The Vacuum Caused by Dementia

 

Recently I was at an event where a guest with Frontal Temporal Dementia was present. This is a brilliant man who has had the disease for over four years and is now left with a rapidly progressing, debilitating disease. The guests knew he had dementia although not necessarily the type. As is often the case, most people when thinking of dementia, were expecting Alzheimer’s Disease and seeing someone similarly afflicted. Many of the people were actually relieved to see how well he is functioning. This conclusion was based on the fact that he knew their names and was very sociable. The fact that he is incapable of speaking even the briefest of sentences or expressing himself verbally was not factored into their assessment. Frontal Temporal Dementia presents differently from Alzheimers. The person doesn’t become withdrawn. They lose all inhibitions – it does, after all, affect the temporal lobe – are unable to find words, and lose their muscle strength.

This is just one of the many isolating experiences caretakers for people with dementia, any kind of dementia, face: the gap between their reality and other people’s perspectives.

Friends who have relatives with dementia have described how after encountering friends or neighbors on the street, people will remark that the person with dementia seems to ‘be not that bad’. They base that on the fact that the person has been able to nod at appropriate times or cover for their lack of understanding in other ways. The caretaker however, knows that person can no longer watch or comprehend a television program and is incontinent, a very different perspective. It’s often these disconnects in reality that make the caretaker feel isolated. They are seeing the ravages of dementia up close while the fleeting glance can appear very different to those who are ill-informed or see a glimpse of it. Whatever the kind of dementia, it’s an isolating experience living with someone who has dementia.

A friend of mine who has a sister with early onset Alzheimer’s pointed out another aspect of dementia: unlike other debilitating and fatal diseases, those with dementia cannot express their wishes which creates a conflict-causing vacuum. I have seen this up close and it is a difficult situation. A person gets dementia and, even if he/she has clearly planned and expressed his/her wishes, family members and friends ‘know’ what the person would want. (If they haven not planned for the future, the situation is worse.) She hears, “I know she would want…” all the time, whether the person actually has some insight or not. Although every one may be well-meaning, the assumed desires of the patient may put the family members in conflict over the care of their relative. In my friend’s case, she has the power of attorney but needs to consider the desires of her young adult nephews and, in this case, her sister’s interfering ex-husband. In cases where adult siblings do not agree on the care and wishes of their parent, disagreements can fray relationships and leave the disabled parent without the care and services they need while the children argue about it. There are so many sensitive decisions to be made: taking away the driver’s license, insuring the person’s safety, getting an aide, deciding on the right living situation, getting the finances in order. These decisions all require a united family or at least one that is in agreement on important issues.

Advanced planning and expressing one’s desires about care are so important but often an avoided conversation. Caring for a person with dementia is stressful enough. A facilitated conversation might ease the way for moving ahead and getting the person with dementia the needed care. It is best to fill that vacuum with consensus.

Gail Goodman

 

 

 

 

Fear

Fear is a strong emotion. We can experience it walking down a dark street and we can experience it watching a suspenseful movie. We can also experience extreme physical symptoms with fear. Our heart beat may accelerate causing panic attacks, our palms may sweat, we may feel weak and dizzy and we may become very anxious if the fear escalates. No matter what the symptoms may be, fear is an emotion that most people would like to avoid. And the fear you feel, whether real or not, can turn into anger.

Family members can also experience fear when there is conflict within the family. For example, let’s say your mother’s dementia is progressing and you view your sister’s care for your mother inadequate. Yet, for some reason, you are afraid to discuss the matter with your family. Perhaps, as children, your sister was one tough cookie and you never won an argument with her. Or the sight of your mother’s condition scares you so much that you can’t begin a conversation about her care. So instead of doing something you sit in silence and watch things deteriorate.

Having these much needed family conversations is so important for you, your mother and for your family relationships. Yet, the fear keeps you silent until a crisis happens and then the family is in chaos and unable to arrive at the best decision.

Family Mediation has been effective in helping family members manage their fear in order to resolve family conflict. When family members are at a mediation session, a trained neutral mediator assists in creating a safe platform for everyone to air their concerns without being belittled and dismissed by other family members. In fact, ground rules that specifically address this matter are addressed at the beginning of the session. More importantly, the mediator will make sure that each family member listens to and understands what is being said so that they can respond in an appropriate meaningful way. Once this process begins, the fear and potential anger dissipates and family members begin to relax, feeling confident that they are being heard. Finally, the family is on the road to reaching a mutually agreeable resolution.

At one family session I mediated with my partner, Gail, one daughter was initially afraid to be in the same room with her sister. She experienced physical and emotional fear. Each sister took a turn explaining their concerns about the care of their mother and the role each daughter had in that care. As mediators, we made sure that the details, feelings and reasons for these concerns were expressed. After going back and forth making sure that everyone was on the same page as to what was being said, the way in which the sisters communicated changed. They no longer were angry, fearful, or resistant to the process. At the end, the sisters were able to reach an agreement regarding the care of their mother and they even hugged one another.

Rather than reliving childhood family dynamics in fear, family members can communicate effectively with the help of a family mediator. Therefore, the next time you are afraid to talk to a family member, ask yourself if the fear you are feeling is working for you. When you realize it isn’t, think about family mediation.

Different Conversational Styles: A Recipe for Conflict

A Recipe for Conflict: Different Styles of Communication

Deborah Tannen, a linguist, has written extensively on issues of communication and the difficulty people have talking to one another. She’s written about communication between couples, among families, between mothers and daughters and between sisters. It’s so interesting for me to read these. I relate to them from my own family situations, have seen my friend’s families reflected in her writing, and, as a mediator working with families, I hear the voices of people with whom I have worked.

The points Ms. Tannen make are so relevant to our lives. She writes about the power relationship that plays a role in interaction with mothers and daughters. How often have we bristled at the criticism from our mothers, whose approval we seek, while accepting the same remarks from our friends? While many people have written about sibling rivalry, Tannen writes about how that rivalry and the roles assigned to us as children effect our communication as adults.

Through our mediation practice, we see how the competitiveness of sisters, starting from a young age, impedes their ability to talk to one another without the past getting in the way. This so often boils down to the proverbial, ‘Mom always liked you best’, a conversation stopper for siblings. And then there are the labels that are given to children and stick with them even when they are adults. Giving kids titles like ‘the smart one’ or ‘the talented one’ is likely to cause the resentment which surfaces over the years and obstructs any meaningful communication. Each sibling is an individual and has his/her own conversation style. Some people are reserved when they talk, others aggressive, some emotional and these style differences, when interacting, can lead to ineffective communication. Sometimes the conversations cannot get past the style to the substance. After childhood, siblings can avoid dealing with these life-long antagonisms but later in life they may resurface and interfere with necessary conversations.

As mediators, we have seen siblings who are now confronted with the need to talk about serious issues regarding their parent’s well-being or estate matters. The inability to get past the old rivalries, resentments or ‘he said, she said’ conversations keeps them from being able to talk, have relationships with each other and their nuclear families, and deal productively with issues that require a resolution. For some people, a facilitated conversation is the best options for preserving relationships, resolving conflicts, making joint decisions, and being able to move forward, rather than letting the past get in the way. Tip: Consider reading Ms. Tannen’s book before those difficult conversations and make an outline that can guide the points you want to make and sticks to the issues.

 

DEAL MAKING VS. MEDIATION

We’ve heard a lot about Donald Trump’s deal making skills lately and how he plans, as President, to make huge trade deals that will benefit the United States. However, after all this talk about how Trump will make these successful deals, I am left with the feeling that Trump is only interested in a deal that gives him what he wants with no regard to the needs of the other party. As an alternative to “deal making,” mediation provides an environment where there is an equal balance of power so that parties can reach a mutually agreeable resolution.

Deal making and mediation are similar since they both provide a process in which parties can reach an agreement or resolution. However, there are significant differences in how these procedures achieve this goal. The deal making/negotiation procedure tends to focus on how you can get your opponent to agree with your terms. That would be a successful agreement. On the other hand, mediation, with the help of trained mediators, encourages parties to have an open and honest conversation so that everyone understands the positions and underlying concerns being expressed at the table. Once that is achieved, the parties can then become creative and discuss a resolution that benefits both parties. A mediated resolution does not always mean that there is a compromise where a party has to give up something to reach an agreement. Rather, through mediation, the parties agree to terms that they both believe give them the best resolution, thereby establishing a win-win situation.

Unlike negotiation, mediation provides a process where parties are more likely to feel like they both got a good deal. Walking away from the table with that feeling can only ensure that the parties will comply with the terms of the agreement. More importantly, such good feelings will preserve the parties’ relationship, whether they are family members or business associates.

Ruth Weinreb

Family Therapy vs. Family Mediation

As a mediator who specializes in elder/family mediation, I frequently get asked to compare family mediation and family therapy. Usually a family member tells me that the mediation process sounds like therapy. While the two processes share certain elements, they are completely different.

MedicineNet.com gives the following definition of family therapy , “Family therapy: A type of psychotherapy designed to identify family patterns that contribute to a behavior disorder or mental illness and help family members break those habits. Family therapy involves discussion and problem-solving sessions with the family. Some of these sessions may be as a group, in couples, or one on one. In family therapy, the web of interpersonal relationships is examined and, ideally, communication is strengthened within the family.”

On the other hand, family mediation is about resolving a dispute. It is about family members finding a way in which they can reach a mutually agreeable resolution to a dispute. The dispute can be about the care of an elderly family member or the sale of the family summer home. Family mediation does not dwell on family dynamics, the role each family member plays in the family or family history. Moreover, unlike family therapy, family mediation is a shorter process. Families come together for only a few hours in order to find a resolution.

Family mediation and therapy do share some elements. Both are about communication and they both provide a safe environment where family members can engage in open and honest discussions. Family therapy and mediation also have a common benefit of improving family relationships and the way families handle future conflict.

Although family therapy and family mediation appear to be similar because they both involve families and the way families communicate, the orientation of each process is significantly different. Families need to be cognizant of these differences in order to select the process that can best address and meet their family needs.

Ruth Weinreb

Why Refer To Us

We practice family mediation with a specialty in Elder and Adult Family mediation and Parent and Teen mediation.  Our focus is on communication between family members and preserving family relationships. Most people associate mediation with labor disputes and divorce. It’s a great product we are selling, but most people do not know what it is. Instead they make assumptions, and they are often so far off the mark.

Mediation is a form of conflict resolution. There are a lot of similarities between what we do and what mediators are trying to accomplish in the Middle East. (A mediator in that region told me he would rather work with the parties from countries there than the combative families we see.) In both cases, people can not reach agreement on an issue, are stuck in their positions, and can no longer speak civilly to one another without someone facilitating the conversation and insuring it’s productive.  Continue reading Why Refer To Us

The Difficult Conversation

As a member of the sandwich generation, I often hear my friends describe a family situation where an elderly parent is showing signs of becoming frail and forgetful and being more challenged by everyday tasks. In all these family situations the parent, or sometimes both parents, live alone. A caregiver may visit for a few hours each day, helping with shopping, meals and doctor visits. However, the geographical distance between the parents and family members is great. Although my friends recognize the vulnerability of their parents, they seem to be afraid to move forward to discuss a plan of action for the future. As a wise person once told me, our parents will never be as young or healthy as they are today.

So why are adult children afraid to talk to one another about the future care of their aging parents? Why are adult children afraid to discuss with their parents the possibility of moving closer to a sibling, the extended hours of a caregiver, the move to an assisted living facility or giving up driving? In some families, open and truthful conversations are rare or nonexistent. They have no practice in having real conversations about real issues. In other families, the relationship between the adult children is brittle, lacking trust. And some family members are just in denial and don’t want to deal with medical and care giving issues of their parents, which can feel so monumental at times.

As mediators, we repeatedly see family members in pain as they struggle to navigate the aging process of their parents. Even with the help of a geriatric care manager, the family members get stuck for whatever reason, and are unable to talk about these important family matters. As a result, the family goes on as if everything is fine and everyone is able to manage until a crisis erupts. While mediation is not therapy and will not address the psychology behind a family member’s behavior, it does bring family members together, perhaps for the first time, to openly address shared family issues that need to be discussed before things get out of hand. Talking about these important issues before a crisis will ensure an opportunity to timely and rationally analyze the situation and arrive at a sound decision.

As our parents, or relatives, age, it is time for the family to unite to create a future plan that works for the entire family. Family members need to have these difficult conversations in a real way to ensure that their aging parents are safe and that the family relationships survive. Mediation is a successful tool used to give families a way to effectively manage the aging process we all experience.

Ruth Weinreb

Why I Should Have Chosen Mediation

My friend, let’s call her Cathy, has had a difficult relationship with her widowed father for a while now. She is part of an informal, blended family. Her father lives in a nearby city and is not married, but has been living with a woman for several years. The father lives in the woman’s house, spends summers at her summer house, is close with her daughter’s family, and overall has slipped comfortably into his significant other’s life. Cathy has been devastated. According to Cathy, her father’s girlfriend, let’s call her Mrs. X, has made no attempt to draw Cathy and her nuclear family into this extended, blended family. Instead of her traditional family holiday celebrations, the whole new family is included in holiday traditions that they would not normally celebrate, since they are not all the same religion. For Cathy, this has created a lot of resentment towards her father. Doesn’t he see what’s happening? Doesn’t he see that she’s left out. Why doesn’t he stick up for her? She and her father had some awful blowout fights and can hardly say a civil word to each other. The tension has gone so far as to effect Cathy’s brother and his family. Last year, I suggested to Cathy that she consider mediation so they can learn to listen and speak to one another  and come out with a plan to go forward. Instead, she convinced her father to try therapy with her, and each committed to two months. Her father didn’t make it past the fourth session.

Last week I sat down to ask her why she didn’t chose mediation. Interestingly enough, her answers were based on a misunderstanding of mediation and the process. Where as a friend did I go wrong?? I think we both made assumptions without ever clarifying the options. She went to therapy because she needed to get some of the old hurts and pain her father had caused dealt with and discussed, even though he has alway opposed doing that. Her therapist thought that this could work for them. It didn’t. Her father didn’t believe in therapy to begin with. Her father has a stereotypical view of therapy and who needs therapy and it doesn’t include him. This was not a realistic method for him to resolve any problems. His biases were already in place. She didn’t go to mediation because she didn’t think she would have the opportunity to communicate her pain and hurt he has caused her.

Now I explained the mediation process. How we interview each of them beforehand to find out their perception of the issues and then schedule one open-ended session where the issues are discussed in a non-confrontational way and hopefully, agreements are reached and the parties are able to talk to one another after they leave. Emotions come out, and there is room for it in the process, but we, as mediators, are going to keep the parties talking and focused on the issues they have identified. Cathy had an immediate problem: she and her father were losing their relationship. We insure the parties speak and listen to one another, and actually hear one another. Mediation is a problem oriented process.  It helps people resolve their conflicts, focusing on the problem at hand, and gives the parties a means to move ahead. Cathy would have been able to communicate her emotions and hurt, but in the end she and her father would have learned how to talk and listen effectively , be considerate of each other, and avoid ‘pushing each other’s buttons’.

Without asking, Cathy said, “we should have gone to mediation.” So, what were the selling points that indicated this was the better route? A la Letterman, let’s start with:

  • Number 4. Her father would have been more open to a process that wasn’t a therapeutic framework. Given his original biases, he was less likely to function well in that context.
  • Number 3: Although it was important for her to have her father hear her hurt and what the issues were for them, it would have taken them far longer than the time allotted, and possible, for them to really get into and resolve the roots of some of their problems.
  • Number 2 is the realization that she would have gotten skills that she could use when future problems arose. Her pain and emotions would be part of the session but the emphasis would have been on how they could go forward, which was the immediate problem for her.
  • And what she consider as the all important Number 1 is the ability to resolve the problems in one session. She left frustrated every time the therapy session ended and nothing was resolved. Whatever momentum they achieved, was lost when the time was up. She feels the opportunity to work through in one long session might have been a key point in helping them work through their issues productively.

Next time, I will try to be as clear with my friends as I am in my formal presentations.

Family Tensions During the Holiday Season

The holidays are fast approaching. For some this is a happy time, getting ready to be reunited with family. For some, it’s a dreaded time, knowing that family get-togethers can inflame tensions that lay dormant, or are long distance, the rest of the year.

Susan used to love the holidays. She took over holiday dinners after her Mom decided it was just too much work. She lives nearest to her Mom and was happy to assume the responsibility. Unfortunately her mother’s health has been declining in the last couple of years. She has been getting more and more forgetful and disoriented. Now, in addition to her job and looking after her own home and family, Susan has been taking on the responsibility for many of her mother’s household chores and her healthcare, the frequent doctor’s visits, and her medications. The stress is too much. It is time to consider other living arrangements or, at the least, an aide. But two of her siblings insist that Mom sounds okay to them. Holidays have become a nightmare. For the last two years, she and her siblings have argued about their mother’s care and the problems never get resolved, things just always seem to get worse. Surely this year will be a rude awakening for them; Mom is noticeably and undeniably worse.

Maybe your family is experiencing a similar situation. Or maybe you know a family who is struggling with a similar problem.

For some families, it’s the tension between the adult children and Mom, who is caring for Dad. The emotions make it hard to accept what is happening to Dad, leaving the children to question the decision-making of the parent in charge.

Or the brothers and sisters who get together and question the decisions made by the one who has assumed the role of primary caregiver.

For some, this is the first time in a year that they are confronted with the condition of a parent whose disease has progressed, and it’s a tough reality to face. They can no longer put off the inevitable decisions that need to be made. It’s now a question of safety.

There are so many difficulties that arise when a family member is diagnosed with dementia. Anticipating the future, there are decisions to be made, and a continuing need to make decisions as the disease progresses. These decisions often strain the relationships among family members. The fights can go on for months or years without any decisions being made. In some instances, it takes a crisis for the family to act. In fits of anger, a brother or sister might resort to the courts, hoping to gain control of the situation. This is costly, time intensive, takes a long time to resolve, frays the relationships even more, and ultimately leads to a decision that is dictated to the family. There is a better option.

In recent years, elder and adult family mediation has been recognized as a successful means of dealing with family conflict. It has become an accepted form of conflict resolution. Articles in The New York Times and The Wall Street Journal talk about adult siblings who have solved their family problems through mediation.

It is a voluntary, confidential process for resolving disputes. Families get together with a neutral third party who facilitates a conversation resulting in the parties creating an action plan: what needs to be done, who needs to do it and when it needs to be done. There’s no right or wrong: everyone’s point of view is valid. It’s a chance for family members to discuss the issues in a non-confrontational conversation, explain their concerns and positions, and be empowered to make their own decisions. Aside from the fact that mediation is more cost effective than litigation and takes less time to resolve matters, it preserves relationships that will be, in most cases, irreversibly damaged by the adversarial, aggressive legal option.

Mediation is not therapy. It is a problem-oriented process and does not attempt to address deep, underlying problems in sibling relationships. There is no blame, but there is an acknowledgment of each person’s opinions and concerns.

Parents of all ages often lament that their children don’t get along.. Parents hope that as their children age, the family stays intact. It is a gauge of success for a parent. Mediation has been proven to help elderly parents reach that goal for their children.

 

 

 

 

 

 

Why Mediation Matters by Ruth Weinreb

I graduated law school 28 years ago and was looking forward to a career in litigation. I had taken classes in evidence, civil procedure and trial advocacy and was excited about litigating my first trial. After a short period of time, I was handling my own trials, loving it. I enjoyed the details of putting together the evidence, preparing the witnesses and sparring with my opponent. I even enjoyed writing the briefs. But after 28 years of litigation experience, 28 years of parties waiting three years for a final Order, and 28 years of parties not receiving a full remedy, I realized that mediation offered more than a viable alternative to litigation. Continue reading Why Mediation Matters by Ruth Weinreb