6

Dealing with Professional Caregivers

When I was a young child, ten to be exact, I lost control over my life. I was sent to Switzerland to escape the Nazis and lost my entire family. As an orphan living in a school, I really had no say over much of anything. I had to be grateful that strangers were keeping me safe and fed and that I had a roof over my head, so the idea of being a rebellious teenager just never entered my mind. But when you’ve gone through a period like that, when you finally do gain back control over your life, you tend to hold onto it. I say this to let you know that I fully understand how hard it can be to give up control. And that’s especially true when it involves someone you love who needs all the tender loving care possible.

GETTING HELP EARLY

At the same time, having a loved one with Alzheimer’s is going to mean giving up some control. You might think that you can do it all, but you can’t. You’re going to need all the help you can get, and my advice is the sooner you start reaching out to others, the better. The reason I say this is that having outsiders come into your home is a challenge. You have to learn how to handle this situation and how to make sure that your care recipient is getting the best care. The more advanced the disease, the less able you will be to control the situation. If help arrives when you’re overwhelmed, you’re likely to just hand over control because you physically and mentally can’t take it any more. But if you bring in outside help at an earlier stage, you can integrate this help into your everyday routine. You can find people who will do the best job. You can be “professional” about it. So rather than fight this milestone, rather than say to yourself, “As long as I can handle everything, I’ll feel as close to normal as possible,” I’m advising you to do the reverse. Normalcy isn’t in the cards for you any longer, so trying to hold on to it is counterproductive. The sooner you start to adapt to your new non-normal situation, the better.

Caring for someone with Alzheimer’s is going to sap your reserves of strength and sanity. I don’t care how strong you are, there is no getting around this fact. So rather than risk burnout, begin integrating help as soon as possible. Test the waters. Try out different agencies. Join support groups and try to learn as much as you can about the help available in your area. If there’s a fund-raiser for Alzheimer’s research, attend and meet as many people as you can. Start building your network of sources of help right at the beginning, while you still have the time and the energy.

For example, you may meet someone who has a great in-home caretaker, but the patient has deteriorated so much that he or she is going to a care facility in the near future. Well, in that case, you make sure that this great caretaker is going to come to you next. That may mean that you have to hire this person a few months before you’d planned on doing so. But if that means you’ll get a great caregiver without doing a ton of research and spending hours interviewing people who are wrong for the job, and maybe out of desperation having to settle for someone who is second best, then that will be money well spent.

Or maybe you’ll find someone who has a good caretaker but doesn’t need or can’t afford to keep this caretaker full time. Since the caretaker needs full-time work, there’s a chance that this person will go elsewhere. Perhaps by offering to split this person between the two of you, there’ll be the equivalent of a full-time job and you can both use her services. Or there might be someone who has full-time help who wouldn’t mind taking care of two people for short periods so that you could drop off your care recipient (and pay for the care during that time period, of course) to give yourself a couple of hours a week to do some shopping. So even if you don’t hire anyone, at least nose around and be open to testing the waters. You never know what you may find.

HOW THE PATIENT FEELS

One obstacle you might encounter may come from the Alzheimer’s patient himself. He or she may not want some stranger to be involved in his or her life. Particularly, in the early stages, when the patient is in full control of their faculties much of the time, they’re quite likely not going to want a stranger around. They’re going to want to maintain their independence They won’t want to admit that control over their life is sliding away from them. Such an attitude is fully understandable, and your tendency is going to be to give in, especially if you share this same reluctance. But as we all learned from an Aesop’s fable, the time to stock the pantry is in summer when the food is available, not once winter comes and there’s nothing left to harvest. If you are harried because you can’t cope with your spouse or parent, how easy is it going to be to find help? At that point, you’ll be more likely to make a poor choice. But if you start early enough, even if you do make a mistake, you’ll have time to rectify it.

So just because the person in your care may object to the presence of an outside caregiver, don’t let this be reason enough to stop you. You don’t want to paint too grim a picture of the future for your loved one, that’s understandable, but you have a duty to be realistic. And you know what is likely to happen? The patient who objected so vigorously is going to appreciate the help and not having to bother you with every little thing. People are adverse to change, but given some time to adapt, they’ll understand that change can be a good thing.

NO TIMETABLE

It can be hard to come to grips with the fact that with Alzheimer’s there is no going back or even standing still for very long. There’s no exact timetable either. The person you are caring for could remain stable for some time, or a month from now he or she could be in very bad shape. There’s no road map to follow, so my advice is to make as much progress as you can in terms of getting help while there’s still some daylight left.

You also have to realize that the person with Alzheimer’s is not alone on this journey. It’s not all about the patient; it involves the entire family and especially you as the main caregiver. You’re going to be making plenty of sacrifices, so don’t feel the least bit guilty about doing something for yourself, like setting up some assistance. You have to marshal your forces for this long journey. If you don’t protect your strength, you’ll never make it.

You also have to think of your own health. If your physical condition is weakened, you could develop a serious health problem of your own. This is actually very common among caregivers who tend to neglect their own health. Not only would that be terrible for your sake, this could have a very negative impact on the person you’re caring for. Your mom might have to be sent to a facility long before she otherwise might have been if you’re no longer able to care for her.

I’m not trying to paint an overly bleak picture here. I just know that it is part of human nature to put certain things off, particularly if they’re not all that pleasant and require spending what may be scarce financial resources. However, given the circumstances of Alzheimer’s, it is essential that you overcome your natural reticence and allow yourself to be proactive.

ADJUSTING

Now we come to the meat and potatoes of this chapter, adjusting to having a caregiver in your home. Of course, if you have the right person, it won’t be difficult at all. If you have someone who is experienced in caring for people with Alzheimer’s and who is pleasant to be around, any time you have spent worrying about getting a reliable caregiver will have been for nothing. If that’s what has transpired in your situation, perhaps you can skip reading the rest of this chapter. But, let’s face it, this sort of match rarely goes completely smoothly. If 50 percent of all marriages end in divorce—relationships that started off as loving—it’s far from certain that your relationship with this outside person is going to be flawless. On the other hand, you are not marrying this person, so set your sights a little lower. As long as they do offer you help, and as long as it seems the person you’re caring for is doing okay under their charge, that’s all you really need to expect. If you get more, great, but if you get that minimum, you need to be more accepting. In all probability, this person is not making very much money. (That’s especially true if you hired the caregiver through an agency, which is getting a large cut.) You can’t expect that person to give exactly the type of care you would give because they don’t have a personal connection to the person whom they are tending.

By the way, in case you think that I don’t understand the mentality of someone in this position, I need to inform you that while I was in the orphanage in Switzerland, I earned a diploma in Swiss housekeeping. When I first came to this country, I worked as a housekeeper for seventy-five cents an hour to support myself and my young daughter. As it happened, I remained friends with the couple that first employed me, as I was very grateful to them. But I know what it is like to be a domestic worker, though I also know that cleaning floors is a lot less psychologically tiring than taking care of someone with Alzheimer’s. And that’s something you should appreciate as well.

THE ART OF DIPLOMACY

Your number-one goal with regards to the “outsider” in whom you are trusting the care of your loved one is for your loved one to feel comfortable with and comforted by this person. If you are too demanding or too picky, you will have a difficult time feeling confident when you’re out of the house that this goal is being met. You probably won’t be able to trust what your care recipient says, because he or she might have some difficulty telling what is real and what is not. Your husband might complain bitterly about a caregiver who is perfect in your eyes but is seen as an enemy by your spouse because of her need to keep your loved one from doing things that might cause himself harm. On the other hand, if your loved one can’t remember whether or not he or she was ever served lunch, there’s no way for you to know besides trusting the person you hired.

Of course, these days it is possible to place secret video cameras so that you can see what is taking place, to be viewed either live or recorded for later viewing. My instinct is to tell you not to do that. Frankly, this comes in part from me not being very technically savvy, so I’d be afraid of all the necessary equipment. But I also believe that installing this type of surveillance is indicative of mistrust, which is not a good way to begin such a relationship or to make it work. On the other hand, I have to admit that if it gives you peace of mind, and especially if you’ve had some bad experiences, it’s something to consider.

I would say that having hidden cameras around would be more appropriate if your care recipient has developed a tendency to be mean or act out in inappropriate ways. Such behavior is going to tax the patience of any caregiver. You yourself might be very upset by it from time to time. So, it could be a good idea to make sure that the person you’ve hired is handling such behavior in an appropriate manner. Now, that manner doesn’t have to be exactly the way you would do it, it just can’t be in a way that puts your loved one in harm’s way.

Here’s another personal story that I want to pass on because it shows my philosophy of life. My daughter was getting married. The most famous shop to buy a wedding dress was, at the time, located in Brooklyn, near where my coauthor Pierre lives. After looking at the dresses, we stopped by his house. I had hired a car and driver for the afternoon. When we got to Pierre’s, I invited the driver in to join us for coffee and cake. Later, my daughter asked Pierre whether this was a driver I had used many times. The answer was that I’d never used him before and there was every chance I would never have him drive me again. So why did I not leave him sitting outside in the car? Why do I always make sure that a driver is not going to go hungry if I’m being taken somewhere for a meal, to the point where I will often bring a banana to give the driver just in case he can’t leave his car and get a bite?

It goes back to what I just told you, as a result of my having been a domestic worker. My status may have changed tremendously from those days, but I’m the same person. I certainly wanted to be treated like a person back in those days, and so I never forget to treat everyone around me as if they are complete equals. If a friend had been driving me to Brooklyn, I most certainly would have asked him in, so why not the driver I didn’t know?

What do I get in return for following the golden rule? I can always rely on the people I work with because they never feel as if I’m cheating them. Of course, there are people who don’t care how they’re treated. They have a chip on their shoulder or some other psychological problem, and no matter how nice you are, you are going to regret having had them in your employ, or as neighbors, or sitting next to you on the bus. There are people who will sometimes take advantage of other people, which is why you might choose to install video cameras. On the other hand, the likelihood of needing a security camera is pretty small, and if you treat people well, you’ll usually be afforded the same respect.

Another piece of advice I would give is when you’re interviewing caregivers, make sure that you don’t do all the talking. If you have instructions or want to tell this person all about your mother, you can do that at some later time after you’ve made the decision to engage them. But in an interview, you want to learn as much about the person you’re hiring as you can. The only way to do that is to ask them questions and then—this is the important part—listen carefully to the responses you are given. You can learn a lot about a person that way, but if you’re too wrapped up in what you want to say, you’ll miss both information and vital clues. Keep in mind that a job interview is not a social call where you get to tell this person about all the time and effort you’ve put into taking care of your loved one. The only goal is to try to ascertain whether or not the person in front of you can do a capable job of assisting you in this crucial task.

I would suggest that you write down a set of questions ahead of time so that you remember the important ones. You want to know about their past experience working with people with dementia. You’ll want to ask them if they ever had any incidents with someone in their care. You want to know that if the person they are caring for gets abusive, how they approach and handle such situations. Try to come up with questions that don’t allow for yes or no answers. Try to make the person speak in full sentences so that you really get a picture of them. You can write out little scenarios, such as “If my mom refused to eat lunch, how would you handle it?” By carefully evaluating their response and observing both their verbal and nonverbal signals, you’ll learn a lot about them.

On the other hand, don’t worry too much about their background. It’s likely that this person doesn’t share your background. Their lifestyle may be very different from yours. But that doesn’t have very much to do with whether or not they would make a good caregiver.

When you check their references (and always check, because what good are references if you don’t call those previous employers?), you want to obtain the same type of information as in the interview. Unexpected incidents are almost bound to come up with someone with Alzheimer’s, and there’s no one perfect way to handle these various types of incidents. But you want to have confidence that this person expects them and won’t fly off the handle in reaction to something your care recipient does or says.

Sometimes you just have to be practical. Let’s say your father has taken to saying things that are racist, even though he never did so before dementia hit him. If that’s the case, you are going to have to find someone of his race to take care of him because no matter how thick someone says their skin is, if they are being verbally abused on a daily basis, it’s going to take a toll, and in the long run, they’re not going to be able to give your loved one the proper care. Or, if your father is always making passes at women you hire, then you should seek out a man to take care of him. Occasional inappropriate behavior can be handled, but if it’s constant, it’s going to wear down the patience of anyone who is not a family member (and, of course, even a loving family member’s patience will occasionally wear thin).

If and when you find the perfect (or near-perfect) caregiver, treat this person well. Even if you can’t afford to give them a raise, make sure to bring home little presents, ask them about their family, and do everything in your power to make them feel like they are one of the family, so that they won’t leave you just because someone else offers them a few dollars more per hour. Of course, you may not be able to prevent that from happening, but the better you treat them from the beginning, the more insurance against them leaving you are purchasing with your kind gestures. (And, if you’re not paying a “gem” very much money, don’t advertise to the world how good she is; otherwise, you’ll be advertising to someone else that they should outbid you for her services.)

You also need to be careful about the job description when you first hire someone. Is this person going to be responsible only for the care of the person with Alzheimer’s, or are other more general housekeeping duties part of the job? Give it some thought. Finding someone to help you clean is likely to be far easier than finding a person capable of handing someone with Alzheimer’s. Whatever you do, don’t hire someone intending to ask them to help with other chores without being very up front about it; otherwise, conflicts are sure to arise.

You may also have to be protective with regards to this employee vis-a-vis your other relatives. If this person’s job is only to take care of your mother, say, and your sister comes to visit and starts giving her orders that are not part of the job description, that could cause a serious conflict. So, make sure other relatives understand exactly what this person is supposed to be doing so that no misunderstandings arise.

KEEPING YOUR DISTANCE

I’ve been telling you that it’s good if this caregiver becomes part of the family, and I do agree with that, but be careful about getting too close, too early. You may discover after a month that this person is just not right for the job. Maybe she starts to come late every other day. Or she spends too much time talking on her cell phone. If you’ve gotten too close too fast, you’re going to have a harder time either exerting control or getting rid of her. So, in the early stages of her employment, maintain your status of being the boss. If this person turns out to be someone worthy of being considered a “member of the family,” you can always make relationship changes later on. And that status will be more appreciated if it’s earned than if it’s granted too soon.

In your role as employer, be specific when it comes to instructions. You should definitely have a written list for emergencies—who to call and what to do—but it’s a good idea to write out any other instructions you might have, such as what foods can and cannot be served, when medications are to be given, and so forth. Also, you might want to leave daily written instructions as well, such as when to bathe the patient, though these may eventually be communicated orally once you have full confidence that this person listens to what you tell them. Leave any such lists where they’re easily accessible, not stuffed in a drawer, but out in the open.

There are several advantages to giving the person such a list. First, it will permit you to make sure that you’ve given all the proper instructions. Also, it will help the person you hired not to forget those instructions. A written list is also a “witness” in case of disagreements. This person can’t say to you, “You never told me to do this or that” if there’s a written list to prove otherwise.

INITIALLY DON’T BE A SOFTIE

Once you have an employee, you become a “boss.” You don’t want to act too bossy, but you also don’t want to appear to be a softie because that will encourage this employee to take advantage of you. I’m not saying every employee would, but some might. If you set the stage early on, and if this person knows that you mean business, then those early limits you set should hold. However, if you are always giving in or giving mixed signals, particularly right from the beginning, it will be very hard to regain control. Thus, while you’re getting to know each other, make sure to don yourself with the robes of authority. Hopefully, this is a role that you won’t have to maintain, but being fully in charge initially will be helpful to everybody. Your employee will be less likely to find herself in a situation where the job is going to be taken away from her, and you’ll be less likely to have to go through the process of finding someone to replace her.

Of course, as every parent who employs a nanny or baby sitter to look after their child knows all too well, no matter how good the person you’ve hired is, there will be times when he or she will notify you at the last minute that they can’t come to work. Emergencies happen, so you have to be prepared with a back-up plan. If you prepare for such situations, not only will they not be as traumatic, but they’ll happen less often. That’s just the way fate seems to roll the dice, because if you’re unprepared, foul-ups tend to happen more often than not.

THE DROP-IN CAREGIVER

Up to now, I’ve addressed the issue of a regular-care assistant, but in all likelihood you may also encounter people who come into your home from time to time, such as a physical therapist, a nurse who administers medication, or a social worker. Such visits are a bit like a doctor’s visit. If you’ve been encountering problems of any sort, you’ll want to write down your questions so that when this person is with you, you can get the answers you need. If you think of your questions after this person has left, it doesn’t do you much good.

On the other hand, such specialists have limited time to spend with you, so you don’t want to flood them with questions or complaints that have nothing to do with why they are there. That’s another reason to have a written list of items to discuss, so that you can make sure you’re raising only appropriate issues.

YOU AND THE STAFF AT A FACILITY

If your loved one is in a facility, you’ll come into contact with the caregivers there on a regular basis. As with a hired home caregiver, it’s equally, if not more important, to maintain good relations with facility caregivers and staff members. The reason it could be more important is that most of the time you won’t be on the facility grounds to supervise. Also, if your loved one is in a facility, he or she probably doesn’t have much ability to speak up for him or herself. Finally, someone in the final stages of Alzheimer’s may have some personality disorders that may make them harder to deal with. The people in the facility are of course professionals who do this every day, but it’s not an easy job, and the people who are most closely involved with your loved one—in other words not the medical staff but the aides—are probably not paid very much.

In such situations, you have a dual role. One part of your role is to ascertain that your care recipient is getting the proper care and attention. That means you’re going to have to ask questions and be a bit nosy, which is not always going to make you all that popular. However, since your care recipient won’t be able to communicate very well, if at all, you have to be his or her personal ambassador toward the staff. You have to make the staff see this patient through the lens of the family members who come to visit. So, the nicer and more diplomatic you are, the more little gifts you bring, the more polite you are toward them, the better treatment your loved one is likely to get. It doesn’t matter whether Medicaid, a private insurance company, or your bank account is paying, what you can offer when you’re there is another type of currency that can have a lot of value.

Don’t forget the staff that’s on duty during the times you’re not there, particularly the night staff. Patients with Alzheimer’s are often restless at night, so being on night duty is hardly a cushy job. Make sure that whatever gifts you provide are shared among all the shifts. If you bake cookies, make two batches, one to put out for those workers who are there when you visit and one for the next shift.

By the way, I’d also recommend making friends with the families of other residents in the facility. These people can act as your eyes and ears when you’re not around, and you can do the same for them. This is particularly important if your loved one has a roommate, but even the families of other residents can be a good resource.

YOU AND YOUR CARE RECIPIENT’S DOCTOR

Because of the insurance situation in our country, whether yours is a private insurance fund, Medicare, or a combination of the two that pay for your care recipient’s medical care, doctors today are forced to manage their time very carefully. Your job, therefore, is to get the most out of each doctor’s visit, knowing that you usually cannot expect to get everything you want.

The first time your relationship with your care recipient’s doctor will affect you is right at the beginning of the process of diagnosing Alzheimer’s. It is vital that Alzheimer’s be diagnosed as early as possible so that treatment can begin. However, figuring out what may be affecting an organ as complicated as the brain is time-consuming, and, if your doctor is a primary care physician, he or she is not a specialist in matters of brain functioning. So, no matter how much you and your care recipient love and trust this doctor, you have to consider from the very beginning that you might have to go elsewhere for medical attention, i.e. to a doctor who specializes in this area. (See Chapter 8 for a list of the type of specialists that treat Alzheimer’s.) The truth is that more than 90 percent of Alzheimer’s cases are not diagnosed as soon as they could be, so in the early stages, you are fighting an uphill battle to obtain the correct diagnosis, which, considering it is one you don’t want to hear, will not seem like something you’ll want to push for. And here’s another factor: With more and more people reaching the ages when Alzheimer’s is most prevalent, the medical world is going to have a hard time keeping up with the demand for diagnosis and treatment.

Even a specialist can allocate only so much time to you, so you must be fully prepared for each visit. You have to have as much down in writing as possible, including all the various changes in symptoms and behaviors that you’ve noticed since the last visit, a complete list of medications (as you might be seeing more than one doctor), and any reactions to those medications that have appeared. If you can send this list to the specialist ahead of time, great; if not, have it handy to give to the doctor. (Whether you send it ahead of time, or give it to the doctor, there’s no insuring that the doctor will give it more than a cursory glance. That may be frustrating, but since the preparation of that list will help you ask the right questions, it’s still worth doing.)

Making the most of the answers you do get is also going to present you with a hurdle. You might become upset at the doctor’s first answer, which will keep you from paying attention to what else the doctor has to say. Or, the doctor’s answer may prompt more questions, again distracting you. Thus, you have to have a way of recording the doctor’s responses. It could be with pen and paper or on something more high-tech. It’s good to have a way to retrieve this information later. (If you can bring a relative or friend along with you, that’s all the better, as two sets of ears will make it more likely that you get everything down pat. You could even give this other person the main job of writing everything down, leaving you free to ask questions.)

On the one hand, you have to respect the doctor’s time, but you have to balance that with the needs of your care recipient, so while you can’t expect much chitchat, you do have to make sure that you have sufficient time to ask your most important questions. That’s why your questions and concerns need to be written on a list and ranked according to importance. Also, keep in mind that you’ll have to do this while trying to keep your care recipient as calm as possible in what may be a very upsetting situation for him or her. Let me repeat, if there is any way that you can bring along someone to help, do so. You may be able to handle most caregiving duties on your own, but this is one situation where the more attention you can give to communicating with the doctor, the better.

Just because doctors have time constraints doesn’t mean they have an excuse not to give your care recipient the attention he or she deserves. So, don’t be afraid of changing physicians if you think your loved one needs better treatment. However, this decision needs to be balanced by the level of expertise the doctor has. The better the doctor, the more patients he or she will have, and, thus, the more pressed for time he or she is likely to be. So if you’ve managed to get the best doctor for Alzheimer’s treatment in your vicinity to take your care recipient on as a patient, you might end up having to give up more control than you would like. Of course, sometimes the very best physicians also have the best bedside manners, so don’t assume that you’ll be getting less than his or her full attention, because that might not be the case.

Also, don’t ignore the rest of the doctor’s staff. It could be that there are people on staff who have a lot to offer you, so talk to them and learn what you can. Having an ally in a doctor’s office can pay off in the long run. Some nurses and other staff people may have more practical knowledge and be able to offer better advice than even the doctor.

What this chapter shows is that you face a dichotomy. On the one hand, you need help, but on the other, getting this help is going to cause you more work and require an additional skill set or two. What you need to be convinced of is that in the long run it’s worth the effort. You’re in this for the long haul, and so the preparations you make in the beginning to get the best help will definitely pay off in the end.