3

You Get to Have a Life, Too

I don’t want to appear glib with the title of this chapter. I fully understand that each caregiver’s circumstances are different. In one case you might have a daughter taking care of her mother, but she has three siblings who live nearby and can help out, while in another case you have a wife taking care of her husband, without relatives nearby. So in each case, the “life” that I want you to have is going to be different. But my overall point remains the same: that to whatever degree possible, every caregiver must think of him or herself as well as the person who is in their care.

Alzheimer’s is a terrible disease, but it mustn’t claim two victims. As a caregiver, you do give up a lot, but you don’t have to give up everything. If you do, you and your care recipient will end up paying the price because if you push yourself too much, if you don’t allow yourself some time off, you just won’t have the strength—emotional, psychological, and physical—to keep up your part. You’ll fall victim to what’s been dubbed “Caregiver Burnout.”

Caregiver Burnout is not just a phrase but something that experts in the field see all the time. Sometimes the symptoms are physical, but more often they’re mental, with depression being a common one. If you’re lucky, the doctor overseeing your care recipient will also be asking you questions and making sure that you’re not succumbing to Caregiver Burnout. If this is not the case, then you have to be alert for ways in which you’ve changed since taking on these duties and seek additional help if you need it.

Let me illustrate the negative effect Caregiver Burnout has on patient care with one example. Often people with mid- or late-stage dementia become argumentative. Since they’re not in their right mind, you can’t reason with them. Instead, you have to keep a smile on your face and try to divert them from whatever subject they’re arguing about. That’s not an easy thing to do at any time, but it will be almost impossible if your nerves are badly frayed. Thus, you need to take care of your own needs as much as possible so that you can give the best care possible.

Don’t try to manage everything entirely on your own. I’ve already written about getting family to help, but outside help is also probably available, even in these times of budget cuts. Many localities have agencies that can send someone to your home to give you assistance. On the NeedyMeds website alone (www.needymeds.org/free_clinics.taf), you’ll find a list of over 11,000 clinics that offer either free or low-cost help. (For more resources, see the Appendix.) But to get help you have to accept the fact that you need all the help you can get. In making that decision, always bear in mind that if you wind up with burnout, you’ll be unable to care for your loved one.

Before I go any further, I know that not everyone reading this book is computer literate and that not everyone has a computer. That’s particularly true of seniors, like me. (I rely on my co-author Pierre to do all my research on the Internet.) While this situation presents an obstacle, it’s certainly not an impossible one to overcome. There’s probably somebody you know—a relative, neighbor, or friend—who can help you do this type of research, and if not, then there are many other places to turn, such as your public library, the office staff of your place of worship, or a social worker at a nearby hospital. You could potentially even hire a local teen who has a computer and could help you out for a modest sum. In fact, if you called a local high school or college, you might even get some young person to volunteer.

Permit me to expand on this last little nugget of advice I just gave because it illustrates the overall point I am trying to make in this chapter. It would take a little chutzpah, the Jewish word for being gutsy, to start calling local schools in a search to find a teen who would volunteer to help you out. In a sense, it would seem like asking for charity for yourself, and that’s a little embarrassing. Also, it might take quite a few phone calls before you find the right person to assist you. Or you might make twenty-five calls, only to discover that this particular road was a dead end. Therefore, the most important factor to persuade you to go through a process like this is the belief that you are deserving of this help, that you get to have a life, too. However, if your belief is halfhearted, you are not likely to succeed.

Bear in mind that I’ve given you a very specific example, but there are actually many ways of finding someone to help you navigate the Internet. I present more about support groups in Chapter 10, but you should definitely become an active member of one, and raising this issue with that group will certainly lead you in the right direction, which might not be a local high school at all. But I do know that there are high schools that make a commitment to help older citizens in the community, so it’s possible that even if you were searching blindly, without any guidance, your search would lead you to a volunteer.

I wish I had the time to take each one of you by the hand and guide you through your life to make it better. Since I don’t, I wrote this book, offering you my general advice, and helping you to believe that your need to have a life is a very important part of what I have to offer. When I say “believe,” I don’t just mean for you to say “I get it” and put it out of your mind. I mean for you to take an active role in making sure that you do what it takes to give yourself as much of a life as possible.

BUT THERE’S NO TIME

How many of you said that to yourself as you read the title to this section? As I said, each of you has different circumstances, so statements like, “Of course, there’s time” will mean something different to each of you. But while I can’t tell you exactly how much time is available to you, I can do something else: I can help you to figure out how to spend your time. I want you to write down how you spend your time over the course of the next two or three days so that you get a typical breakdown of each day. Write down everything you do and how long it takes. Then be honest with yourself and analyze where you could carve out the time for something as important as making a life for yourself. I bet there are plenty of windows of opportunity, though maybe you’ll have to be a little creative.

Here’s an example of what I mean by being creative: Let’s say it takes you half an hour to prepare dinner each night. On the one hand, you’re busy, but it’s also a task that doesn’t take up all of your attention. You might spend the extra time the cooking process allows by talking on the phone with a friend. But since you need your hands to cook, you might need some simple equipment, like a speakerphone, or a portable or cell phone that would allow you to plug a little headset into it so you could stick the phone in your pocket and have both hands free to prepare the meal. If you did that, suddenly the time you use for one job could also be used to do something for yourself, like catching up with a friend. There are other things that you could do while cooking. You could listen to music. You could listen to a book on tape. You could listen to the news, or, if you have a small TV in the kitchen, watch your favorite show.

So, first, spend several days keeping this diary in order to identify where you might make some time for yourself. You’ll also need to spot blocks of time on your list that may appear to be full, but that actually offer the potential for you to add some extra pleasure to them. Then you have to figure out how to make it all work. Yes, it will take some effort; let me reiterate that you can find the time to improve the quality of your life, but you have to have the incentive to do so. To have that incentive, you have to truly believe that you are deserving of a life.

Now why might you not believe that? The biggest reason is that you have this burden. After a while, the responsibilities of taking care of someone who requires so much of your time and energy can sap you of resources. The days pile up and the entire process starts to overwhelm you. As your energy drains away, you start to forget that you’re “you” and not just a caregiver. Your sense of worth begins to evaporate and your self-esteem begins to spiral downward. It’s not surprising that you could become overwhelmed by your situation. But understand, it doesn’t have to be this way.

I’m sure you know the word “momentum.” People who follow sports are probably the most familiar with it because if you watch football or basketball games, you will often witness how a single play can change the momentum of the game, so that the team that seemed to be losing badly suddenly turns everything around and catches up. If your life is spiraling downward, your job is to break the momentum of that spiral so that you can start improving things. Just like with sporting events, it doesn’t have to take much to get things going in the right direction.

Let’s say that you placed an announcement in the bulletin of your house of worship that you were looking for someone to volunteer a few hours a week to help you take care of your husband, who has Alzheimer’s. And, let’s say that one of the members of the congregation, a high school student looking to bolster her applications for college with some volunteer activities, calls you up and offers her services. Suddenly, for two afternoons a week, you’ll have a cheery young person around brightening up the place. And, while she takes your husband out for a walk, you’ll be free to do something that you really want to be doing. (Whatever you do, don’t use this free time for chores. Remember, this chapter is about making your life better.)

Of course, you could place that ad and receive no response at all. Here’s my philosophy about that. My favorite animal is the turtle. I actually have hundreds of them. None are real, but once word got out that I like turtles, people started giving me little turtles made out of this or that material. In any case, the reason I like turtles is because they’re living proof that if you want to get anywhere, you have to stick your neck out. A turtle is safe when tucked inside its shell, but in order to live, it has to move about. I see one of my jobs in life as getting people to break out of their shells and take risks. While there are no guarantees when you take a risk, there’s also little chance of changing the momentum of your life if you don’t.

Here’s another key word with regard to this chapter: incentive. In order for you to get up the gumption to take a risk, like calling around looking for a young volunteer, you need a good incentive. For the turtle, it’s the need to look for food or a mate. For you, it can’t be just to have a few hours to do your chores. Chores need to be done and you’ll almost always find the time to do them. They come with their own built-in incentive: necessity. However, engaging in a hobby, reading the latest book by your favorite author, spending an hour at the gym working up a sweat, all these can be put off, and probably often are. One reason may be that you don’t feel they’re all that important. You look at the things you could do for yourself as luxuries, not necessities. You need to change your attitude so that you’ll have the incentive to make the changes in your life that will allow you to obtain the added pleasure I’m advocating.

Just as you need food to keep your physical body going, you need psychic nourishment to replenish your mental energy levels in order to keep everything humming along. That nourishment comes in the form of things that you do for yourself that are pleasurable and stimulating. I’ve said it before but it bears repeating. I’m not talking about watching TV or reading a trashy novel. I’m not saying these activities are off-limits, but they’re like junk food. They may be tasty at the time you enjoy them, but they don’t provide you with the nourishment you need. They’re full of empty calories.

What I want you to do is to exercise your mind. In the same way exercise makes your body stronger, exercising your brain makes your mental state stronger. And the stronger your mental state, the better you’ll be able to cope with all that you face on a day-to-day basis. Taking care of someone with dementia saps your psychic energy. You need to find ways to improve your ability to cope with this burden and not allow it to force you into being its slave. You have to become stronger, and the only way to do that is to make the time to do things that will give you the mental and psychological strength you need.

Let me offer another example: puzzles. There are word-hunting puzzles where you stare at the page trying to find the words that are hidden among the letters. Mindless. Then there are crossword puzzles where you really have to think in order to find the answers. They force you to use your brain, and by exercising your brain you make it stronger, and this helps you to be more resistant to the rigors of caring for someone with Alzheimer’s.

For some of you, what I’m recommending is going to pose quite a challenge, and I understand that. You might find that the path of least resistance is to keep playing the martyr, to suffer through every day, complaining bitterly about your terrible burden. My suggestions are certainly not going to remove that burden. But let’s put an image on that burden. Let’s say that for your job, you were forced to strap a thirty-pound weight to your back. At the end of the day, when you finally got home, the path of least resistance would be to say, “I’m exhausted” and lie down. However, if you did that, the next day would be just as hard. But if instead you went to the gym and developed stronger muscles, after a time those thirty pounds would seem much lighter.

Like with physical exercise, you have to do this intellectual “something for yourself” regularly. A doctor friend told me that he makes sure to do one thing for himself every day. The path of least resistance might be to put off doing this one thing for yourself, so you have to make a routine out of it. People who go to the gym regularly often have a hard time getting out the door of the gym following a workout, but they’re always glad they did when they get back home. You, too, may need to put some extra effort into doing this one thing for yourself, but you’ll also reap the rewards.

For those of you who are saying, “But, Dr. Ruth, life is so hard as it is and you want me to make it even harder,” I have this to say: I am not telling you to do something that will make you miserable. If you like to paint, I want you to paint a picture. If you like to sew, I want you to make yourself a new dress. If you like mental challenges, then do a complicated crossword puzzle. Or, go online and play chess against an opponent. The hard part is making the time, not deciding whatever it is you are going to do with this time. Your mind needs variety. If all you are doing is working, your mind will revolt and make life even harder. You have to reward it now and then with some intellectual stimulation.

ASAP

I’m sure there are many people who are going to read the above sections, say to themselves, “Dr. Ruth is right, I have to get a life,” and then not do a thing about it. They’ll promise themselves that they’ll get to it as soon as … well, you fill in the excuse. It’s like the diet that you’re always starting tomorrow—it never gets anywhere.

Usually, you see the initials ASAP (as soon as possible) stamped on business documents by a boss who wants a job done right away. But you already have so many jobs, there’s a good chance that this program to get a life will never get started, which is why I want you to stop dawdling and get to work on it ASAP. I’ve given you a very simple way to begin. All you need to do is get a piece of paper, a pen, and a watch and begin writing down how you are using your time. If you’re making the bed, record how long it takes, and also write down when you do it. Do the same with your entire day, and do this for at least two days, though a day or two more might produce a better indication. Now, how hard is it to do that?

Of course, for this diary to be of use, you have to be both complete and honest. If it appears that you’re not really as busy as you thought you were, don’t start stretching out how long it takes you to do a task. If you see that you spend two, three, or more hours a day watching TV, don’t omit that from your diary, even if you’re not proud of it. If it is apparent that your day is not as full as it seemed to be, allow yourself to accept the fact that you have been wasting time and promise yourself that from now on you’re going to figure out how to put those precious minutes and hours to better use. If those days with empty stretches seemed interminable, remember that it was in part because any time you wasted on doing something mindless wasn’t really satisfying. You’ll discover that when you’re using that time to do something really interesting, your days will seem to move by much quicker.

Of course, if you really have been very busy, and empty slots of time are just not that obvious, the next step will be to examine this diary, looking for holes where you could substitute activities that you could be doing for yourself. Again, this is not a major chore I’m urging you to do. It will probably take you less than half an hour and you might even find it fascinating. Remember, there is nothing on this earth more precious than the time we have here, as it’s ultimately limited. So looking at how you use your time and figuring out how to maximize its use … well, it’s like the opposite of paying bills, because every second you retrieve from the waste pile goes right into your pocket.

ALONE TIME AND TOGETHER TIME

I don’t want to leave the impression that time for yourself necessarily means time away from the person who is under your care. If you enjoy some outdoor physical activity, like running or playing tennis, then yes, you can’t do that with your care recipient at your side. But let’s say you greatly admire Impressionist paintings; you could look at a book filled with the paintings of Monet and Cézanne together with the person under your care. Depending on what stage of Alzheimer’s your care recipient has reached, you might even be able to visit a museum together. (I saw a PBS special that showed how important art can be to people with Alzheimer’s. Yes, they’ve lost many mental abilities, but it seems that part of the brain that appreciates art remains intact, so looking at art might be a pastime that you can still share.)

As I’ve said, you’re going to need to exercise some creativity to carve out time for yourself, and in order to do that you may have to figure out ways of doing things for yourself while you’re also watching over your mother or father. If a particular activity also gives them pleasure, that’s wonderful and you’ll be able to share the experience, even if your reaction to the experience is a little different than theirs.

By the way, I’ve put down TV-watching a fair number of times already, but characterizing watching TV as a waste of time is really only true if you’re watching commercial television. There are certainly some wonderful, educational, stimulating shows on public television. You can also rent programs that are quite educational and designed to teach you some subject. The person you’re caring for perhaps won’t understand what you are watching, but there’s every chance he or she doesn’t understand what’s going on if you’re watching a silly sitcom either. But having you in the same room, and having some stimulation coming from the TV, may be quite satisfying in and of itself.

Of course, these days there is so much information to soak up from the Internet. If you have a tablet (like an iPad) or laptop, you can be sitting right next to your father and still be connected. You can even take courses that way. It’s also possible to have what is on your computer shown on a large screen TV. That way, you can move around, do something useful like help your father to eat his lunch, and also keep an eye on the TV, which is offering your brain some nourishment.

How much your care recipient understands of all this will depend at what stage she is. Let’s say you were watching a show that was teaching you how to sketch. Your mother might not fully understand what is being said, but the demonstrations taking place on screen might give her a lot of pleasure. Or, if you have an audiobook playing in the background, she may not fully be able to understand the story, forgetting what happened a few moments ago, but she might still appreciate hearing the stream of words. You have to experiment a bit. If your care recipient becomes nervous and upset when an audiobook is played aloud, then that activity won’t be possible to do together. But it might be possible for you to sit there with your mother, stroking her hair or gently rocking with your arm around her while listening to a book via an iPod in your pocket and an earphone in one ear. Many people with dementia take great comfort having someone near them, but you don’t necessarily have to be fully involved when you are with them; you just have to be there.

Of course, any plans you have made to take part in activities together may wind up being altered at the last minute if there is a change in your care recipient’s mental or physical state. So, while I would encourage you to try to engage in some activities that fulfill your needs together, you still need to find moments when you can do things by yourself so that your enjoyment isn’t always hanging by a thread. Again, the more you can do for yourself, the more you will be able to do for the person for whom you’re caring—and so you’ll actually be doing both of you a favor.

GOING TO WORK

You might not think of going to work as an activity you do for yourself, but it can be. First of all, I would hope you get some satisfaction from doing your job, whatever it is. If you work with other people, going to work can be a good opportunity to socialize. I’d say even if all you made, financially speaking, was just enough to cover the costs of transportation and paying someone to look after your care recipient, keeping your day job might be well worth it. My doctor friend wanted to retire to take care of his wife and I talked him out of it. He’s very grateful to me for doing so.

If you’re retired, assuming you can find the time or money to hire a replacement for yourself, volunteering outside of your home could be a good substitute. Let’s say that your local school needs volunteers to tutor children after school hours. Being around some young people two or three afternoons a week might really pick up your spirits.

GOING TO THE DOCTOR

Of course, the most important thing you can do for yourself is to take care of your own health. Every report on caregivers shows that most don’t do a good job of staying healthy. They’ll take the person they’re caring for to the doctor but won’t go themselves. They literally are putting their lives on the line, because by ignoring symptoms, they end up with serious illnesses. Thus, making sure that you take care of your physical health is priority number one, for your sake, for the person you’re taking care of, and probably for the rest of your family, because if you get sick and can no longer act as caregiver, someone else will have to step up to the plate, maybe having now to care for two people.

Saying the phrase “Get a life” to someone can be a pejorative. It’s often said to a busybody who is sticking his nose into someone else’s business. I hope you understand that I’m not being a busybody myself when I tell you to “Get a life.” If I didn’t fully appreciate how hard it is to be a caregiver to someone with Alzheimer’s before writing this book, I certainly do now. But my research also proved to me how important it is for caregivers not to become completely swallowed up in their role. So, please take some steps, today, to carve out some time for your life, and always remember the importance of caring for yourself and of seeing a doctor regularly to protect your own health.