ER and Hospital Expectations: Loved One

"There is simply not enough staffing in a hospital to calm, help and comfort a LBD patient. And sometimes they don't know what LBD is or the devastating, stressful effects." Comment by Arlene on 5/5/15. This weeks blog is in response to her very apt statements. How can we, as caregivers, help emergency room and general hospital staff calm, help and comfort our loved ones? Here are some ideas to get you started. Feel free to add comments with your own suggestions or concerns.

Expect it to be cold. Hospitals, especially ERs are cold places.

• Make sure your loved one is dressed warmly and ask for warm blankets if he's still cold.

Expect your loved one to be uncomfortable. Waiting will be more uncomfortable, and possibly painful, than boring for your loved one.
• Bring a pillow (or ask for one) and help him to readjust for more comfort.

• Bring some coconut oil laced with one of the soothing essential oils and give your loved one a hand massage. If the oils aren't allowed, used hospital-provided lotion. It won't be as soothing, but it will still be helpful.

• Use touch, lots of gentle touch. Holding his hand, smoothing his blanket over his shoulders, kissing his forehead all tend to be comforting.

• If your loved one is comfortable enough, he will likely zone out. DO NOT relieve your boredom (and your worry) by fussing over her.

Expect your loved one to be impatient. People who are sick don't do patience well. Add any cognitive involvement, as with LBD or Parkinson's with dementia, and it is even more difficult.

• Bring snacks, or buy them in the hospital (depending on your loved one's diet or hospital orders).
• Use music. Bring an ipod, or mp3 player with calming music.

• Use distractions, depending on your loved one's abilities and interests. A book, a cell phone game, a deck of cards, or even a favorite stuffed toy. I bring Jim's laptop so that when he is feeling up to it, he can play card games and check his email.

• Ask about internet connections. Hospitals usually have free patient wifi. This can be both helpful and entertaining for both of you.

Expect your loved one to be dependent. You are their stability, their connection with a time when they felt healthy. Even so, you still need to take occasional respite periods...going to the cafeteria, etc. Do not give these up!

• Choose times when your loved one is either asleep or otherwise involved (as with trips to x-ray, etc.) for your times away from his side.

• Set a return time--and keep to it if you possibly can.

• Stay connected by cell phones. Just knowing he can call while you are gone will decrease his agitation.

Expect the staff to really care. People don't usually enter the health care profession to make money. They do it because they like helping people. However, hospitals aren't staffed to offer the individual care you provide at home.

• Always treat the staff with respect. They may not know a lot about LBD specifically, but they are still professionals, doing their job to the best of their ability. (More about educating staff in a future blog.)

• Look for things to compliment. Your recognition of staff's hard work, or their caring attentions goes a long way. You know, honey instead of vinegar.

Expect to ask questions. There are usually things you can do for your loved one instead of waiting until a staff person gets around to it, but this varies with the hospital.

• Ask where the hot blankets are. Sometimes they will let you help yourself to these. You can keep your loved one warmer and save the staff many steps.

• If admitted, ask where the nourishments are kept. They will usually allow you to get items for yourself or your loved one from this area. Coffee, tea, ice cream, crackers and the like are usually available.

• Ask how to how to roll the bed up and down, and how to take the brakes off and move it. (The staff may frown on the latter, however.)

Expect to be an advocate. In times of illness and stress, the ability to think and communicate plummets.

• View behaviors as communication: irritation, restlessness, or frowning may be signs of discomfort or pain.

• Try to identify the problem and fix it. This may mean doing something yourself like asking for another blanket or passing information about something like pain on to the staff.

Expect your loved one to still feel "rocky" when you get home. An ER and possibly hospital experience is usually very stress-related. This decreases everyone's ability to function--including the caregivers. Give yourselves some slack! You are both doing the best you can. And don't forget the first caregiver requirement: patience! It is also the last one. Now if I can just remember all of my own good advice....

Soon: Hospital Visits: Being an Educator. That was supposed to be in this blog but it just got too long! However, next week we may have a guest blog on the financial aspects of caregiving.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
http://managingcognitiveissues.com

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

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