea to be prepared. Pack an overnight bag ahead of time with all the necessities. On a sheet of paper in large bold print, type out all personal information, such as address, contact phone numbers and e-mail addresses, date of birth, social security number, insurance information, and religious preferences. Include a list of known illnesses or conditions, diet restrictions, food and drug allergies, medications, and normal blood pressure. Also place a copy of the individual’s living will or health care advance directives in this bag. Be sure to update all of this material each time there is a change in contact information, medications or medical status.
If you do end up in the emergency room (ER), let the person you care for answer the admission questions, if possible. This will give him or her a sense of control and dignity. The sheet you typed can be used as a prompt or simply handed to the admitting clerk. Make sure a copy is included in the hospital chart. ER visits are usually long, so plan on making yourselves as comfortable as possible. Bring along non-perishable snacks for each of you and something to read. Read newspaper or magazine articles aloud to the one you care for. The reassurance of a familiar voice will have a calming effect. Try to avoid leaving your relative alone in a waiting room, if at all possible. Even individuals who don’t usually wander may forget why they are there and decide to leave, or may go looking for you and become lost.
If the hospital stay is planned ahead of time, be prepared for resistance from the one you care for, even if they have agreed to the procedure ahead of time. Instead of merely insisting, “The operation is necessary,” or “You have to do this to feel better,” give the person a stake in the success of the procedure, a sense that their importance and cooperation are crucial: “Your doctor and I both need you to help us get through this difficulty.” If your relative is fearful and needs reassurance, try to make sure that you or another family member will stay with them and be there when they wake up. A foot or back rub and a hug may also help to calm an anxious patient.
These days, more and more medical procedures can be handled in an outpatient setting, so be sure to ask if day surgery is a possibility. If not, find out the length of the stay and if there are any tests or X-rays that can be done beforehand to shorten the duration. If consulting physicians will be involved – an anesthesiologist or a heart surgeon, for instance – try contacting them before admission. Make sure they know that your relative has dementia, and ask what to expect before and after treatment, and what side effects or drug interactions might cause increased confusion or memory problems. Ask about recovery time and any special needs such as wound dressing. If post-operative therapy is required, try to arrange it as soon as possible.
Set up a visiting schedule with family members so that the dementia sufferer has companionship as much as possible and so that that you, as primary caregiver, will be able to take breaks.
In the hospital, every intrusion – taking blood, getting shots, and swallowing pills – creates a new opportunity for confusion, fear and agitation. A private room, if available and affordable, will reduce noise and distractions and will make the person you care for calmer. Things taken for granted at home – changing TV channels or going to the bathroom alone – become suddenly more difficult and frustrating. Bring familiar objects – a favorite shawl, photographs or drawings by grandchildren – that recall the serenity of home.
As caregiver, you know this person best. You are the expert. If your mother’s dinner arrives under a plastic cover, someone may need to remove the cover and point out the food and utensils. In a sense, it is up to you to “train” the hospital staff to care for this person. Non-medical employees such as custodians and X-ray technicians likely have little experience in dealing with dementia. Helpless, angry, and afraid, the person you care for might lash out, make a racial slur to the woman bringing in a meal or a snide comment about the weight of the man changing a light bulb. You might be able to head off an unpleasant exchange by quietly letting staff know about your family member’s dementia. It is also important to identify and encourage sympathetic staff members. Seek out other hospital workers such as patient advocates, social workers, and chaplains, who understand hospital procedures and might offer help or suggestions to make the stay go more smoothly.
To promote awareness among the staff, some caregivers have found it helpful to post a sign on the foot of the bed stating, for instance, “My husband has Alzheimer’s disease.” For someone with mild dementia, however, such a sign might be humiliating and shameful. Maintaining dignity is more important in the hospital than almost anywhere else, and you as caregiver are in the best position to ensure that that happens.
The confusion and strangeness of a hospital visit can be nerve-wracking and disorienting. But there are other problems to confront. The most serious of these is delirium. Part Two of this article will discuss the hazards of delirium in the hospitalized dementia sufferer as well as considerations to be aware of when the hospital stay is over and the person you care for comes home.