"Robyn asked me to talk about strategies that caregivers might use in dealing with their mates or affected family members. This is not a very easy topic to deal with for several reasons. First of all, I come from a culture which although similar to Australian culture is not really the same. Our medical systems, for example, are very, very different. You cannot realize how fortunate you are in this country. You have governmental involvement in your problems, In the United States, unless you are impoverished, the government tends to be stand-offish. We also have a very different mind-set and attitude in the U.S. in that each individual is expected to take care of themselves, take care of their health problems, their own headaches so-to-speak and the government does not really get too involved. So, I hope you will understand that when I speak about strategies that I am definitely culture-bound. What might work in the U.S. may not apply here and may not ring the same kind of bell as it would in the U.S.

The second thing that makes it difficult to talk about strategies is that no strategy will work for everyone. A given strategy might work well for one person but may backfire for another when they try it. Also, a given strategy used at one time may not work as effectively when used at a different time. Take denial for example. There is a point in the life of some individuals when denial is the only thing called for. Often when individuals start to become symptomatic with HD, they tend to deny that they are symptomatic. Not only do they deny it, their entire family may deny it too, especially in the early stages of the disease. Actually, in many instances, this is a positive thing. It’s positive in the sense that it gives the family time to adjust to the changes that the onset of symptoms will eventually require of the affected person and for other family members.

So there is a positive side to denial. But, if you stick to that kind of strategy over the long run it often starts to become maladaptive. You might see this, for example, in the problem around driving. should you stop the affected individual from driving a car or should you just stand back and wait?. Well, there is no one rule that will work in that kind of situation and thus each person has to play it by ear. If you react too quickly you may rob the affected individual of mobility, independence and the ability to move out into the world. You might constrain them, reduce their ability to interact with others and this might lead to depression and other problems. On the other hand, if you do not react and somehow take the person’s driving license away you might have to hold your breath each time they go out driving. So you might say to yourself, "I’ll go out with them and sit in the passengers seat." Let’s say it’s the husband that’s affected and the wife is sitting in the passenger seat biting her nails and she says, "Say,Hon, I think you’re just a bit close to the cars parked along the side. Can you give them just a little bit more room." I worked with spouses like that many times. I worked with an individual who was cutting it so close to other cars you could almost feel the paint on those cars coming off as they drove down the street. But, he didn’t get into an accident. At least not then. His wife was able to tolerate a lot of anxiety and thus, although she didn’t like the fact that her husband was still driving, she used denial and other ways of containing her anxiety. When he began to side-swipe cars I encouraged her to intervene before something worse happened.

In many instances it reaches a point where a strategy of denial or of just letting things be, stops working, especially around driving. When you don’t intervene when it’s appropriate to do so- and each person will have to decide for themselves when that moment arrives- you risk seeing the affected person getting into major collision or harming somebody else.

Despite my reservations, I do have three basic pieces of advice or general strategies to offer caregivers. First, don’t try to be a hero or heroine. Second, do not allow yourself to reach a breaking point. And third, allow yourself to have feelings. Let’s discuss these one by one.

Don’t try to be a hero. This means that you need to take a realistic view of your strengths and limitations. Ask yourself, "What are my capabilities and what are my limits?" People who try to function beyond their capabilities frequently find over the long haul that they cannot sustain their efforts and thus they end up feeling defeated, disappointed in themselves, and ineffectual.

One way caregivers might avoid such outcomes is to assess your external and internal resources. Ask yourself, "What kind of support system do I have realistically? Who can I count on when the going gets rough? Who can I go to when I need help?" Continued over page..............

In some families there is no one a caregiver can rely on. I don’t know how many of you are in such a situation or just do not have anyone to turn to and say, "Molly, can you come over for a few hours and stay in the house while I go out to do some shopping or run some other important errand?" I don’t know how many of you have had the experience of calling a family member and instead of receiving sympathy and assistance you end up with a headache on top of the one you already have and feeling that you’ve asked something unreasonable? Who can you count on? More than once, unfortunately, I have heard caregivers say that there is no but themselves that they could rely on, no one they could turn to when they needed to run out in the middle of the night to take care of some other crisis unrelated to the spouse, no one who could monitor the affected person in such circumstances. You can only do what’s possible given the external resources available to you. And then there’s your internal resources.

When you ask yourself about your personal strengths and limitations, how honest are you being with yourself? Are you the kind of person who falls apart when things become overwhelming or are you the kind who mobilises yourself, who pulls yourself together in the face of a crisis? Now we all want to think of ourselves as the latter kind of person. We all want to think of ourselves as being able to handle tough situations. But how realistic is that view? If you want to succeed as a caregiver, here’s an area that requires facing your strengths and limitations in as honest a way as possible.

People frequently have beliefs which ultimately turn out to be self -defeating. They have a tape running in their heads which says, "You should be able to do it on your own." or "you should be able to stand on your own two feet" or "If you ask for help you’re weak or there’s something wrong with you." All these messages are self- defeating because no one is able to carry it all on their own. In my experience, persons who generally succeed in coping with adverse situations or stress are people who know their own limitations. It is more important to know your limits than to know your strengths.

People who are successful copers know themselves. Knowing yourself means, among other things, knowing when you are about to burn out, beginning to bo overtaxed. Generally, such persons have a mental tape saying: "I can’t be a good caregiver if I can’t take care of myself." And in addition to being a caregiver they take care of themselves.

Let’s say a few words about burn out. Do you know when you’re starting to burn out? What are the things that start to happen to you when you are burning out? Some of the general symptoms of burn out are that you no longer feel any pleasure. Things become burdensome. There’s no pleasure in your actions or the usual things that used to give you pleasure. Things start to bother you more. You become more irritable. Things that don’t usually bother you suddenly begin to do so. You just can’t stand that the toothpaste cap wasn’t put back on. You can’t stand that the cup is turned this way rather than the way it should or there’s a smudge of lipstick on the rim. You find yourself not returning phone calls from your friends or from Aunty Bessie, who you usually like to talk to. You find yourself putting things off more frequently, not answering letters, not taking care of errands and so on. You know you are burning out when you start to withdrawing socially and when you’re not sleeping well at night and you find yourself drinking alcohol more than usual. These are the general things that people who are overtaxed tend to report when they are just reaching the point of "losing it".

The key to successful caregiving is not allowing yourself to reach the breaking point. This means in advance recognising that you are near to the burn out point, near to , but not yet at the edge. When you reach that early point you still have an opportunity to turn things around, To obtain the help or respite you need to refuel you emotionally and physically. Caregivers of HD patients tell me about the personal signals that clue them that they are reaching the edge. It might be a sudden migraine headache or an increase tendency to forget simple details ("I never forget to put salt into the soup, but this time I did. I knew I was in trouble.").

Another way to avoid burnout is to plan ahead especially about inevitable things. Take the driving for example. Try not to wait for a crisis to occur before thinking through your options. You know that your mate will have to stop driving one day. How do you stop or organise that? You might need to make some decisions in advance. For example, when such and such happens, that’s the time to move in and intervene. Perhaps, you will have to talk to your mate in advance so that they understand, "As soon as you clip the first fender, that’s when the license is going to go." What alternative arrangements would you have to make to compensate for this loss of mobility? This might mean investigating what resources are available in your community to help you in periods of transition.

Planning ahead also gives the caregiver a sense of control so that the tendency to feel overwhelmed can be kept to a minimum. The more you can plan ahead the more confident you will feel that you will be able to handle tough times. It’s much easier to have a plan ready in times of crisis than to be just reactive and have no time to think through the consequences of taking certain decisions.

One of the important and positive aspects of predictive testing for HD has been the ability of individuals and couples to plan ahead financially, medically and psychologically. If your spouse turns out to be a gene carrier but not yet symptomatic, the news is hardly pleasant,

In fact it’s painful to bear and you’ll have to go through a period of grief. But, most people, the overwhelming majority in fact, pull it together and get on with their lives. One advantage of knowing your gene status in advance is that you have an opportunity to sit down with your mate and while you are still capable of it make the difficult decisions about future contingencies. And from your spouse’s point of view that is far preferable than making all the decisions on their own. Decisions made together tend to have better practical and psychological outcomes than ones made unilaterally, without the input of the persons affected by the decisions.

Caregivers of persons with HD have to make tough choices which tend to leave them feeling bad about the decision and bad about themselves. I suppose the critical case is the situation involving long-term care. In the U.S. we tend to use the term ‘institutionalization’ to describe this situation, but I think ‘Long-term care’ is a much kinder, more humane way of putting it. When caregivers have to deal with that issue it touches on an enormous amount of feelings, the most prominent of which is guilt. I have rarely worked with families dealing with the long term care of a relative in which family members have not experienced a tremendous sense of guilt. It is as if they experience themselves as failures. You can no longer care for your spouse and you know to attempt to do so on your own is no longer realistic. You’ve come to the point of recognising that no one in your situation could possibly deal with what you have to deal with and there is only one kind and appropriate thing to do and that is to place your spouse in a situation where the care you can no longer provide will be given. Guilt is an appropriate feeling at that particular moment, very appropriate. When you experience guilt at that moment it tells you that in acting in a responsible way you are feeling responsible, taking responsibility for your actions. And that leads me to the third strategy I mentioned, you have to accept your feelings.

Accept the fact that you are a person with feelings. At every step of the way in caregiving you will have feelings and your job is to accept the feelings you have. Allow yourself to feel what you’re feeling. Don’t tell yourself that you shouldn’t feel such and such a feeling. I don’t know of a caregiver who at some point does not feel frustrated, who does not feel angry at their spouse, who does not harbor thoughts of harming them, who does not have feelings of resentment. When caregivers tell themselves that they shouldn’t feel these feelings, they often undermine their caregiving efforts because their judgments about the reality of situations become distorted or unrealistic. Human beings have feelings and to deal with the multiple problems caregivers often deal with evokes feelings many people wish they didn’t have. Successful caregivers accept that feelings come and go and that their angers and frustrations are justified and only part of a greater picture which includes compassion and love for the person they are caring for.

I often hear caregivers who resist placing their affected mate into long-term care say, "It’s a way of expressing that I don’t love them anymore or that I don’t care about them." As a counselor or a friend one can be very sympathetic to such feelings. At the same time sometimes people need to hear someone say that, "You need to do the right thing sometimes despite your feelings."

I think I’ll stop here and entertain some questions.

Dr Elizabeth McCusker:

Thank you, that’s been very helpful. I guess as an onlooker, one of the frustrations we feel on the caregiving side is the difficulty we have intrying to encourage people to accept what is available. In other words, we have the resources available but often we can’t get people to take that first step. So, I’d be interested in your comments.

Dr Kessler:

I’ve come across many situations like that. What I have found is that the feelings of a person have not been aired, have not been expressed. They have not been accepted by the professional. In other words, the person has to hear the message that their feelings are appropriate. Even though they’re feeling guilty or feeling ashamed or perhaps feeling like a failure because they’ve reached that point. You need to let them know that those feelings are appropriate and maybe necessary. They need the distance, because if they get that it will make them more effective. If they can’t see that feelings are acceptable to others then they can’t find any acceptance in themselves. They can’t take the next step to do the thing that would actually help them. It’s a very common problem even in psychotherapy in general. But I think that’s the step that tends to be skipped. You can’t skip that step and sometime it takes time for that. It depends on what the dominant kind of feeling is, whether it’s a feeling of guilt or a feeling of shame. Let’s say it’s a feeling of shame over one’s sense of failure. The person actually has to say those words themselves and they have to be helped to say it. If the professional comes in and verbalises it for the person, it doesn’t work. So it’s a slower process but eventually the person is able to say, "I’m absolutely embarrassed to say this, I just can’t stand my spouse any more. But I just can’t let go". The meaning of "letting go’ has to be dealt with. Generally when you deal with those kind of feelings you uncover a great deal of embarrassment and shame.

Question

I was going to relate to your remarks about when to stop your partner driving a car. I had that problem. He loved to drive his car and was always bringing the latest motoring magazines home to see which car he was going to buy next. I overcame the problem eventually because I thought if we don’t, reasonably soon something is going to happen, Continued over page..................

We might be hurt, somebody else might be hurt. So I went to the GP and I told him the problem and he said well "Bring him in and I’ll have a little talk with him". So the GP was really helpful. He said to my husband "Look we’ve got you on this medication and we’re not quite sure how you’re going to go. Are you still driving a car?" and he said "Yes" and the GP said "Well I think maybe you should just give it away for a while and we’ll see how you are down the track." And, of course, he never got back to driving afterwards.

Dr Kessler:

That’s a very nice way of putting it. I’ve seen situations where physicians have moved in and said in a very authoritarian kind of way, "You have to stop driving and you have to give up your license. Otherwise, I’m going to report you to the authorities." But that always backfires. Your way is a very sensible one.

Comment:

We’ve had the experience like that where the authority moved in straight away and took my wife’s license. But she went back to them and she fought them all the way. She went to therapy, she went to a driving test and it got to the point that they gave her license back.

Dr Kessler:

That’s a very interesting point that I haven’t dealt with. You have to know your spouse and whether or not they’re going to become passive, or whether they react in a more active kind of way. You’re describing a person who reacts in a more active kind of way.

Question:

It’s good to recognize our families as carers but when you love somebody you have to recognize their rights as well. I know that if my husband goes to respite it will be good for me. But I have tried it over the years and my husband hates it. I find it very difficult to find services that suit our needs. I have a supportive family but they have their own lives. It’s very difficult and I don’t know how to approach it. Do you have any suggestions?

A lot of affected individuals reach a point where they need a lot of stability in their lives. They can’t tolerate change. They become almost phobic, very frightened when there’s a change in their lives. I’m thinking of a man I worked with over several years. Their children were living in Washington State and they were living in California and it required them to fly up to Washington State in order to visit. It would be like flying from Sydney to Brisbane. He would do it fine but as soon as he walked out of the house he would become very frightened and say I can’t go. It began to limit his wife’s ability to see her own children. So they called me up and this is what I did with him. I would do home visits first of all. And I would invariably say, "Danny, come on, I need a walk. I’ve been sitting in the car all day. Come on out for a walk with me", to take him out of the house. I’d walk around certain blocks and I would talk to him and he would talk to me. As we walked, he would tell me what his neighbours were doing and so on. And I would slowly, slowly get him to walk further away from the home.

Then I started to say "See how well you do when you go out of home? You don’t always have to stay home. You don’t always have to sit in front of the television set". It is quite a problem. You have that same kind of problem with a lot of neurological disorders, a lot of chronic illnesses. People suddenly become afraid to leave the home or afraid to deal with change. You need professional help when those things happen. So in your situation two weeks might be much too long for your husband to leave. He may need to be started on one day or even half a day.

He used to go to day care one day a week and then he just stopped he just refused to go.

Dr Kessler:

Call a professional in to talk to him and find out why he stopped going. There’s a reason why he’s stopped going. It’s just not something that has no reason to it. There is something that he’s beginning to associate with day care. There’s something there that frightens him. It could be something quite simple that can be changed. But someone has to talk to him to find out what it is. Is there something that scares him there or is there something that disturbs him or concerns him?

When your thinking starts to change because brain cells are not operating, reality gets distorted. It gets misinterpreted. So, it’s like the flower arrangement, here. This way it may be fine. But if you turn it that way it could be interpreted as having some meaning that’s not quite obvious to you or me but would be very obvious to them.

What I found in talking to this man Danny was that he had some real good thoughts about what was frightening about leaving home and so on. He had an additional problem, and I’m sure some of you have the sane kind of problem, where he didn’t want his wife to work anymore. He didn’t want her to leave the home because when she left the home he started to feel very unsafe. What if the house caught fire? What if a burglar came or something like that? It was very, very difficult for him. So, she had to slowly make arrangements for somebody to pop in every half-hour or something like that. That would be enough to mollify him or enough to make him feel safe so that she could continue her work. After a while she moved her work situation into the home so that she could stay both at home and work.

Question:

Some of the comments you made are almost as if you have been reading my mental history. I’ve recently had an introduction to respite care. My wife went into respite care for a fortnight and I think she was OK but I was the one that came away depressed after it. I felt guilty that I’d put her in there and then gone home to do whatever I had to do. I appreciated the reason for it but where does concern end and self-pity begin?

Dr Kessler:

I find it interesting that you use the word self-pity. I’m not sure I know what you mean by that.

Well, you said that when you get depressed, that’s a sign that you’re burning out. You start to get very concerned about what’s going on. You start to think to yourself, "Well my wife is quite happy with what’s going on, all the concern is on my side." Subconsciously, am I really concerned about her or am I really concerned about what I’m having to do? The fact is that my life has changed. There’s nothing that I can do for her. I’m just wondering, am I wrong? Is it self-pity or am I really concerned about her? Do you follow what I mean?

Yes, How do you feel when you tell yourself that your reactions are ones of self-pity as opposed to how you feel about yourself when you say, "I’m feeling depressed because I’m concerned about her"? I think maybe if you ask yourself that question you’ll probably find that you don’t feel as good when you say "I’m feeling what I’m feeling because it’s self pity" as opposed to "I’m feeling like that because I’m not acting as a responsible husband should act", or something like that.

Response:

The whole idea of respite care is to give you a break but I’m up there every other day which is against the whole idea of it.

Well, you know something important about yourself. You know you have difficulty separating from her. It’s not that she has a difficulty separating from you. You have the difficulty separating from her. Know that about yourself so that anytime you’re going to be separated you’ll know you’re going to have that feeling. If there’s a bottom line message I want to leave you with it’s that you must take care of yourself. You must take care of your own health. You cannot be a caregiver unless you are functioning well yourself. Someone who, out of concern or out of love for their mate or their spouse neglects themselves, doesn’t find areas of satisfaction in their life, doesn’t find something that refuels them on an emotional level, willeventually not be able to be a functional caregiver. So you must take care of yourself - that’s the primary thing. Several of you have already pointed out something very important. The affected individual will either intentionally or unintentionally make you fell guilty. You have to know that that’s part of the process. Despite that, you have to find ways of controlling your feelings of guilt so that you can plan ahead - so that you can move ahead. Now it may slow the process down when you have these feelings, when your mate makes you feel that way. It does slow the process down. But I think that’s the meaning of it all - you’re moving too fast, I can’t handle it. That’s what the spouse is trying to tell you. I can’t handle it. So you have to move a little slower. That’s why I suggest that two weeks may be much too long for him, much too long. There’s a good example where you’ve got to slow the process down. Maybe it has to be one hour or an hour and a half, slowly increased over a longer period of time. Maybe that will work.

Question:

I haven’t taken any predictive test so I don’t know whether I have the disease or not, whether I’m a carrier. How can I or more importantly my wife prepare better for the future?

Well that’s an easy one. Join the Association here, come to meetings, educate yourself about what the disease is, what the cause of the disease is. Be sure that the things that need to be in place in terms of insurance, etc are in place. I’m not sure what the situation is here but if you were in the U.S. I would say make sure that you have your health insurance in place, your health insurance in place, for you and your spouse. Make sure that you have a way of obtaining an income and things of that nature. You have to do the things to make you more conscious and more aware of the facts in the matter. You should know where you and your spouse can get support should it turn out that you are a gene carrier. If you are not yet symptomatic then I would use a stategy I mentioned earlier. That is, both sit down and plan ahead so that you can plan the shift of power, the shift in decision-making and at what point all those shifts will start to happen. Is that clear?

Comment:

I believe you can plan to a certain extent but I also have a belief that you don’t know how you’re going to react to the clinical pathway as it deteriorates. Most of the time what you have to do is say, "Yes, I will survive and I will find resources. I’m going to keep Dad at home or we’re going to support Mum and we’re going to do everything we can. Because we want him to be at home, we love him".
    But there will be a point in time perhaps when we can’t all do that. We won’t know that until we get to it and we will probably push it to the point of very near burnout. I believe that is what most people eventually do.  I accept the point that we’re getting somewhere. Yes, we do have an Association. Yes, we do have support resources - and pulling together must help. Probably, we’re all for my Mum - she’s a wonderful carer - but she’s going to eventually need the assistance of professional carers. The person with HD in our case, is our Dad and much of what we do revolves around Dad. He’s wonderful and we love him but we also love Mum. We’re going to have to take care of both of them.

I think you can plan, but most of us would plan to take care of them in their home. Because they do not like change and to keep things as they are.

I think planning is good but I would also like to say that most of us don’t know hoe we’re going to react or how much we can cope with until we actually live it and experience it and share it with others.

Dr Kessler:

Yes, I don’t think we’re contradicting each other at all. As I listen to you I say how fortunate you and your family are and there is caring and there is love there.

Response:

That doesn’t make it any easier because at times we feel we’re useless and helpless, as I think we all do.

There’s a thing that you learn about life - it’s not easy. There’s no bed of roses out there. Loss and grief and pain are part of life as much as love and caring. In fact, the deeper you love sometimes the deeper the pain. That’s what we have to accept in ourselves - that we’rer allowed to feel those things.

Thank you very much