Last week's blog was the first part of Timothy Hutton's great suggestions for hospital emergency room (ER) visits. If you haven't read it yet, be sure to read it before you read this. This week is simply a list of all the things you need when you do have to take a loved one to the ER. As I read it, I realized that almost every item could be a blog in and of itself! But Timothy's goal was to make a thorough, but short as possible list that carers could refer to and use. I think he succeeded!
- Accompany LO unless impossible. Travel in ambulance with LO. Arrange return-trip later (make a standing arrangement in advance, if possible)
- Bring your hospital kit ready with baseline notes, medications, clothes, phone AND charger, pen, paper, contact list, money, etc
- Stay with them in Emergency Room, and if they are admitted.
- Rigourously attend to hygiene: MRSI and C-Diff, etc., are potential killers, and can frequently be avoided. Apply even greater rigour for yourself. Disinfect, wear a mask, etc.
- Provide frequent close physical contact with your loved one to provide comfort, continuity and connection, reassure frequently, apologize and promise to do what you can to remedy (even if that is overly optimistic).
- If Trauma: advocate for sedatives and local anesthetics. Avoid general anesthetics.
- Pain medications: use Tylenol whenever possible rather than opiates.
- Ask early if the situation could be managed as an out-patient: inform staff that risks and downsides increase the longer you stay.
- Try to prevent hospital-induced delirium as much as possible. Try to recognize the difference between their dementia, a Lewy swing, and the onset of delirium.
- Ask for a quiet place, and try to keep LO and staff calm.
- Open or close door/drape depending on LO’s preference and reactions.
- Ask for alert-sounds from equipment in room to be silenced or quieter. This is usually done easily, but is rarely offered.
- Use “noise-cancelling” headphones and play something they like: they can be comfortable, will diminish the chaotic racket and be peaceful, if headphones tolerated.
- Bring something of interest to occupy your loved one.
- Quickly establish that they need to maintain medication schedule or a decline and difficult behaviours will likely emerge.
- Bring 24hrs of medications, pre-made in dosettes. Even if they will not allow your medications to be used (some will), the sooner you can administer them once discharged, the better (possibly as soon as you get out the door of the hospital).
- Advise them that persons with Lewy Bodies commonly have severe neuroleptic sensitivity. Avoid traditional anti-psychotics whenever possible.
- Accompany LO to all tests. Both as an advocate, and to ensure Showtiming doesn’t convince the technicians that LO is fine, or can stand/walk, or is not who they believe ‘em to be
- Request a paid-carer if you have to be away, depending on LO’s cognition. Some hospitals will have “sitters” that will be assigned without you having to pay for it (but they’ll never advise you of that, and they are frequently clueless about dealing with dementia and delirium).
- Always insist that someone help in the bathroom to prevent falls.
- If discharge is a potential, ask for details of what risk factors would be if you returned home.
- Carefully make notes, and ask for things to watch for once discharged.
- Carefully read the discharge instructions before you leave, digest the details, and ask questions while still at hospital with knowledgeable people available.
- Get them home as soon as viable – often will recover faster there.
- Don’t underestimate recovery times and relapse potential: almost always more difficult with LBD.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. (Nor is Timothy Hudson.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.