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.

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 LBDtools.com, for more suggestions about caregiving.

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 LBDtools.com, for more suggestions about caregiving.

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 LBDtools.com

Residential Placement--Without Guilt

Twin issues make it likely that eventually most LBD caregivers will need to consider placing their loved one in a residential facility. First, LBD is a progressive disease. No matter how dedicated you work to reduce stress and do other things to keep the symptoms mild and the acting-out minimal, it WILL get worse, with acting-out being the norm rather than not. Mobility may decrease as well. 

The second issue is your own health. Statistically, dementia caregivers are at high risk for illness and other health issues such as bad backs. LBD caregivers are at even higher risk. Either of these or, often, the two together can make the need for residential care a reality. Here are some areas of concern:

1.      Promises. The ideal way to prepare for this eventually is to start the planning early in your LBD journey while your loved one can still participate. But even if you don’t do that, be careful not to make promises you can’t keep. In our book, we talk about how Jim promised Annie he’d keep her at home. When he couldn’t keep his promise, Annie never forgave him. With AD, she might not have remembered the promise, or even Jim. But Annie had LBD, and she did remember. And so if you do make such promises, be sure to ALWAYS add, “as long as it is safe.”

2.       Stimuli. When looking for the ideal home, remember that your loved one is extremely sensitive to almost any kind of stimuli—too many people, bright lights, too much activity, etc.  Joy Walker, in her book, Three Years and Thirteen Dumpsters, tells of how she thought she’d chosen a wonderful place with caring staff for her father. But it was too big—too many people were coming and going, too much was happening and it overwhelmed her father and caused him to act out. When she moved him to a smaller home, with only a few residents, he did much better.

3.      Location. The closer the place is to your home, the more you will be able to have quality time with your loved one. You will be able to be there for shorter periods at all times of the day instead of just staying there for hours even if he is asleep and missing other times when he is awake. Also the more you will be able to take care of your own needs. For instance, you will be able to slip home for a couple of hours for a reviving nap, or take those hours to go out to lunch with friends.

4.      Drugs. Know the facility’s policy about drugs. You want to know that those drugs that are unsafe for your loved one will not be used and that the staff is trained in ways to use environment, behavior management and stress reduction to decrease symptoms before resorting to drugs.

5.      Interviews. Make visits, maybe even take your loved one there for a meal. Tour the facility. Interview staff. Our book includes things to look for and questions to ask. You can also find many other question lists on the internet at sites like Cargiver.org.

6.      Guilt. Many caregivers feel guilty when they can no longer care for their loved one at home. Don’t. Let the guilt go and move on. You are still the most important person in your loved one’s life. It’s just that your job description is changing. You may no longer provide physical care, but you are still your loved one’s emotional support and main source of stability. Besides, your guilt becomes stress for your loved one, like any other negative feeling they pick up and internalize.

By the way, expect to discover that after a few months, you will feel that you are an even better caregiver for your loved one. Now you have the energy to give quality time. Now, your health is better and you can focus on more than just making it through one more day. Now you can enjoy your loved one, and he you. Nancy put it this way, “When Del was at home, I was the caregiver and he was my patient. That’s all we had the energy for. Now, with Del in a facility, I got my marriage back. Someone else does the hard, time-consuming physical stuff and I can go back to being a wife, where being supportive and loving is my major focus.