ER Expectations: Caregiver

For Jim, another visit to a hospital emergency room (ER), another twist to his disorder, another day of both of us feeling helpless and frightened as his body jerks him around (figuratively, that is). For me, another day of being a caregiver, of putting his needs before my own, and before ours as a couple. For both of us, more lessons to learn. Readers will be glad to hear that Jim is home again, "feeling fine" (i.e., stop asking!) and not planning another ER visit.

When I sat in the ER this time, I began making a list of the things a caregiver and their loved one should expect and things they need when visiting the ER. That list got very long and so I had to cut it in two. This week is mainly about caregiver expectations and needs. Next week will be about helping your loved one have a better ER experience.

Expect to wait. Expect to wait for a bed in the ER. Expect to wait after you ring the bell for service once you are in a room. Expect to wait for tests, and then for the results of those tests. Expect to be bored...waiting is usually boring.

• Patience is at the top of the list. This can be difficult to manage. You understandably want your loved one who is ill and likely in pain, made comfortable NOW but "now" probably isn't going to happen in a normally crowded ER. If the unit is short staffed, it may take a long time (hours!) for them to get around to you. However, impatience only makes your loved one feel worse, may alienate staff and definitely adds to your own stress.

• Bring busy work...a book, crocheting, and the like. Also bring money for trips to places like the cafeteria.

• Ask how long each wait is likely to be. There are two reasons for this.

1. It is human nature to feel less stressed when we know when something (in this case, the waiting period) will end--and anything that decreases stress is worth doing!
2. You need to take breaks, but you definitely want to be there when needed. Often the staff can give you a broad idea of how long a wait will be. For instance, they told me that one of Jim's tests would take 45 minutes to an hour. That gave me time to go to the cafeteria and eat a relaxed meal.

• Take advantage of long periods of waiting to take breaks once your loved one has been admitted to the ER and has a bed, and later if he is admitted to the hospital. (This is called "self care.") Get completely out of the area. Go to the cafeteria. Check out the hospital shop. Hospitals usually have computers available for visitors to use; find one and play a game or check your email.

Expect to need more exercise. Sitting in a waiting room, ER room or hospital room can be hard on a caregiver's often elderly, often arthritic joints. Go for walks, short ones when you need to be close by and longer ones during a longer waiting period.

• Hospitals hallways are a good place for "mall-walking.

• If the weather is good, go outside and walk around.

Expect the ER to be cold. There's a good reason for this...cold is good for fighting germs, but being cold will increase stress for both of you.

• Come dressed in warm clothes and bring a jacket. Don't forget socks if you live in a place like Phoenix where it might be 100 degrees outside.

• If you are still cold, ask for warmed blankets. These are available for your loved one but staff will be glad to bring you one--or more, too.

Expect to feel stressed. It isn't easy getting a loved one out of the house, into the car and then into the ER. Any hospital visit is reason to worry, and most of us have had enough experience with worrying to be experts at it!

• Practice deep breathing and other stress reduction techniques. Consciously relax as much as you can.

• Look for positives--and talk about them when you see them. A nurse who is specially attentive and caring. A doctor who actually knows about your loved one's illness. Another caregiver who shares a few pleasant words with you. Just waiting is stressful and so celebrate each step towards the end of a wait, and towards the end of the entire visit.

• Choose not to worry. Worry is what we do when we can't find anything constructive to do...and all it does is add stress. Do everything you can--such as taking your loved one into the ER where he can get help--and then consciously let of of the worrying. This may not be easy, but it is as important a self-care step as taking breaks.

Next week, making an ER visit more comfortable for your loved one.

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia