Being Prepared

The last two blogs have been about why you should consider hospice before your loved one’s very last days and how to choose one. This blog is about preparation in general. LBD is a very erratic disorder and every person living with LBD (PlwLBD)  expresses it differently. However there are some things that you can expect:

• There will be medications, some for the LBD and some to deal with those physical problems.
• Once present, Lewy body disorders WILL progress. There will likely be some times of apparent improvement, and it may take many years, but over time, the PlwLBD will become weaker and less competent.
• The time will come when a single caregiver will not be able to cope safely. The PlwLBD will become too helpless or the caregiver’s health will fail. More than half the time the latter is the case.
• LBD is a terminal disease. No one recovers from it, and the last year or so is usually physically and emotionally difficult for both the PlwLBD and their caregiver.
• Because of the many physical problems that accompany LBD, there is a very good chance that a PlwLBD will go to the emergency room, probably several times, and possible be hospitalized as well.

None of these are pleasant. They aren’t what any caregiver wants to happen. However, you can make them much easier to deal with if you plan ahead for them. Many people resist. They view such planning as giving up, or even as “making it happen.” It is neither. It is true caring, and smoothing out the path ahead.

Start with your pharmacist. It is easy to assume that all pharmacists are the same, but like doctors, they aren’t. Ask around and find one who is familiar with LBD and how it reacts with various drugs. Once you find one that you can trust, use this person for all of the PlwLBD’s medications. This may mean that you will have to drive out of your way, but it is worth it. Always ask this person about any over-the-counter drugs the PlwLBD takes as well.

In the same way, search home care staff and residential facilities well before you need them. Be aware that if you choose to go the home care route altogether, you need to plan on 24 hour staffing. Although you can often get by with just a few hours a week to start, this will change. Eventually, a family caregiver should not be providing more than a third of the care, preferably less. There are too many other things that the family caregiver has to do, besides the physical care.

One caregiver reported that when they did a pre-search of residential facilities for their loved one, the residential staff was surprised. They are used to people needing their services right away. Don’t let such an attitude stop you from searching out the best care you can find for the price you can afford. (Residential care is usually less expensive than full time home care, BTW, but it is still expensive.) However, if you do your searching before the need arises, you can be much more objective. You are also less likely to choose something less than you want just because it is available. There are several good sources of information to use when searching out residential placement, including both of our books.

Don’t neglect financial and legal issues. Find an elder care attorney and get all the legal papers drawn up while the PlwLBD can still make their wishes known. Again there are many resources available to guide you in this, including our books.

In most communities, there are several, or even many, hospice services. Again, search out the right one out well before you need it. Make sure it is one that understands the drug and behavioral issues involved as well as the usual dementia-related problems. And remember, the PlwLBD does not have to be within a week or a few days of dying. Take advantage of this service as early as you can.

Face these decisions as tasks that need to be done for the future. Once they are done, and plans are made, you can forget about them until they are needed. Then at “crunch time” when you are already stressed, it will be easier to make informed, caring choices.

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.

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.

Showtime and Hospice

This week, we are back with Mary and George, the hypothetical couple who helps me talk about caregiver issues a little more personally. George has had LBD for a few years now, and Mary is his spouse and caregiver. They just had a week of family visits and excursions. George rose to the challenge and not only was able to enjoy his grown children’s visit in his home, he played with the grandkids and even went out to dinner with the whole group a couple of times, all without any major incidents. But it’s been several days since the kids left and George is sleeping a lot. When he’s up, he can’t do much more than sit in his recliner, barely able to talk. He’s not eating and he can’t seem to stop drooling. Mary is worried. One part of her says it is time to contact hospice. Another part resists; she really can’t accept that their LBD journey is that far along.

Many of you are nodding already. You know what happened. George had a wonderful week of Showtime with his family, where he was “almost normal.” Now he is paying the cost, exhaustion with a lot of sleeping and less than usual abilities even when awake. This is normal. Showtime is really hard work! George will likely be functioning better in a few days although a whole week of Showtime is pretty stressful and he may not return all the way.

That said, this might be a great time for Mary have him assessed for hospice. This doesn’t mean that she expects him to die in the next week, or even month. It just means that his condition may presently meet the requirements for hospice and they have SO MUCH to offer caregivers that it is worth it to apply. It is very likely that George will eventually improve so much that he will no longer qualify for their service and be removed. But in the meantime, he and Mary will get the benefit of those services AND George will be all signed up. This will make it easier to reapply when his condition degenerates again.

Mary already knows which hospice service to call. Because LBD is a terminal illness, Mary knew that hospice would likely be needed. Early in the journey, while the decision was an intellectual one rather than an emotional one, she was able to make a thoughtful choice, with much less stress. This is important. If you wait, you will be faced with choosing from a multitude of hospice services at a time when you are too stressed to make good choices. Mary called several groups and asked questions about which of George’s drugs they considered “palliative” and therefore would allow him to continue taking and which they would not. She also asked how familiar the group was about LBD fluctuations, so that George would be less likely to get dropped from service because he was exhibiting Showtime for the evaluator.

When Mary called Karen, her support group facilitator, and told her about George’s lassitude, Karen suggested that Mary consider hospice 'caregiver help' rather than 'heralding the end.' “It’s a lot easier to accept that way,” Karen explained. People can and do live on hospice for many months or even years. My sister was on it for nine months. This was my introduction to hospice and it was a blessing for both of us. She stayed on it the whole nine months, but people also go on and off it as their condition changes. A person gets such good care with hospice that they will often improve enough that they don’t qualify any more. Then when the disease progresses and they qualify again, they can go back on the service.

Mary did call hospice and George was accepted. He stayed on service for a month before he improved so much that he was dropped. During this time, Mary learned what to expect and how much she appreciated the extra help. As George declines, she won’t be hesitant to apply again.

Learn more about hospice in the 6/15/13 blog, and in our books.

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.

Hospice is for Life not Death

No, it isn’t the end of the journey yet. But it may be time to start using the help that hospice offers. To qualify, a physician must certify that a person with dementia requires assistance with activities of daily living, is incontinent, AND can’t have a meaningful conversation. The alternative is that a physician can certify a life expectancy of six months. This does not mean that your loved one will die then. I’ve known people who were on hospice for three years before they passed.

Most families use hospice for only three days. What a shame! Hospice offers so much and it is all free, funded by Medicare. Hospice is not about death—it is about life and doing everything you can to make each day as enjoyable as possible. It isn't only families that resist--some physicians do as well. They insist they can’t say with any certainty when their patient is going to die. That’s not necessary. They only need to say that the possibility is there.

You owe it to your loved one, yourself and your whole family to start using this service as soon as you can. Start researching early, before the need is there. Learn about the various hospice services in your community. Interview them and decide which one you will call when the time comes. Find out just what has to happen before your loved one qualifies. Ask how well trained about LBD are their doctors, nurses, aides, social workers, their who staff. Do they understand about fluctuating cognition? About the LBD drugs and drug sensitivities? About LBD's ubiquitous urinary tract infections? Do they listen to you, the caregiver? Hospice services abound. Shop around to find the one that will serve you best. Services include:

• A nurse who visits at least once a week and supervises your loved one’s care.
• A  physician who is available to prescribe drugs and for consultations.
• A health care aide who comes in several times a week to help with baths and general care.
• Equipment such as hospital beds, wheel chairs, walkers and other assistance tools.
• Volunteers who visit with your loved one while you take a break.
• A social worker who can provide counseling for the patient, caregiver and the whole family, as needed.
• A chaplain who can provide spiritual help and grief counseling.
• A respite and critical care center that provides care while caregivers take an overnight, or longer trip. It can also provide critical care for most problems such as dehydration.(Patients are transported to a hospital if major care is needed.) Hospice center staff are experts at dealing with frail, elderly patients.

Hospice use requires the termination of all non-palliative or life-extending treatments. Heart medications, which extend life, would be withdrawn. In contrast, most LBD drugs enhance rather than extend life and should be exempt.When shopping for a hospice service, ask about their policy for your loved one’s specific drugs.

With better care, more attention, and less stress, the condition of a person on hospice often stops declining and actually improves. In this case, Medicare stops payment and your loved one must wait until they meet  criteria again to re-enter the service. Showtime is an aspect of LBD's fluctuating cognition where a person appears better than they usually are for someone other than their caregiver. When this appears with the evaluating hospice nurse or social worker, it can also result in discontinuation of services. (See our 10/26/2012 blog for more about Showtime.) However, you can reapply immediately and return as soon as a physician verifies that your loved one still meets the qualifications.

Don’t let your resistance stop you from using this valuable service—and start as soon as you can. It is a gift to your loved one if you do and a disservice if you don’t.