Educating Staff

Last week, Susan commented that her mother had been on hospice for a long time but that the experience had not been a good one because the nurses involved had no knowledge about Lewy body dementia. It is sad but true, that some hospice organizations are still working under the misconception that "all dementias are the same". As LBD caregivers, we know that isn’t true.

Naturally, a caregiver’s first choice of hospices is one that already understands the special needs and behaviors of the person living with LBD (PlwLBD). If you can’t find one that does, then the next choice is a group that is open to being educated about the disorder. This holds true, not only for hospice staff, but for a variety of other medical personnel as well. ER staff are a prime example. Since PlwLBD are notoriously likely to end up in an ER eventually, probably more than once, it pays to check out the hospitals in your area ahead of time to find out which ER staff is most LBD knowledgeable, or at least, open to learning. You may have to drive further to get to the more receptive ER, but the better care will be worth it.

When the hospice, ER, or any other staff is not knowledgeable but open to learning, it often becomes the caregiver’s job to provide the training. Most caregivers have had the experience of becoming teachers in such cases, like it or not. And most are willing to do so when it means better care of their loved one.

• Consider developing an information packet to share with less informed medical personnel.
• Start with the LBDA wallet card, which you can get from the LBDA website.
• The LBDA website has a wealth of information available besides the wallet card. Copy some of it off and add it to your packet. Choose articles that are short and to the point—there’s more chance they’ll be read!
• Our 5/29/15 blog, Educating the Hospital Staff, includes a list of items for your packet, including information that is specific to your loved one.
• Check out the Care Partner Booklets on LBDtools.com/carepartners.html. They have some great suggestions for information to share.
• Timothy Hudson’s webpage, www.lewy.ca is another very helpful resource with a multitude of articles.
• Teepa Snow teaches about using her 'Positive Approach" method with LBD patients. You can find many of her free Youtube videos here or go to her website where you can buy longer DVDs. She is a great teacher and fun to watch. Teepasnow.com Her videos are as appropriate for professionals as they are for family caregivers.
• https://www.youtube.com/results?search_query=teepa+snow
• Both of our books discuss the importance of choosing teachable professionals and what information to share.
• Finally, do make use of the LBDA Helpline, 1-800-LEWY-SOS, (1-800-539-9767). Anyone, including professionals, can call and talk to experienced caregivers about anything to do with LBD.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

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.

When You Have To Go To The Emergency Room

This week, Timothy Hudson is our guest blogger again. (Yes, HUDSON, not Hutton. Sorry, Timothy about the typo last week!) He is caregiver for his parents, one of which has LBD, often posts on the Facebook Lewy Body Carers site and operates a website that is worth bookmarking. See what he says about it at the end of this blog.

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!

1. Accompany LO unless impossible. Travel in ambulance with LO. Arrange return-trip later (make a standing arrangement in advance, if possible)
2. Bring your hospital kit ready with baseline notes, medications, clothes, phone AND charger, pen, paper, contact list, money, etc
3. Stay with them in Emergency Room, and if they are admitted.
4. 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.
5. 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).
6. If Trauma: advocate for sedatives and local anesthetics. Avoid general anesthetics.
7. Pain medications: use Tylenol whenever possible rather than opiates.
8. Ask early if the situation could be managed as an out-patient: inform staff that risks and downsides increase the longer you stay.
9. 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.
10. Ask for a quiet place, and try to keep LO and staff calm.
11. Open or close door/drape depending on LO’s preference and reactions.
12. Ask for alert-sounds from equipment in room to be silenced or quieter. This is usually done easily, but is rarely offered.
13. Use “noise-cancelling” headphones and play something they like: they can be comfortable, will diminish the chaotic racket and be peaceful, if headphones tolerated.
14. Bring something of interest to occupy your loved one.
15. Quickly establish that they need to maintain medication schedule or a decline and difficult behaviours will likely emerge.
16. 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).
17. Advise them that persons with Lewy Bodies commonly have severe neuroleptic sensitivity. Avoid traditional anti-psychotics whenever possible.
18. 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
19. 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).
20. Always insist that someone help in the bathroom to prevent falls.
21. If discharge is a potential, ask for details of what risk factors would be if you returned home.
22. Carefully make notes, and ask for things to watch for once discharged.
23. Carefully read the discharge instructions before you leave, digest the details, and ask questions while still at hospital with knowledgeable people available.
24. Get them home as soon as viable – often will recover faster there.
25. Don’t underestimate recovery times and relapse potential: almost always more difficult with LBD.

Thank you, Timothy, for sharing this. You will be able to find Timothy's complete article on the LBD Care Partner's page within a few weeks. (We are revamping the website to meet Googles mobile requirements or it would be sooner...)

Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.

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.

Before You Go To The Hospital Emergency Room

Our guest writer this week and next is Timothy Hutton, who is caregiver for his parents, one of which has LBD, often posts on the Facebook Lewy Body Carers site and operates a website that is worth bookmarking. See what he says about his website at the end of this blog. This week Timothy identifies what you need to do before deciding to take a loved one to the ER. Next week the second half of his article will discuss actually going to the ER.

LBD has extremely wide, gut-wrenching fluctuations – it is difficult to know if some things are a Lewy spike, or a potential coffin spike. How can you know?

Making the decision to go to a hospital emergency room (ER) is difficult, and frequently results from a worrisome change or crisis. Often, it is highly influenced by emotions. Using a baseline journal will help make a more objective decision, and will help with decisions when you are at the hospital.

Before a Crisis Hits: Consider, Plan and Discuss.

Consider the bigger picture. Think about the options and weigh the benefits of going to the ER. Consider the impact on your loved one: the potential for contracting another illness while there; how long it will take to be seen, assessed and treated; whether there is a possibility for worsening of the condition by being there; whether you can accompany them and how you will get back; and what your realistic expectations are of a cure.

Discuss and plan for likely future scenarios. Understand options and potential outcomes. For example, the success rate of resuscitating an elderly person with chronic conditions can be close to zero, and CPR and related processes can be extremely intrusive and traumatic. Would your loved one want that? Is quality of life more important than length? What happens if resuscitation is successful, but the condition is profoundly worse than before? What would you wish for if you were in their shoes?

If you think through those types of considerations, some of your decisions can be pre-made, or at least pre-weighed. You will also have had the time to investigate options and get supports in place to make either choice workable.

You will still have to make the final ER-trip decision, and this article provides two streams. One includes specific points to help make the decision. The second section explores what to do if you decide to go, what to take, what to do while your loved one is in the ER, and what to do afterwards -- whether you are discharged or not.

Do You REALLY Need to Go to The Hospital ER?First: Keep calm. Breathe. Your own agitation can magnify problem, make LO worse or less communicative.

1. Weigh out the impacts vs. potential benefit of going. Avoiding the hospital can sometimes be the healthy choice.Lewy-speech and communication is often compromised – if symptom is being described, can you assess it yourself? 
2. Listen carefully, be open, dismiss your own preconceptions, reflect to your LO, reinterpret, repeat.
3. Check for obvious possibilities first (UTI, infection, dehydration, respiration, constipation). Can you set up something with your General Practitioner to provide you with sample jars to make it simpler for you to bring in a specimen for testing, or get over-the-counter UTI tests?
4. Have a list of key contact people with phone numbers that you can call to consult. Have this with you at all times (electronic or printed, both is best).
5. Is there a house-call doctor option available? Telehealth? The cost may be worth it for the lowering of disruption and exposure to hospital environment.
6. Have plans, and have alternates: techniques to get off the floor if fallen, someone to call in emergency to help or check on the home. Instead of 911, there may be a local, non-emergency, number you can call to have firefighters come to get a person up from the floor.

Next week: More Timothy Hutton: When You Have To Go To The ER.

Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.

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 Hutton.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.