4

When You’re Taking Care of Your Spouse

If you’re a caregiver and the person with Alzheimer’s is your spouse, the nature of your burden is different. (For those of you whose “spouse” is a gay partner, see more specific information that applies to you at the end of this chapter.) In all likelihood, you’ve spent decades living side by side. You’ve been companions, lovers, and, hopefully, even best friends. You’ve probably shared the duties and joys of parenthood. Your lives are completely intertwined, and now one of you is unraveling right in front of the other.

I always tell couples how important communication is in a relationship, and that advice is even more important to a couple being torn apart by Alzheimer’s, at least during the early stages when communication is still possible.

I know that you’re both going to be very afraid of the future, and because of that fear, and because talking about the future will raise all sorts of emotions and probably be very sad, you may both avoid the subject, preferring to live for the moment, trying not to spoil whatever pleasure the two of you can have as a couple. I’m not recommending that you talk about your future together all the time. But it is vital that you have at least one in-depth conversation on this subject. Whether or not you can settle every question that is bound to arise in one long talk, you should at least raise all the important issues having to do with finances, institutionalization, and end-of-life matters. At some point, sooner rather than later, I would go one step further and say that the results of this conversation should be written down and signed by both parties. I’m not talking about a legal document, although some legal papers will have to be signed (but those will have to be prepared by a lawyer). No, here I’m talking about the simple agreement the two of you make so that the caregiver and other family members will know, without a doubt, what the spouse with Alzheimer’s wished for when he or she remained of sound mind.

I am certain that the spouse headed down the road of Alzheimer’s is going to want to ease the burden of his or her partner as much as possible. You both know what’s ahead, at least in general terms, and if you love each other, you’re not going to want either party to be laden with guilt, but that guilt will surely appear if you don’t iron out your future ahead of time.

DENIAL

Of course, you can’t have a heart-to-heart talk about your future if one or both of you are in denial. Not wanting to face the truth is completely understandable, and you don’t have to face it on a daily basis while the spouse with Alzheimer’s is still in the early stages. But it’s also something you can’t avoid. I read a blog post from a primary care physician who treated people with Alzheimer’s but could not see it developing in his own wife. It was his daughter who made the diagnosis. And, despite his having tried to help his patients cope, he found it very difficult to “walk the walk” for himself.

I know that I can be stubborn, but if enough people, or the right people, tell me I am making a mistake, I listen. When you’re in denial about something that you think affects only you, it’s possible to drift along for quite a while in that state of denial. But if others are telling you that you are making a mistake and if whatever it is seems obvious to the world and you refuse to listen, then you have to stop yourself. You have to have a heart-to-heart talk with yourself, and then look the problem, whatever it is, in the eye and admit that it is there. Only then will you be able to get the help you obviously (to everyone else) need. Only when you accept the truth will you be able to have an intelligent, rational conversation with your spouse.

MOVING YOUR SPOUSE TO A FACILITY

Let’s start with the hardest topic—making the decision about a facility. As the disease has progressed, you’ve been taking care of your spouse at home because you want to make sure that he or she is getting the best treatment possible, including your loving touch. But in the later stages of the disease, you might not be able to provide the type of care someone with advanced Alzheimer’s requires. In a good facility, people with Alzheimer’s will socialize in ways that may be more satisfying than being with you. Also, facilities often provide special classes that will provide stimulation that you can’t offer. Even though it may be difficult, put in the effort to find the best available facility, rather than force your loved one to stay home with you if that’s not the optimum situation.

If you’re older, you’re probably having to fight some health battles of your own, making it that much harder to be a caregiver. The burden is going to be a very tough one. Your spouse wouldn’t want to see you suffer, especially on their account. That’s why it is vital that your spouse gives you permission to be sent to a facility at a certain point before you’re over your head with caregiving duties. I’m not saying that you won’t feel terrible and racked by guilt, but if your spouse has made you promise that you’ll do this, it will be a lot easier to make such a decision knowing that the choice doesn’t rest entirely on your shoulders. (Admittedly, I’m ignoring the financial side of this issue, as the costs of being in a good facility may be out of reach for some, which I fully understand.)

If you’ve been equal partners through life, then you have to be equal partners when it comes to making tough decisions. Of course, if your spouse is already not mentally capable of making decisions, then the decision is yours. But just as most people obey the funeral arrangement wishes of a person who has passed away, you should heed the wishes (if any were expressed) of your spouse if your spouse expressed them while still capable of thinking clearly. The choice to go to a facility is an important example of this. Of course, he or she will never really know whether or not you complied with their wish, as they won’t remember it, but that’s not the point. The point is that when your spouse was of sound mind, he or she didn’t want to see you overburdened by having to handle responsibilities that were more than you could handle.

I understand that you want to continue to take care of a spouse right up until you reach your limits, but once you hit that wall, it’s important not to stubbornly resist. You have nothing to feel guilty about, especially if your spouse has given you full permission to find them care outside of your home. Since there’s no real reason for you to feel guilty, you needn’t suffer.

Will you feel terribly guilty during the first weeks when your spouse is no longer in your care? Most probably you will. Having your loved one in a facility will not relieve you of your burden. In fact, for some people, it is actually worse. But when the time comes when you can no longer offer the care that your loved one needs, you must take this step. You wouldn’t try to perform surgery on a sick spouse who required it, would you? Well, if twenty-four-hour special care is required, you must admit that you’re not up to that task, either.

Naturally, you’ll want to visit as often as possible, though getting there may be quite difficult, particularly if you no longer drive. In deciding which facility to use, ease of access should be an important consideration. But you will also feel very relieved, and you have to tell yourself that no matter how guilty you feel, you actually don’t have any reason to feel that way. You did the best you could, and now your spouse is no longer in a state where he or she can stay at home.

Your marriage vows probably included the phrase “in sickness and in health.” But Alzheimer’s pushes the limits of that vow beyond anyone’s endurance. When your spouse’s mind and personality are so severely altered, and when tending to their safety, and sometimes even yours, goes beyond your capabilities, it’s time to end your duties as a day-to-day caregiver. However, it’s helpful to keep in mind that you will continue to oversee your spouse’s care in a facility, so you’ll still be heavily involved in his or her life.

YOUR CHILDREN

One of the reasons that I advised you to write down and sign the game plan you devise is not just because it will make you, the spouse, more at ease (though it will). Assuming you have children, such a document may play a vital role is keeping family friction to a minimum. If, when the time comes to send your spouse to a facility, one or more of your grown children objects, being able to prove that you are actually carrying out Mom or Dad’s wishes can keep the conflict level low.

This is especially true in the case of blended families. If your spouse was divorced, then his or her natural children may feel that they have more say-so than you do. Of course, if you’re the one devoting all of your time and energy to caregiving, that’s not true. And, even if they really do a fair share of helping, most of the burden is still on your shoulders. Being able to show them a letter signed when your spouse was still of sound mind might avoid, or at least lessen, some nasty arguments.

I’m not one of those in favor of prenuptial agreements, though I can see their utility in some cases. When you marry, it really is in the hopes of being united for life. But Alzheimer’s is a unique disease, considering both the severity of the symptoms and the duration of a patient’s survival, so being prepared with written instructions just makes good sense, particularly if by doing so you can make the later stages a little less contentious.

YOUR RELATIONSHIP

Retired Supreme Court Justice Sandra Day O’Connor’s husband has Alzheimer’s and is in a facility where he found a new girlfriend. Justice O’Connor has said she is happy for him, given that he no longer remembers her. It turns out that this is a common occurrence, and it is certainly one of the many oddities of this disease. I bring this up because it illustrates the predicament that you find yourself in. You want to remain faithful, as part of the marriage vow is “til death do us part,” but your spouse likely no longer has any idea that your marriage ever took place.

Your wedding anniversary arrives, and with whom do you celebrate it? Is it sadder to drink a toast by yourself or not to mark the occasion at all? Your world is turned upside down because you still have a spouse, and yet at the same time the spouse you knew has vanished.

There is no doubt in my mind that Justice O’Connor has chosen the right attitude. Jealousy has no place in the world of Alzheimer’s. But what about the other half of this marriage? Should you be willing to find a new person to fill the void in your life?

Before you answer that question, I want you to separate the rest of the world from yourself. In other words, it doesn’t matter what anybody else thinks. The decision to bring someone new into your life while your spouse is still alive is entirely yours. Understandably, the people who are potentially going to have the biggest problem with this are your children, if you have any. Your spouse is their mom or dad, and the idea that you are going to “abandon” your partner probably won’t sit well with them. To that, I say, “C’est la vie”—that’s life. Since there is no way of telling how long your spouse will live—he or she may even outlive you—the changes brought about to your marriage by Alzheimer’s shouldn’t condemn you to a life of loneliness, and no one, not even your children, should hold it against you.

I’m not saying that finding a new partner is something you should prioritize. But nor is it something you should necessarily avoid. It all depends on what makes you feel best. Though it’s not your spouse’s fault, you’ve been abandoned. If you need the companionship, the love, and yes, the sexual gratification of a relationship, then by all means seek one out. You shouldn’t have to give up such important assets, especially after all you’ve gone through, particularly because of other people’s opinions.

Sometimes, grown children can be very vocal in their objections. This happens to widows and widowers too, which goes to show you that the children’s reaction is far more emotional than rational. There are parents of teens who give up much or all of their sex life because their children are around and they don’t feel they have enough privacy. Such parents are giving up way too much of their lives, and their children don’t even realize it, and so don’t appreciate this “sacrifice.” Children—of any age—may be uncomfortable with their parents having sexual needs, but that doesn’t mean they have veto power. The same goes for someone in a situation where their spouse is no longer available to them because of Alzheimer’s.

I am not saying that anyone whose spouse has some terrible disease that makes it impossible for them to have sex has my permission to go out and have sex with somebody else. Alzheimer’s is much different. If someone’s brain has changed so that they don’t know you exist, and if your potential relationship will have no effect on them and won’t cause them any jealousy, then you’re entitled to a Get Out Of Jail Free card. But you don’t have to use it. That’s up to you.

By the way, I know I became famous talking about sex, but the reasoning behind what I’m saying has less to do with sex than fighting loneliness. If your spouse is in a facility and doesn’t recognize you when you visit, it may be difficult to continue to consider them your closest companion. No matter what your age, you’ll benefit from having some companionship. (If your spouse is much older than you, or if your spouse has early-onset Alzheimer’s, that’s an even stronger reason to look for a new partner.) The fact that most people spend at least part of their lives in a relationship shows that we have an innate need to form a close bond to someone else. And sex is part of the glue that holds such relationships together. So while perhaps you don’t feel a very strong desire for sex (though it’s a nice bonus), the fact is, if you want the companionship that comes from a relationship, you probably are going to have to accept the entire package, which will include a sexual component. It’s that sexual component that causes everyone around you to become upset, but so be it.

A CHANGE IN STATUS

While your spouse is still alive and possibly still under your care in your home, you’re going to face other types of issues as your relationship changes. I have a close friend who is bothered by the fact that his wife no longer recognizes his emotions. It’s one of the symptoms of Alzheimer’s; the victim loses the ability to “read” people and can no longer understand the subtext of what they’re saying via their body language. This loss makes them more gullible and so at risk for being cheated by con artists. But in the case of a husband and wife, when one partner no longer acknowledges the emotions of the other, this changes the dynamics of the relationship in so many ways. And an important aspect of this change is how the healthy spouse feels. If happiness, sadness, anger, fear, and so forth can no longer be communicated, it adds to the healthy spouse’s feelings of loneliness.

Another change that slowly develops and impacts the relationship is sharing of responsibilities. Usually, each partner takes responsibility for certain activities in the relationship. But because of Alzheimer’s, as the caregiver you’re going to have assume responsibility for everything. That’s a burden on you, but you usually won’t have a choice. This may also cause some conflicts between you and your spouse. For example, if your husband used to do the majority of the driving, at least when you were together, and now he mustn’t be allowed behind the wheel of a car, that may make him frustrated and angry. He may take it out on you. What you have to remember is that he’s not really mad at you, but he is instead frustrated by the limits being placed upon him by the disease.

Robin Leckie, who wrote that article I quoted earlier, admitted he was a very bad “backseat driver” at first when his wife had to do all the driving. But now he enjoys being relieved of that burden as he can better enjoy the scenery. What this tells you is that to some extent you have to allow time to heal some of these wounds. Yes, your spouse may feel angry at first, and who can blame him, but eventually he’ll come to terms with it.

How about your reaction to having to carry the full load? There’s no getting around the fact that it’s going to be difficult, but the more you fret about it, the worse it will seem. Somehow, you have to dig deep into the well of your love for your spouse, like the parent of a newborn who doesn’t want to get up two and three times in the middle of the night but who certainly would never dream of taking it out on the baby. Your spouse is becoming your baby, and emotionally you have to learn to accept that. Since in all likelihood it’s going to be long, slow process, try to adapt using a step-at-a-time approach. Staring into the future and foreseeing all the burdens that lie before you is not going to be helpful.

One of those issues that you may already be facing (but probably lies ahead) is that when you’re talking to your spouse, you may not know which spouse you are talking to. Alzheimer’s causes delusions. Especially in the early stages, when your spouse is “normal” most of the time, you may not realize for a time that he or she has suddenly gone elsewhere. You’ll be hard-pressed to know which husband you’re talking to, the one you always knew or the one who’s suddenly in another place because of his disease. That is going to frustrate both of you. If you always assume that your spouse is not of sound mind, he or she is going to get very angry at you when not he or she is not delusional, so you have to tread carefully. One thing you can do is not start a serious conversation without knowing the state of your spouse’s mind. Start with simple questions that will allow you to judge your spouse’s mental acuity and then decide what tack to take.

FIGHTING

Every couple endures fights, some more than others. Because of those fights, you develop certain reflexes. You grow buttons that your spouse knows how to push. Now, however, you find yourself in a situation where your spouse may be doing a lot more button pushing, and yet you can’t react in the ways you have previously. It’s pointless to get into an argument with someone who is not in full control of his or her mental state. So how do you get through the day?

When I was in the orphanage in Switzerland, one of my duties was to take care of the younger children, and once I immigrated to Palestine, I studied to be a kindergarten teacher. When I lived in Paris, I taught kindergarten. In this country, I got my doctorate at Columbia Teacher’s College. So, I know a thing or two about taking care of young children, and taking care of someone with dementia has certain similarities to tending to young children.

You can’t be a cruel kindergarten teacher, because the children will burst into tears. You have to maintain discipline, but you have to do it with a smile, so that your students will want to come to school the next day. The way you do that is by having the day planned out, with lots of spare activities hidden up your sleeve in case one of those you had planned isn’t working out quite right. When taking care of someone with Alzheimer’s, you have to try a similar strategy. You have to smile even when you want to scream or cry, because your spouse will take cues from your emotional reactions, and if you show that you’re upset, your spouse is likely to become upset as well, and the atmosphere will only get worse. You have to keep in mind that words won’t always get through as readily as body language.

While it may be hard to mask your emotions, you also have to realize that your emotions can fool you. Under normal circumstances, if you face a problem, you try to fix it. But Alzheimer’s can’t be fixed. You may feel frustrated and angry, but that’s not going to help the situation. You have to learn to accept that your spouse has Alzheimer’s, and there’s nothing you can do about it but try to make the best of each day, hard as that may be. So, controlling your emotions when your spouse pushes your buttons is practice for doing so at other times, like when you’re dealing with repetitive behavior or when your spouse acts inappropriately in front of people. Getting upset isn’t going to help the situation. By letting go, by not trying to control something you can’t, you’ll both be better off.

By the way, I offer some more detailed practical advice for caregivers of all varieties, gathered from various experts, in Chapter Nine. In this chapter, I want to concentrate on the unique situation faced by spouses because your lives are more closely intertwined than other caregiver-care recipient relationships. You deserve this special attention.

SEX

A question faced by every couple affected by Alzheimer’s has to do with sex. Whether your partner is in the early stages of Alzheimer’s or the latter stages, whether your relationship is still very much together or whether it has been shattered, does it mean that your sex life has to end?

Let me first say that while this topic is not one that is usually covered in materials concerning Alzheimer’s, it is an important one, and I’m not the only one saying so. Yes, I speak about sex all the time, but the doctors who tend to patients with dementia all recognize that sex is part of the overall set of problems that couples must face. It was specifically recommended to me by some of these doctors that I cover this area. So, if this has been on your mind, know that you’re not alone and that any questions you have are completely legitimate.

Alzheimer’s progresses slowly in most cases, and it’s not as if you’re going to hit the off-switch regarding sex the second you hear a diagnosis of Alzheimer’s. First of all, as the caregiver, there’s no physical reason for you to give up on sex. You can’t do any physical harm to each other. (This can be a concern for couples when one has a heart condition.) But while the sadness that may hang over you upon hearing this diagnosis might inhibit your ability to become aroused, try not to let this happen. Having orgasms release endorphins, which make you feel better, so you shouldn’t abandon this source of relief. Additionally, the person with Alzheimer’s would feel terrible if he or she was rejected by a spouse because they were in the early stage of this disease. Initially, your sex life can and should continue. But at some point you are going to encounter changes that may put an end to it, and that will be one more aspect of how this terrible disease is going to affect your marriage.

Your sex life as a couple has always been private and that’s not going to change. The most important thing I want to say about this subject is not to worry about what society, your children, your neighbors, or the postman would think if they knew you were continuing to have sex or had stopped having sex. This doesn’t mean that you must keep having sex through the various stages of this disease, but it also means that there doesn’t come a specific time where you should stop. It’s a decision that you have to make together.

The fact is that sex feels good, even to someone who has Alzheimer’s. If you were both enjoying sex before your lives were turned upside down by this disease, there really is no reason to stop if you still want to have a sexual relationship. And I would encourage you to continue as long as possible—but remember, this isn’t my decision, it’s yours. If you feel uncomfortable having sex with a spouse who is not all there, then don’t. But if you’re sitting on the fence, if you’re not sure, then I would urge you to continue.

One reason I’m saying this is that if sex has always been part of your life together, it’s important to hold on to whatever remains of the bonds that form your relationship. Let’s say you two used to have a cocktail together every evening as you watched the sunset. Unless the doctor has told you that your spouse shouldn’t drink alcohol, then I say continue to do so. (And you could always substitute a non-alcoholic drink for your spouse. More about alcohol and Alzheimer’s in Chapter Nine.) At some point, your spouse may no longer remember this routine, but you will, and whatever brings you together, even if it’s only in your mind, will make it easier for you to get through your day. You need help maintaining awareness that this person is still the same one you married, so sharing special moments together will help you. And, of course, that applies to sharing sex.

By the way, sex or making love doesn’t have to follow the same routine as previously. For example, your spouse will definitely enjoy the gentle touch of a nice massage. If you are both nude, and even if only one of you desires sexual satisfaction, in that situation, this can easily be accomplished. You need to acclimate yourselves to what Alzheimer’s is doing to your relationship, but that acclimation does not have to mean forced celibacy.

If you need sexual release and your spouse does not want to engage in any sexual interplay, then I would tell you not to hesitate to masturbate.

Some people with Alzheimer’s seem to lose their inhibitions, which may mean that your spouse will want more sex than you were used to having before. (Sometimes a hypersexuality comes to the forefront in later stages of Alzheimer’s, even if in the prior stages the care recipient showed no interest in sex at all.) Or else, sex may be one of the few pleasurable activities left to him or her, which may also make it more desirable. However, if you were to give in all the time, sex could become one more burden of being a caregiver. My advice in such situations is to say no when you need to, but to also say yes from time to time. You don’t want your relationship, your marriage, to turn into merely a nurse/patient one. You are still husband and wife, and having sex can add intimacy that will make your life together less stressful, because the more you drift apart, the harder it will be on you. Of course, in the later stages of the disease, this advice may not apply.

Some people who have Alzheimer’s give up on sex. This may be a result of the disease, or it may stem from feelings of depression, especially during the early stages of Alzheimer’s when your loved one understands what is happening and what is going to happen. Even if your sex life disappears, don’t stop touching one another. The more that verbal skills are lost to the disease, the more other ways of communicating gain in importance, and touch is one way of showing a range of emotions that can be very comforting.

I have read reports that erectile dysfunction (ED) is common among males with advanced Alzheimer’s. ED may make having intercourse impossible, though that doesn’t mean that you can’t still pleasure each other. Do not attempt to give a male care recipient experiencing ED a drug like Viagra without checking with his physician. There could be repercussions if it interfered with any other medications he was taking.

Some wives complain that their spouse who is suffering from ED will blame them for the problem, even though it is not their fault. Of course, people with Alzheimer’s tend to blame their caregiver for all sorts of problems, many of which are delusional. Learning to accept such criticism, and trying to deflect it by switching topics while not showing any emotion, especially anger, is one of the talents that caregivers must develop, without letting the stress of such theatrics get to them. I don’t know if it is any sadder that something that once gave the two of you so much pleasure—sex—has now become just one more source of stress, but it certainly is not easy, that I understand.

When your partner is no longer communicative, should you still be having sex? Some men whose wives lie there compliantly feel guilty about having sex if she can’t verbalize her assent. In such cases, I would advise taking a close look at body language. You should be able to tell whether your partner is showing signs that he or she doesn’t like what is happening, and if that happens regularly, then you should stop having sex. But just because your partner doesn’t exhibit any positive signs doesn’t mean that he or she isn’t deriving some benefits from having sex with you; so, in such cases, I would tell you to continue. But you have to be the judge.

As Alzheimer’s progresses, you, as the caregiver, will find yourself doing very personal things for your care recipient, many having to do with personal hygiene. Some people find that these activities change their perspective, and they feel less desire to have sex with the person they are caring for. This is a tricky situation because if your partner still desires sex, he or she could take your rejection very personally, so it would cause an even greater loss of self-esteem. I understand that it’s not always easy to separate your loved one into two people, your life partner and this person with dementia, but to the degree that you can, do make an attempt. Perhaps, it would be helpful if while making love you kept the lights off or down low and try to use fantasy to help you become aroused. Picture the days when you were both healthy and direct your thoughts back to those times.

It’s also possible that your loved one may forget what is needed for you to have sexual satisfaction. This is especially true if you are a woman who needs more than intercourse to have an orgasm. If your partner is unable to help you, you may resent the idea of having sex, as it leaves you unfulfilled. Or, if suddenly the entire responsibility of how you have sex, such as using added lubrication, falls on your shoulders, you could easily allow yourself to resent it, and thus lose the desire for sex. Such obstacles may be impossible to overcome, but at the same time, over your lifetime I’m sure you’ve had to overcome other such barriers. Maybe one of you broke a leg and had to wear a cast for six weeks, yet somehow you found a way to enjoy sex. Having a partner with dementia is much more complicated, I understand, but I also don’t want you to give up on sex without putting up a bit of a fight. For example, even if you never used a vibrator before, perhaps this would be the time. Even if your partner is unable to use it with you, it might make having orgasms a little bit easier, and so keep you from feeling sexually frustrated.

This may also be a time to examine your sexual repertoire, for instance, the positions you use when having sex. If some become impossible, perhaps you should try others. This is true for all older couples who may find that certain positions become too difficult because of physical ailments, but it may also be true when one partner has problems with dementia.

One other problem that you might run into as a couple is that after you’ve had sex, the partner with dementia may forget that this has occurred and demand to have sex again. If this happens to you, you must divert your partner’s attention from the desire for sex, which may not be all that strong in any case, given their age and the fact that they recently had an orgasm.

The bottom line is that the decision of when to have sex, or maybe never to have sex, is up to you. If having sex is too much of a burden, then don’t. My main point is that you shouldn’t abandon having sex just because your relationship has changed so dramatically. Don’t assume that your sex life has to end, but instead allow yourself the freedom of choice.

If you make the decision to stop having sex, or if that decision is made for you by your spouse, don’t allow this to keep you apart physically. As you’ll read in this book over and over, when verbal skills disappear, touching becomes even more important. Where this can become problematic is if you don’t want to have full sex any longer, but when you touch your partner, he or she thinks that is a signal to have sex. This may be confusing to both of you for a while, but if you persist at turning down advances, hopefully you’ll be able to continue to touch and hug your partner without it leading to an uncomfortable situation for both of you.

While some couples continue to sleep together, some caregivers feel the need for a break, and if separate sleeping quarters are available, they will sleep apart. This is certainly understandable, but it may make your loved one feel insecure. Also, if your loved one gets up in the middle of the night or needs help, you won’t be there (though a baby monitor might help with that particular situation). It is probably advisable to let your loved one’s doctor know if you intend to sleep in separate rooms. If you do end up sleeping separately, one suggestion is to give your loved one a substitute, such as a stuffed animal or a pillow to hug.

In our society, older people are thought of as being sexless. When a movie features older people showing any interest in sex, it’s the talk of the town, as if older people are supposed to have forgotten about sex. Yet the truth is, people can continue having sex no matter how old they are, health permitting, of course. This attitude would certainly extend to older people having sex when one partner has dementia. As I said earlier, don’t allow society’s attitude to have any effect on your sex life. Certainly, your relationship will change because of Alzheimer’s and will continue to change. Just don’t assume that Alzheimer’s has to spell the end of your sex life, because then it will. Just keep an open mind and see what happens.

MASTURBATION

As the disease advances, as I said, some people lose all sense of inhibition. Males especially may masturbate openly. If they’re doing it front of an open window or when others are around, it is not going to be acceptable. But if you’re the only one witnessing this, rather than trying to always enforce a rule not to masturbate, my advice would be to walk out of the room and allow your spouse to masturbate. Yes, this is a weird situation, and you might find it quite embarrassing, but masturbation can’t harm anyone, and the more sexually frustrated your spouse is, the more that frustration may show up in other ways. And, if you’re tired of cleaning up after your husband, my suggestion would be to be proactive and put a towel under him rather than have a running battle and always forcing him to stop.

On the other hand, I would not recommend that you allow pornography to be part of this mix. You don’t want to overstimulate your spouse, and porn does have addictive qualities. If fantasy is not enough for him, then he’ll just have to deal with the situation.

If a wife asks for a vibrator, however, I would advise providing one. If a woman feels the need to have an orgasm and the only way she can do so is using the strong sensations of a vibrator, then she shouldn’t have to remain sexually frustrated. I don’t think this is going to be a very common request, but if it does occur, that’s my opinion.

Older women also require lubrication, certainly when having intercourse, but many will need it for masturbation, as well. Here, I would definitely advise the husband of a woman with Alzheimer’s to keep lubrication on hand. In fact, even if he is masturbating her, assuming she indicates that she enjoys this, he should use a lubricant to make sure that afterward she is not sore, whether or not she remembers to tell him.

JEALOUSY

When the person with Alzheimer’s is put into a facility, and he or she has forgotten their spouse, an attraction for another Alzheimer’s patient residing in the facility may develop. If this situation becomes mutual, it may turn into a love affair, though whether or not the two people have sex may depend on the rules of the institution. But where does that leave the spouse who is left behind? Some people are able to ignore this behavior, understanding that their spouse no longer really belongs to them. Justice Sandra Day O’Connor’s son reported that his mother actually found relief in her husband’s romance, as it meant that at least her husband was happy where he was. But others may feel horrible, becoming jealous or depressed.

If you run into this situation and it really bothers you, then perhaps you’re going to have to curtail your visits. Yes, you feel obligated to visit, and, yes, you’ll feel guilty if you don’t go as often, but in the end, your mental state has to come first. Perhaps over time you’ll get used to this new situation, but if your spouse no longer recognizes you and is infatuated with someone else, you’re not duty bound to visit if it is going to cause you an inordinate amount of pain.

The bottom line is that when it comes to sex you have choices. There’s nothing written in stone, and so if your spouse has Alzheimer’s, let yourself be open to all of the possibilities. Keep in mind that as the disease progresses there are going to be changes in your sex life as a couple, so you can’t really settle into a pattern. Sex is going to present one more challenge, but if you can continue your sex life together, there will also be rewards.

YOUR MUTUAL FRIENDS

Most married people have some friends that are theirs alone and others whom they’ve always seen as a couple. Some of those in the former group, like the people you’ve maintained contact with since school days or your coworkers, may actually put more effort into reaching out to you in this time of need. Those whom you almost always saw as a couple may pull away, not because they much preferred the company of your spouse but because yours is an awkward situation. If several couples you know are going out together for dinner, do they invite only you? Are they worried that if they do extend an invitation that you might bring your spouse, who could cause them embarrassment? Are they afraid that if they’re all still couples that you’ll feel odd being the only “single” person there? Or, have you established a pattern of turning down such invitations, which has caused them to stop inviting you?

Having companionship is very important to a caregiver, and what I don’t want to have happen to you is for any sort of misunderstanding to develop that ends up leaving you out in the cold. At this juncture in your life, it’s especially important that you not be left alone, and so if it means you reaching out to them and saying please don’t forget about me, then go ahead and do it. Assume that they’re confused about your situation and clarify matters for them. By taking the first step, you’ll be insuring that you won’t be spending evenings alone for no good reason. And anytime you are asked out and can’t go, for whatever reason, make sure to emphasize the fact that you want to be included in any future plans. You might even be the one to initiate a night out. That’s a sure way to break the ice and avoid any confusion when it comes to your friends wondering whether or not you want to socialize with them.

When you go out with friends, politeness mandates that they ask about how you and your spouse are doing. But that may be a subject that you’d prefer to get away from for an evening. My advice would be to say a few words in answer to their question but make it clear that this evening is about you getting a break. You also shouldn’t ignore the fact that you have a spouse. Don’t be afraid to bring up past good times. Just remember that, for the first few times you go out with these friends, it’s your job to make sure that they feel comfortable around you, so that there will never be any doubt that they invite you regularly.

I understand that these couples whom you’ve counted on as friends, perhaps for decades, should be the ones reaching out to you, offering you help and solace and going out of their way to remain the good friends they were in happier times. And I’m sure that some of your good friends will do that. But there are what have been called “fair-weather” friends. They enjoy socializing, but they don’t want to extend a helping hand. Maybe they have a good reason, like troubles of their own. Or maybe that’s just the way they are. But given that you have already lost one important friend, your spouse, my advice is not to cut these people off out of spite, not to say to yourself, “Why aren’t they going the extra mile, considering all that I’m going through?” You’ll get help from some people, even total strangers. But you also need companionship and some anchors to your past life, for yourself, if not for your spouse. These fair-weather friends have something to offer, and my advice is not to throw it away. They’re not obligated to help you, but merely by thinking to include you in their activities they’ll be offering you the opportunity for a break from your duties as caregiver.

OTHER SOCIAL CIRCLES

The two of you have interacted with other people in many ways. For example, you may have regularly attended religious services. A house of worship can offer great comfort, but if everyone stops to ask you about your spouse, that can take away from the experience. Yet you’d likely be offended if they didn’t. You want you and your spouse to be in their prayers, and yet you may get so little free time away from your duties as caregiver that you don’t want every experience you have outside your home to be dominated by the fact that you have a spouse with dementia.

My advice is to give a short, neutral answer like “We’re coping” and quickly ask them about their lives. Try to be as upbeat as possible and try to keep the conversation flowing. You need this company, be it a book club, weekly card game, or just people you run into at the supermarket, but you need this socializing to give you a break from your role. So, to some extent it’s up to you to put as positive a spin on this type of socializing as possible.

I would also suggest that you keep up with current events of all sorts, not just politics. If you want to steer a conversation away from your problems at home, you have to be equipped with the information to do so. You can’t always talk about the weather. But if you know what’s in the news, there will always be a topic or two you can refer to. It might be the latest movies, sports, fashion, gossip, the latest discoveries in science—you name it. As long as you’re prepared, you’ll be able to keep up your end of the conversation, even if you’ve been stuck inside the house for the last week or two.

That’s not to say if you need a shoulder to cry on that you shouldn’t seek out such shoulders from any group of which you’re a part. If there are members of a group who sincerely want to “be there” for you, that’s great. But let’s say the people you play cards with once a week are really into just playing cards. They’re serious card players and they don’t usually discuss their problems. I suggest that you just accept such a situation, meet them to play cards, and find that shoulder to cry on elsewhere.

MAINTAINING YOUR IDENTITY

To some extent, everyone has some difficulty maintaining a separate identity when they’re part of a couple. It’s easier if you’re out of the house on your own a lot, for instance if you go to a job. But if you become a primary caregiver and find yourself spending most of your time at home with your spouse, the role of caregiver can become all-consuming. And, if you had any difficulties separating yourself from being Mr. and Mrs. before an Alzheimer’s diagnosis, then it’s going to become even more difficult for you.

The big problem is that when you were a couple, you were clearly a separate person to your spouse. You voiced your opinions and had your own hobbies and interests. It wasn’t as important to be a separate person outside of your home. I’m not saying that it isn’t a good idea to have maintained activities that separated you, but it wasn’t critical either. But now, with a spouse who has dementia, you must form your own identity, and preferably that identity won’t be limited to that of caregiver. Let me give you one example of what I mean. Let’s say you and your spouse always played tennis as a doubles team. Now, he can’t play at all. Does that mean you have to stop playing the game you’ve enjoyed all these years? No, but it’s going to take some effort on your part to make sure that doesn’t happen. Either you’ll have to find people who’ll play singles with you or find a new partner for tennis. This example is very specific, but the truth is, you’re going to have to work at setting up your own unique identity in each social circle you want to remain part of.

YOU MUSTN’T SOCIALIZE JUST WITH YOURSELF

When you’re talking to a spouse who doesn’t understand what you’re saying, it’s really like talking to yourself. While there’s nothing you can do about this situation, I want you to realize how important it is to make sure you don’t wind up talking to yourself all day long. Everyone needs human interaction, and even though you’re not actually alone, your situation is very similar to someone who is. Once you understand this new reality, you’ll hopefully be better able to do something about it. But you will have to change your view of yourself as being part of a couple, because while you may still be physically joined, that may no longer be the case on other levels, such as intellectually and emotionally.

With so much on your mind, it can be easy to create a bubble around yourself. Every day, you don your role as caregiver and go about your business. But that doesn’t leave room for “you.” You have a void—not a physical one, of course, because actually your spouse needs more tending to than ever before. But you are faced with a void in terms of having companionship. And you need to accept the fact that you have to be proactive about filling that void. In order to be the best caregiver you can be, you need to take care of yourself physically, emotionally, and intellectually. You need to make certain that you have enough interactions with other people to recharge your batteries. If you need someone to talk to about your situation, or about the news, or if you need a shoulder to cry on, seek out other people. Make sure that you maintain communication with the outside world so that your situation doesn’t become overwhelming.

FOR THE LGBT COMMUNITY

As I write this, more and more states are legalizing gay marriage, but nevertheless, most gay couples are not married. However, the emotional attachment you have for each other is not affected by your marital status, and the difficulties you have with Alzheimer’s may be more acute for several reasons.

For example, if a gay person has not come out, the pressures of a serious disease like Alzheimer’s may make his or her life more problematic. There is a host of issues that are going to have to be addressed, such as doctor visits, hospital visiting rights, and a whole array of financial matters, and sometimes the only way to get around them will be to acknowledge the relationship. Many of these issues will also affect openly gay couples, as most hospitals will not release medical information to an unmarried partner. Keep in mind that even without being married, there are papers that can be signed, like a power of attorney, which will help you get through such situations. But such papers can only be signed either before dementia strikes or in the early stages. If you wait too long, no attorney will be able to certify that your partner was of sound mind and therefore legally able to sign such documents.

Many gay men and women do not have a committed partner, and finding a caregiver can be very difficult. They may not have children, and some have become estranged from other relatives because of their sexual identity, so that even though they are in dire need of assistance, relatives one might expect to be of help refuse. And while any single individual is going to encounter more stress in caring for a sick parent, more gays are single and so more likely to run into this set of problems. Additionally, the sexual issues that I wrote about between husbands and wives could be further complicated if the relationship has never been legally sanctified.

Research has shown that many gays who were reluctant to come out of the closet will return to the closet once they hit a certain age. Since it was never easy for them to be openly gay, and as they gain more responsibilities in their work life, they may decide it’s easier not to be open about their sexuality. This solves some problems when it comes to discrimination when rising up the ranks, but it creates others when it comes to health matters, as a partner cannot be fully included in the process. The best time to address this type of situation is before you run into any health problems.

In other words, being a solo caregiver or obtaining caregiving for oneself, which is already very difficult for anyone, may end up being even more difficult for gays and lesbians. My advice to you is to reach out for as much support as you can in order to address and accommodate these extra burdens. I never tell gays and lesbians who come to see me that they must come out. On the other hand, if a gay or lesbian caregiver is really in need of assistance dealing with Alzheimer’s, the gay community might offer a potential support network whose benefits should not be ignored.

All caregivers are under tremendous stress. If you end up being under even more stress because of discrimination, family dynamics, or potential isolation, at the very least you have to recognize the source of that added stress and take steps to alleviate it in whichever ways make the most sense to you.