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Wendy Lustbader, M.S.W. , is a mental health counselor at Pike Market Medical Clinic in Seattle and affiliate assistant professor at the University of Washington School of Social Work. She also lectures nationally on topics related to chronic illness, aging, and the needs of family caregivers. She is the co-author of Taking Care of Aging Family Members: A Practical Guide and author of Counting on Kindness: The Dilemmas of Dependency, both published by the Free Press.

How did you become interested in counseling family caregivers?

I had a grandfather who had Alzheimer's, and at that time I was already a social worker. But watching my own family cope with his disease and go through a lot of conflict around the care made me realize that families handling a relative with dementia have special needs. My interest in family dynamics has been lifelong, but my interest in dementia and how it affects family dynamics became very powerful once I saw it firsthand.

What are some of those special needs affecting a family?

One issue is the out-of-town visitor vs. the local caregiver. This came up for my mother and her sister. My aunt was the primary caregiver for my grandparents, supporting my grandmother's efforts to care for her husband and also doing some direct care of my grandfather. When my mother would come to visit from out of town, she was unable to perceive how difficult it was to handle my grandfather because he would improve whenever she came to visit. He always perked up whenever he saw a fresh face, and he actually didn't appear to have Alzheimer's at those times. He had terrific social skills and could cover up well. So, one problem is that it is so difficult to perceive some of the deficits when someone is in early to middle stages and you're visiting for a brief time. There can be conflicts with the local caregivers because the situation appears different to each of you.

What else affects the dynamic?

Another big issue arises when adult children see that one of their parents is in denial about the other's memory loss. I often hear comments like, "My mother's not facing it." Or "She won't talk about Dad's condition." When they say they're worried about Dad's driving, she'll insist, "There's nothing wrong with Dad." So, adult children often come to me and say, "Why isn't my mother able to face this? Why can't I even say the 'A' word - Alzheimer's." A big rift can open up between the adult children and the parent caring for a partner with Alzheimer's, can be very lonely for both parties.

What suggestions do you have to help families come together, particularly for those who are not involved in the every day care?

First of all, the visiting family member should remember that things are not as they appear. This helps the visitor ask the right questions. The most important question to ask the primary caregiver is, "What is it like for you? I know that it's different when I'm not here. What is it really like taking care of Dad?" I think that is the number one approach that leads to family harmony instead of some of these battles. Just to recognize that you, the visitor, are not able to perceive accurately because it is in the nature of this disease that people kind of revive when they see someone they haven't seen in a while.

Second, if you have suggestions that you think are helpful, try to offer them without imposing them because the local person might be feeling very negative or exhausted and may have tried that idea before. They might feel that your idea only adds pressure to their lives. I see a lot of visiting siblings having arguments over this type of thing, or feeling frustrated that the local person won't implement their idea. It's best to be very gentle in making suggestions.

Now, the flip side, what suggestions do you have for the person who is the primary caregiver receiving out-of-town visitors?

First of all, try to be sympathetic to the fact that you, the local person, know a heck of a lot more than the visitor about day-to-day caregiving. No matter who the visitor is, you are on the scene. You'll have to do a lot of forgiving of the ignorance of people that are not on the scene. They may really have no idea what they're talking about. There may be an older sister or brother who's getting bossy with you, or maybe it's a brother/sister dynamic. Try to do some deep breathing and realize that people are coming from left field, literally, unless they've actually taken care of someone with dementia. They genuinely don't know of what they speak.

I think it helps to have compassion for that ignorance rather than the usual reflex which is to get very angry with someone who tries to tell you something they don't know about. Thank them for their suggestions and remember that soon it will be all up to you again, after the visitors leave. Also, it helps to remember that you've had time to get used to the person's dementia but the visitor may be in shock or sorrow. Even though you hoped for support yourself, you may have to be the one doing the comforting because you've got a broken-hearted visitor on your hands.

Let's look at adult children who may reside in the same town, but are away from the daily caregiving situation, who want their parents to do certain things. Although they may have very good suggestions, for one reason or another the parents don't want to take them. I think it's a very interesting issue of who is in charge. The adult children want to make life better, make themselves feel better for making these suggestions, but in fact it may not actually be what the older person wants to do.

Well, a great example is a woman whose husband has dementia and the adult children are just clamoring for her to take a day off and even let them hire someone to stay with Dad while she gets a day to herself. The family is completely perplexed and may be angered when mom says, "No, I don't want any hired help. No one can take care of Dad like I do." This person is not just being stubborn; she's dealing with very complex feelings. One of them is, is it really okay to go out and enjoy yourself when you know your loved one is going to have a hard time being with a stranger? The spouse or partner feels a huge barrier of guilt. Another barrier is the fear that as soon as they leave the house something bad will happen to the loved one. That's a fear that plagues many partners and spouses. When they do leave the house, supposedly to enjoy themselves, they actually feel sick with worry and many say it's not worth going anywhere. But one of the saddest barriers which I think adult children need to understand is what many caregivers have told me: "You forget what it is to have a life." You can forget what it was that you used to do before the person became so dependent on you. You can be almost afraid to have a life again, because what if you really enjoyed it? And what does that mean for the other six days of the week? Some people actually retreat into complete self sacrifice as a way to defer the guilt, the worry, and the question, do I really want to be doing this care? Those are pretty hard issues.

We have observed that there often is the issue of a couple's expectations for their future, for their retirement not turning out as expected. One partner may insist on placing the other in situations which are inappropriate simply because they don't want to give up on those dreams.

This gets back to the problem of a partner or spouse being in some serious denial of what's going on. It's very important for those trying to help a spouse or partner to understand how denial functions and what it is. It's a protection against a reality that the person is not yet ready to accept. I find people deal with things when they're ready. You're not going to help someone deal with something by trying to force them to face it -- "Can't you see how bad Dad's memory is getting? He's not really playing the card games when you go to play cards. You have to handle his cards for him. You're both just putting up a big front." Well, on some level she knows that she is faking it on his behalf and when she's ready to face that, she will.

I think that what adult children and others should do is try to talk to the partner or spouse in terms of what they're ready to talk about. Be problem-focused. If the mother or father says to the adult children, "I'm really worried about Dad's driving," they have just reached out to you. Now maybe they're not ready to say Dad has Alzheimer's but they are ready to talk about how scared they are when he's behind the wheel.

Stay focused on the problem and don't force the person to come all the way out of their denial. Don't mention the elephant in the living room. Go ahead and tip toe around the elephant, but reach out to the person on the level they're ready to deal with. I find it tremendously more helpful than trying to force someone to face what's happening.

How does denial affect trying to get the caregiver to take a day off?

Denial is often one of the big barriers. If you let someone else come in and care for your husband, his true level of deficit is going to become known. If I'm taking care of my husband and I'm in denial, I'm most likely compensating for him. I cue him to get his clothes on, I cue him to take his pills, I cue him even to go to the bathroom. I'm not facing the fact that my husband wouldn't even find his way to the bathroom without me. If I hire someone else to come in and stay with him while I'm gone, all of that's going to become apparent. In fact, to protect my husband, I'll have to actually say to the substitute caregiver, "These are the things you need to do on his behalf." As soon as I have to speak that sentence, my denial crumbles. So, I think that's why a major barrier to leaving the house is all the instructions you'd have to give to someone else. You'd have to really face it.

If you're an adult child and aware of some of these issues, what can you do? Do you have to wait for the situation to change on the part of your parents?

If you remember that you don't have to make all the denial go away at once, it opens up ways to talk. For example, it's really fine to say, "Mom, I'm worried about you - it seems like it's gotten harder and harder for you and Dad to go places." That's a very open-ended remark and an invitation to your parent to open up to you. Keep issuing these very sympathetic and kind and gentle invitations to talk. One day, your mother or father will take you up on it because it's gotten so hard for them. Another idea is suggesting something like an adult day center. Sometimes the fact that the couple has become isolated is something that they'll talk about, as long as you don't have to say the word Alzheimer's. I've actually gotten couples to go to adult day centers, looking at it as a kind of sophisticated senior center. Some of them are really designed that way. The person who does not have dementia becomes a volunteer in the center, and to the person with dementia we say, "It's time for your classes." It's within a couple's dignity for one to say to the other, "Let's get out of the house, let's go to the Center. You can go to classes and I'll help around the place." This way, the spouse who doesn't have dementia gets contact with other people and has some fun. Eventually, the caregiving spouse may be able to leave their partner there and take a break.

This happened with my own grandmother. She loved volunteering at the Day Center. She fed stroke patients who couldn't lift a fork while my grandfather became one of the beloved participants at the place. Six months later, the staff told my grandmother she could go and take time for herself, that my grandfather wouldn't even notice if she left. She began to have a life again. Adult Day Centers allow people to keep their loved ones at home much longer than they would have otherwise. I think that's a great resource and a creative way of getting both people out of the house.

If you want to make sure that all of the members of the extended family or friends understand the situation or if you want to be able to provide a network of support to the primary caregiver, what are some strategies to get everyone together for a family meeting?

A family meeting is usually effective only if the family has a basic harmony. In other words, there needs to be good will between members of the family. I'm not saying there can't be conflict, disagreement or different perspectives, but the basic attitude of people towards one another has to be harmonious. When that is the case, I strongly recommend a family meeting. What you're doing at the meeting is describing to each other the problems that you're facing, your different perspectives, and you're asking how to best support the primary caregiver. There's almost always someone in the family who is doing most of the care. Whoever the primary caregiver is, the focus of the meeting should be what everyone can do to support this key person.

In my book, Taking Care of Aging Family Members, there's a brief section on family meetings: how to run them and some of the things to talk about. 

Now, for families that don't have basic harmony and good will, I do not recommend family meetings. They end up being family arguments. It doesn't help the primary caregiver to have a meltdown meeting. What's helpful to the primary caregiver is help. I think the family members who feel supportive of the primary caregiver should get together to talk. Drawing in those who feel resentful or have old grudges tends to bring up family problems that have nothing to do with the care. Some families may benefit from actual family counseling if old issues are getting in the way of the unity that's needed to care for a loved one. There's no better reason to solve some old problems than your desire to be good to your parents.

What other issues do you think might be of interest in terms of the family dynamic?

Another issue is bringing into the care situation family members who have good will but are afraid to help out. They may feel so much sorrow around the person with dementia that they don't want to be in that person's company. I'm thinking of a man whose sister is doing all the care for their mother. He confessed to me that his mother was always the matriarch of the family, the strong one, and seeing her brought down by dementia is too painful for him. He literally cannot bear to visit. He feels horribly guilty because his sister is overwhelmed. What he needs to do is support his sister in other ways that don't require his going into the home, such as taking his sister's son to day care or mowing her lawn. All he has to do is ask, and his sister will come up with 15 ways that he can support her without ever coming in the house.

I think primary caregivers, especially when they're daughters and wives, get into this women's martyrdom syndrome which is that as women we feel we should do it all: "I'm not a good daughter or a good wife if I need help." In fact, we do a better job when we accept help. If you take time out for yourself, you have more patience. Your sense of humor comes back. You remember who you are. Taking care of yourself makes you a better caregiver, and that means accepting help.

So what's the best kind of help for caregivers?

I think first of all - respite -- true rest -- is essential. No one should try to do this kind of care seven days a week, 24-hours a day, without a break. Outside help, in order to get time off from caregiving, is a number one goal. There is a list of services for older adults in the front of the phone book in every community, especially a senior information and assistance hotline. This is a good place to start finding services for caregivers.

A second kind of help is support groups. I think that support groups are the modern answer to the loneliness of each of us living in our own little house or apartment. No one knows more about family caregiving issues around dementia than a fellow caregiver. For people who aren't joiners, this is the one time in your life to go ahead and break out of your pattern. There's nothing quite like it.

Finally, counseling might be helpful. I think primary caregivers who are experiencing depression, exhaustion, or thoughts of giving up should consider tapping into the expertise available out there. In just a few sessions with a knowledgeable counselor, they can identify what's causing their depression. For example, there could be some issues from the past with that person who has dementia and now there's no way to reconcile them. Sometimes people really do need to turn to professional help to get some perspective and insight.

Interview Date: July 1998

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