The Whitworths of Arizona, bringing science to you in everyday language.

Friday, May 30, 2014

Book of the Week!

We are honored--and thrilled--to announce that our book, A Caregivers Guide to Lewy Body Dementia, was named Book of the Week by Alzheimer’s Weekly and Dementia Weekly, a well-known blog, on May 19th. We believe that book has helped many people but it is always rewarding when others recognize that.

The Guide isn’t our first book about Lewy body dementia. The first one was Riding a Rollercoaster with Lewy Body Dementia. It came about after we’d been teaching about LBD for a few years. I’d already had one book published and was working on another. (Incidentally, the book I was working on is STILL unfinished—other’s keep getting in the way!) We had the information from Jim’s experiences and from the teaching we’d been doing in care facilites. It was just a matter of putting it together.

We did that and came up with Riding a Rollercoaster with Lewy Body Dementia, a book directed to entry level care staff--the people who do the hands-on care of our loved ones in residential care. We printed, bound and distributed it ourselves. We put it on our website and did 17 free presentations that summer to sell the book. We sold 500 copies the first year and people still ask for it occasionally. Just recently a caregiver commented that he had both books, but he liked the Rollercoaster best because it’s comb binding allowed him to lay it out flat so that making notes in it was easier. “I have notes and bookmarks all through it,” he explained. Presently, the Rollercoaster is available to care staff as part of a staff training package.

It was my writer’s group, and Ginger Fleishens, especially, that made the Guide happen. They’d been with us through the writing of the Rollercoaster and she insisted we should submit it the book to publishers. “It’s needed, and the time is right,” she said. That was true. There were as yet no non-scientific (i.e., books written for the everyday person) books about LBD on the market. We submitted our manuscript to several publishers. Noreen, of Demos Medical Publishing was interested, but only if we changed the focus of our book. “Care staff don’t buy books,” she said. “Family caregivers do.” We knew she was right. It was the caregivers who had bought most of the Rollercoaster books, not the care staff.

We were a little disappointed; we felt like we were preaching to the choir. Caregivers already knew much of what we wrote about and many of them had horror stories about how care staff did not know about or understand LBD. That had been the audience we wanted to reach. But we bowed to Noreen’s knowledge and rewrote the book. A year later A Caregiver’s Guide to Lewy Body Dementia was born. It has been a best seller on Amazon since it was published in 2010 and received the Caregiver Friendly Award from Today's Caregiver Magazine in 2012. Now we are please to add Alzheimer’s Weekly and Dementia Weekly’s “Book of the Week” to our list of honors.

Our third book about LBD, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders will soon be available. I’ll talk about it in a future blog.

A Caregiver's Guide to Lewy Body Dementia is available at

Friday, May 23, 2014

Long Term Care Placement Earlier Rather Than Later

Issues around long term care (LTC) are always a major topic at caregiver support groups. Marla, a surviving spouse said:

“I would have only considered residential placement for Bill after he was so far gone that it wouldn’t matter where he was. It didn’t come to that and I’m glad. Bill had a bad heart and he died when his pacemaker quit working. Now I’m learning that perhaps entry into a long term care facility is better sooner than later. That if a person has enough social skills left to interact with others in their new home, they will be happier in the long run. I would never have considered that. I always thought that if residential placement had to happen, the later the better. That it was better to keep him at home as long as I possibly could."

This very common view does not take into account the fact that emotions last much longer than thinking and memory. It takes a certain amount of social skill to adapt to a new home and feel emotionally connected with it. Wait too long, and it just won’t happen. With LBD, there will always be periods of better awareness and functioning. During those times, a person who entered long term care with few remaining social skills is likely to feel very lost, scared and lonely during those times of awareness.

When you first place your loved one into LTC, your job is to help him adapt. Left alone, he’ll likely stay in his room. Even if his social skills are still present, they are seldom up to taking the initiative. That’s your job. As you go out and visit, join in the activities and such, he will follow. As he begins to feel more comfortable, he will be able to participate more.

You may want to stay with him most of the time but you need to have time away during the day. He needs this too. It will be difficult at first, but these hour or two absences are the way he learns that you aren’t deserting him—that you will return. LBD erodes the ability to learn; if you wait too long, he will continue to feel deserted every time you leave. It takes most people about six repetitions to learn a new phone number—or a new task. Expect your loved one to take twice that long—or more.

Your loved one picks up on your emotions and so the better you can feel about the move, the easier it will be for him to adapt. Choose the best LTC you can, but a less attractive one close to home is better than an excellent one too far away. You need to be able to easily divide your time between home and the LTC. Also, this will be closer to your other activities, such as church. You will be able to slip away for a quick nap at home, or errands or lunch with friends and return, revived.

You are your loved one’s advocate and the expert on what he likes and doesn’t like. It is a proven fact that people who have family in regular attendance get better care than those who don’t. Working with staff to make sure your loved one’s needs are met is a skill in itself. While the staff may be generally caring and concerned about their patients, your loved one is one of many for them. Your job is to make sure he doesn’t get lost in the cracks of bureaucracy without alienating the staff.

You continue to be your loved one’s emotional support. One of the reasons caregivers wait to move their loved one to LTC is that they feel they will lose some of the closeness they have at home. In our just published book, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, Nancy, a surviving LBD spouse, explains how it worked just the opposite for her:

I wish I’d placed Del in LTC sooner. I was still with him every day, but I went home in the evening and actually slept well at night and so I was more rested—and patient. With the staff doing all the heavy lifting and hard work, my role became one of wife and companion again. We both loved the change.

If Nancy had waited much longer, Del’s social skills might have declined so that he would not have been able to adjust and enjoy the change.

Read A Caregiver's Guide to Lewy Body Dementia, available at, for more suggestions about caregiving.

Saturday, May 17, 2014

Surviving in Long Term Care

You’ve done your homework. You searched out the very best long term care facility you could find for you loved one. And now he’s there and you aren’t happy. You still think it was the best one you could find. The staff is for the most part caring and thoughtful, if overworked. They know their job. But still, it’s not the same. They do things on their schedule and in their way, not yours. Even in a great facility, there will be problems. It’s never going to be like it was at home. Here are some ways to adapt and make this time more enjoyable.
  • Visit about the same time each day. Within this structure, occasionally come an hour early or stay an hour late, or even pop in for a little while at an odd time. Your loved one will do better with a set routine but staff does better when they don’t know when you may show up.
  • Develop new routines, with activities that both of you enjoy. Your job has changed but it hasn’t gotten any less important. The LTC has become responsible for meeting your loved one physical needs. Your job now is to help your loved one meet emotional, social and intellectual needs. You will find you have more time and energy to do this now too. You can take the time to work a puzzle or read or look at photos or reminisce instead of feeling overwhelmed by the physical chores.
  • Develop rapport with staff. Be more generous with your complements than you are with your complaints. (Remember the 3 positives for every negative rule—it applies to staff too!) Bring gifts. Bribes are often as effective with staff as they are with your loved one!
  • Look for the positives. Why did you choose this facility in the first place? Was it close to home? Did you like the staff? Does it feel comfortable? Do these things still apply? What else can you identify that you like about it? Don’t forget to include things like you are getting more rest, more “me time,” and that your back isn’t hurting from all the lifting.
  • Identify the negatives. Yes, they will be there. Routines that you’ve developed won’t work in LTC. And the LTC will have their own routines that may feel uncomfortable and foreign to you and your loved one. Be willing to speak up and make suggestions or requests when necessary. 
  • Adapt. The negatives most likely aren’t going to go away. And so, how can you adapt? This doesn’t mean giving in. It means finding a way so that both your needs and the LTC’s needs are met. For instance, staff turnover is a big complaint. Even when the staff in the facility stays the same, they usually rotate a lot. “I just get someone trained about what Dad likes and they are gone and I have to start all over.” Try writing up a list of things that need to be done and how your loved one wants them done. Then share it with the charge nurse and make sure each new staff is told about it. Most rooms have a dry erase board and you can leave a note about your list on it. Or even write the most important things right there.
  • Let go. Part of adapting is accepting that you aren’t in charge of everything anymore. One of the few perks of caregiving is being in control. It is seldom something you wanted, but when you have to give it up, it can be awfully difficult to do. Take time to consciously evaluate when you want step in and make changes in your loved one’s care. If it is something that really needs changing, go ahead. If it is just because “that’s not the way we do it,” reconsider. Relax and give this new way a chance. While familiarity is important to your loved one, he also needs peace. When you are upset, so is he.
Read A Caregiver's Guide to Lewy Body Dementia, available at, for more suggestions about caregiving.

Saturday, May 10, 2014

Kinds of Long Term Care

About a year ago this blog discussed way to make your home Lewy friendly (4-5 and 12, 2013). However, even with an accessible home, you will eventually need help. Caregiving, and especially dementia caregiving, is NOT a job that can be done safely alone. More recent blogs have discussed the red flags that warn of the need for help of some kind (4-25-14). If this is an subject you avoid, you aren’t alone. The 4-14-14 blog discussed common resistances that keep caregivers from asking for help.

For most caregivers, the time will eventually come when they will have to consider placement in a long term care facility. The 9-15-12 blog lays out the main reasons for this, adds some warnings and makes some suggestions about choices. Read this blog sooner than later. This week, the blog is about types of long term facilities available and how to choose the right one.

Residential facilities come in several levels of care:

Independent living. This is like having your own apartment, except that it is within a facility that can quickly provide assistance if needed. These apartments are usually in a multi-level of care facility. People often chose this option so that they can migrate to higher levels of care without leaving the friends they’ve made in the facility. Unless you choose to move here as a couple, your loved one would seldom qualify for independent living.

Assisted living. This is the level of care that many LB loved ones would fit into. The units are usually a small suite, with a mini-kitchen, a private bathroom and a bed-livingroom. Although assistance is readily available as needed, a person must be safe to leave alone and able to cope without fulltime help. Wheelchair-bound people will probably qualify, but only if they are still fairly functional. Some facilities encourage spouses to in with the loved one—often at little extra cost. Then, the couple must be able to cope without full-time help.

Memory care. The level of care may be similar to assisted living, but this is usually a locked unit, due to the wandering that many people with dementia tend to do. Loved ones with LBD may not need to be in a locked unit because wandering is not a common LBD symptom. (However, LBD and AD are often mixed and then, all bets are off.) Memory care units may also be equipped to care for people with more advanced dementia, where heavier nursing care is needed.

Skilled nursing care. The level of care is high, essentially round the clock nursing. A loved one who has become bed-ridden would qualify for this level of nursing, as would one who had become so helpless that they could not assist in transferring.

Adult Family Homes. These are usually smaller facilities and each is different. They are often family run with few staff changes, and much less activity than occurs in a larger facility. They may or may not have patients requiring several levels of treatment. These are all things you would need to explore when researching such homes. However, LB loved ones tend to do well in these smaller facilities that have fewer changes and less stimuli—if the home is well run and the staff are caring.

Future blogs will discuss more about when to place and how to make it work once a person has been placed.

For more information, read A Caregiver's Guide to Lewy Body Dementia, available on

Friday, May 2, 2014

Caregiver Help in the Home

Former blogs have discussed the need for help with caregiving—and the caregiver’s resistance to using said help. Caregivers almost universally resist placing their loved one in a residential facility. When they do, it is usually after they’ve exhausted all other options. And after they have also exhausted their own physical resources to the place where they are truly unable to do the physical care any more. Getting the caregiving help you need doesn’t have to mean residential placement. There are other options:

Family and friends. All you generally need at first is a few hours free to go run errands. Often there will be neighbors, family or friends who can sit with your loved one while you are gone. As the need increases, these sources become less useful because they may not have the ability, knowledge or even the inclination to do everything that needs to be done—like helping with toileting or transferring.

Adult day care. These programs can provide social, medical and emotional support for your loved one and some respite for you. They are often a good choice for a caregiver who is still working at an outside job. Many provide transportation as well. It may take a while for acceptance to take place but caregivers often report that their charges like going once it becomes a routine. It often helps to go together at first and then leave your loved one there alone for longer and longer times. Use the checklist on page 176 of the Caregiver’s Guide to Lewy Body Dementia (the Guide) when selecting a program.

In home help. Agencies such as Home Instead and Visiting Angels provide bonded and trained home health care technicians who will come to your home. You can usually set up a schedule that works best for you and your loved one. There are also many independent home health caregivers who do a very good job. However, do be sure to check their references carefully.

Edgar is getting almost too much for me to lift by myself and I know I need help. But he sleeps most of the time. I just hate the idea that except for a half an hour now and then, I will be paying the aide to sit around doing nothing. -- Amy

Some aides will also do light housework during their patient’s down time. This would address Amy’s issue and even help her to catch up on work that often gets put off because of other caregiving duties. Eventually, the time will come when you need round the clock help. This can be quite expensive and caregivers often opt for residential treatment at this time.

Hospice care. Most people don’t call hospice in until their loved one is only weeks or even days from dying. This is a shame because hospice provides wonderful in-home services, including a weekly nurse visit and an aide who helps with bathing several times a week. It is free to anyone who is on Medicare but a person does have to meet certain requirements to qualify. One of those requirements is that a physician must document that the person’s condition is such that they may live only six more months. However, this is a very subjective decision. People have been known to live for years on hospice! Pages 216-222 in the Guide discusses hospice eligibility requirements and much more.

Palliative care. Many hospice organizations offer palliative care (comfort care) which is essentially the same care as that provided for hospice patients for a usually reasonable fee. This is worth checking out. It can often be a good way to start using in-home care.

Future blogs will discuss residential placement.

Read more about caregiving in A Caregiver’s Guide to Lewy Body Dementia, available on