Still Alice

A number of books have been written by family members who observe the deterioration of a loved one or friend who has Alzheimer’s. But “Still Alice” by Lisa Genova is the first book I have read which describes the experience of losing one’s memory through the eyes of the individual herself. This incredible novel is Lisa’s first work. She has a Ph.D. in neuroscience from Harvard. Her extensive research is clearly evident. Not only did she work with professionals in the field but through the Dementia Advocacy and Support Network, she spoke daily with people suffering from Alzheimer’s.

“Still Alice” is a novel narrated by the main character, Dr. Alice Howland, the eminent William James Professor of Psychology at Harvard University. Alice is an expert in psycholinquisitics who begins to notice strange things happening to her. While she is on a run in her Cambridge neighborhood she finds her self lost and confused. Through her eyes we experience her decline from a noted scholar to a woman who does not know her husband and children. It is a frighteningly realistic journey. As the son of an Alzheimer’s patient I can clearly identify  the behaviors she begins to experience.

In addition to her own behavior we observe the devastating impact the disease has on her husband and adult children. Plans made when she is first diagnosed become a shambles as the family is shocked by her swift decline. Lisa Genova also stresses the importance of support groups not just for families of Alzheimer’s patients but for the patients themselves. There are very few outlets for these people to the share the fear and confusion they experience. We are often more concerned with the family’s expression of grief and overlook the patient’s own reality .

I strongly recommend this book to anyone who has any contact with an Alzheimer’s patient. it will give you a much better understanding of what it is like to stand in their shoes. Nothing I have read evokes such powerful emotion and insight.

Solve Family Disputes with Elder Mediation

Mediation is the process of bringing two or more parties together who are seeking to resolve a conflict. The mediator’s role is to facilitate communication between the parties and help them discover a solution . The mediator’s job is not to solve the problem or impose a solution. . The process is completely voluntary and any of the parties can withdraw at any time.

Mediation can be very helpful in dealing with issues that adult children and their elderly parents face every day. Is it time for the parents to sell their home and move into an assisted living facility? Which child should provide care if a parent wants to stay in their home? How much care does a parent need? Is there disagreement among siblings as to what to do? 

A good mediator will not place blame or responsibility on any one party in the mediation. Through a process of asking questions and soliciting discussion the mediator will help the parties come up with a solution that works for them. The mediation will not work unless all parties agree that the solution is appropriate.

In the past most mediation was done only by attorneys. A new field is developing now which allows professionals from other fields such as Geriatric Care Managers, Financial Planners and Clinical Social Workers to become mediators. Each state has specific requirements for individuals to be classified as mediators. Check with your local senior center, council on aging or the internet to find mediators in your area.

Elder Abuse

Many elderly people rely entirely on family or other trusted individuals to help them. Whether it is for physical needs or emotional needs, as people grow older they tend to need more and more help from others. This dependence on caregivers or family members makes an older person more vulnerable for abuse.

For example, an older person relying on her children to provide meals and transportation and help her with financial decisions finds it difficult to complain when one of her children takes advantage of her. If, for instance, the child takes her money, hits her or neglects her care, the parent may be threatened with loss of support from the child if the parent complains. The child may also use threats of violence to keep the parent in line.

It is estimated that 5% to 10% of elderly Americans are suffering abuse. Much attention has been focused on abuse in nursing homes but most of the elder abuse in this country is at the hands of family members or other caregivers in the home.

Signs of Abuse:

• Unexplained bruises, welts, fractures, abrasions or lacerations
• Multiple bruises in various stages of healing
• Multiple/repeat injuries
• Low self-esteem or loss of self determination
• Withdrawn, passive
• Fearful
• Depressed, hopeless
• Soiled linen or clothing
• Social Isolation

All states have agencies that receive complaints of abuse. In some states failure to report abuse of the elderly is a crime. To contact an abuse complaint department, call your local area agency on aging. To find an area agency on aging in your area go to http://www.longtermcarelink.net/eldercare/ref_state_aging_services.htm

Moving a Mom with Alzheimer’s

 After my mom returned from her stay in the hospital with a virus last March she began to deteriorate. She had contracted a urinary tract infection in the hospital and it dramaticallyaffected her memory.

We began round the clock aides and continued that for almost a month. The changing of aides every 12 hours confused her even more. She forgot when they were coming and what their names were. And it was costing us over $12,000 per month. So we made a critical decision. We decided to move her to an Assisted Living Facility close to our home on Cape Cod that specialized in working with memory impaired residents. We were very concerned that she would resist the move.

My wife picked her up and told her she would be staying at the facility until she got her strength back. A week before the move we met with the Executive Director, discussed the transition and selected her room. The Director told us that she might have some difficulties in the first few weeks but that resistence would be shortlived.

Sure enough, when she arrived she began telling the staff  that she wanted to go home. The first week was very painful. We wondered if we had made a terrrible mistake. But with the persistence of the staff and our reassurance she adapted to the new setting after a few weeks. Now she is very happy with her new friends, and is only twenty minutes from our home (instead of 3 hours).

Making decisions for your parents can sometimes seem awkward and difficult but many times it has to be done. It is very uncomfortable to experience a reversal of roles and become the parent of your parent. But in our case my Mom would have continued to deteriorate  in her previous setting. But now, several months later, we are certain that it was the right decision.  We know she is in good hands and is in the right home for herself and her family.

Moving Mom to Assisted Living

Four weeks ago my mom contracted a stomach virus and was sent to the hospital to recover. While she was there the Doctors discovered that she also had a urinary tract infection. After a week in the hospital she was sent to a nursing home for rehab. When I visited her there I noticed that her memory had deteriorated dramatically. She thought I was my Dad (who died 10 years ago) After three weeks in rehab. she had gained enough strength to return to her independent Living Retirement home. But we were told that she would need round the clock aides for a few weeks.

A week has gone by now and it looks clearer that she will need extensive care for some time. Using aides from a service firm is costing her $400 a day. Her memory has improved somewhat but she is still confused and gets up several times during the night to see if the door is locked and to go to the bathroom. We cannot continue to pay for private aides because it will end up costing $12,000 a month.

Unfortunately we live 3 hours away from Mom’s home. We have decided we have to find a facility closer to us, possibly an assisted living facility that helps those who are memory impaired. The most difficult step now is to convince her to make that move. She has a number of friends in her community. But the real question is will she miss those people? Will another move cause her fragile memory to deteriorate even more? Do we need to tell her what to do or get her approval.?

We are meeting with her doctor on Friday. Out of that meeting we may convince her that the doctor recommends that she move close to us. I am very anxious about telling her she’s got to move. I don’t know how she will respond and what the result will be. I know one thing. The current situation cannot go on for very long or her assets will disappear and she will have no choices.

Preparing Yourself For The Family Meeting

Once you have created an agenda for the Family Meeting and discussed it with your parents and their trusted adviser, you are ready to have the meeting. Although it seems like a very difficult and perhaps impossible task, I assure you that once the Family Meeting occurs, everyone in the family will be thankful. For many families, issues like finances and death have carefully been avoided at family gatherings for years. But it is on everyone’s mind. It’s like the big white elephant that sits in the middle of the room that everyone tries to avoid but cannot overlook.

Once communication has opened up, a burden has been lifted from the family. There is a lightness and freedom to discuss topics that were left unsaid for a long time. Future family gatherings will be less stressful because doubt has been removed and everyone knows where he or she stands. Your parents will experience much more comfort and less anxiety facing the problems of growing old knowing now that the family is working with them.

You may find that one or two family members will try to undermine the meeting, using the excuse that it will upset your parents or will uncover old issues that shouldn’t be discussed. But don’t let them deter you. Consider the alternative. Do you want to keep everyone in the dark until after your parents have passed away and then deal with everything in a crisis mode? Or do you want to discuss things rationally and clearly with your parents and siblings so that everyone is included? The choice is yours.

But if one of your siblings does not want to participate or warns you that an open conversation with your parents is dangerous, thank them for expressing their opinion, but do not be deterred from having the meeting. Encourage them to attend. Consider either audio or video recording the meeting and providing them with a copy. Get them involved in any way you can. You do not want them coming back to you five years after your parents have died and inferring that everything was done your way and they didn’t have any say. Don’t give them that weapon to use against you.

Elder Mediation Resolves Family Conflicts

“My daughter is insisting I move in with her,” complains Martha. “She just wants to control my life and take away my freedom,” she continues.

Jenny, Martha’s daughter worries that her mother keeps falling, and fears one day she will break her hip or hit her head.

“I’ll take my sister to court before I will let her get control of mom and my inheritance,” exclaims Jim about Jenny’s desire to move her mother in with her.

It is amazing how quickly formerly cordial relationships between family members will sour when the family has to deal with care of elderly parents or inheritance at their death. Sometimes the consequence of dealing with the final years of elderly parents can break families apart and create long-lasting animosity.

The National Care Planning Council has seen an increase in requests from caregiving children for help in solving disputes with siblings. In one case, the caregiver was being sued by her sister for abusing their parent and stealing the Social Security checks. In another, the caregiving child would not allow siblings to see their mother, claiming they would take advantage of her.

A lot of times it is a “she said,” “he said” situation with neither party really understanding what the elder person needs or wants.

Some families find it hard to communicate with each other when their parent is in need of care. Perhaps when they grew up together they were not accustomed to come together as parents and children to work out problems. And now those children are older and taking care of parents and they don’t have this family council strategy to rely on. It may seem unnatural to them. But that is often exactly what is needed, especially in situations where perhaps one child is caring for the parents and the others are left out of the loop.

Children all have a common bond to their parents and as a result a common obligation or responsibility to each other. When disagreements arise, suspicions begin to grow. Suspicions or distrust often lead to anger and the anger often leads to severing the channels of communication between family members. This can occur between parent and child or between siblings or between all of them.

It is often at this point that a neutral third party can come in and repair the damage that has been done and help correct the problems that have come about because of the disagreement.

A practitioner experienced in elder mediation is a perfect choice for solving disagreements due to issues with the elderly.

Dementia Dilemma

For the past several months my 88 year old Mom has had difficult moments. On a few mornings she woke up and thought she was in her old home  and not at the independent Living Community she had moved into. Once in awhile she thought she was at the Senior Center waiting for a friend to pick her up, but every time I went to see her she recognized who I was and seemed relatively lucid.

Then things changed. She caught a very uncomfortable stomach virus and had to go to the hospital to get treatment. While she was there her alertness diminshed dramatically but she still recognized who I was.  After four days in the hospital she was moved to a rehab. facility. I went to visit her there and she surprised me by calling me by my father’s name. I had become my father. After an hour visit I told her that I had to go home and would be back in two days. She was very angry with me expecting me to stay there with her. There was nothing I could do to diminish her anger. She expected her husband to stay with her or at least visit her every day. When my father was very sick with Parkinson’s she visited him every day in the nursing home and she expected him to do the same for her.

How do I respond? Do I go along with her and become my father for her? Or do I continue to remind her that I am her son. She was very angry today when I called her, asking why I was not with her. Then she asked me how long we had been married. I was in a no win situation. I told her I would see her three days this week and she was very unhappy, expecting more.

Dementia is a very elusive force, slipping into the background one moment and returning with power a few hours or days later. It seems to appear in stages, at first a moment or two here and there, then just in the mornings and now as a full time agressor. I felt very confused and depressed when I first noticed that my mother no longer recognized me as who I was. I had always feared that this would occur someday. But now it is here and I must come to grips with it. Should I embrace it as part of my Mom’s existence or fight it and her every chance that I can?

Do Your Parents Have a Durable Power of Attorney?

Estate planning is such an ominous term. Most of us try to avoid it as long as possible because it deals with our death and ultimate demise. I would rather we rename it “Transition Planning”. It is the planning we must do for our parents and ourselves to avoid legal delays and complications when the ownership and/or control of our assets shifts to another person or entity.

I have observed a number of situations where estate planning was not done properly. One that is still vivid in my mind involves one of my clients who was a retired physician. He was failing both physically and mentally when his wife decided to place him in a nursing home. She began making decisions regarding his finances, continuing to use their joint check book to pay the bills and make purchases, etc. Then without warning, she was contacted by the attorney of the Doctor’s first wife’s family stating that she had no authority to act in his behalf even though she was his second and current wife.

The family alleged that she was acting irresponsibly and making financial decisions that would result in the depletion of the Doctor’s assets so that nothing would be left for his  children. Unfortunately,she had no document that stated she had the right to act in his behalf. She was forced to go to Probate Court to prove that he was incompetent and become his conservator. (A conservator has the legal right to act on behalf of a mentally incompetent individual.)

She had to testify before a judge in probate court that her husband was incompetent—an event that proved very embarrassing for the whole family. The judge ruled that the Doctor could not handle his own affairs and his wife was named as his conservator. But the legal process took more than a month.

The whole mess could have been avoided if the Doctor had signed a very short three page document called a “Durable Power of Attorney” while he was still healthy. This document gives an individual the right to make financial decisions for you when you are no longer able to make decisions for yourself. A regular power of attorney only allows you to act in the person’s behalf if they are mentally competent. The “Durable” power works regardless of the individual’s mental state.

The Magic Of The Family Meeting – Part One

Transforming your relationship with your parents about money is not an easy task. With the right tools, though, you can do it. You will be able to discuss issues and topics that were previously off-limits and figure out ways to work in tandem with your parents to improve, modify, or change their financial circumstances. You will have a new sense of freedom in your communication with each other and no longer fear the forbidden topics of money and death.

But to get to this place, you will have to take a series of well-planned steps that require your patience and persistence. The first step is to plan out a Family Meeting to sit down with your parents, review their finances, and help them make plans for their future. This family meeting is an integral part of your new relationship and has a number of different pieces that need to be put in place before the meeting occurs. If these pieces are not prepared properly, the Family Meeting can become a disaster; resulting in hurt feelings, anger, and possibly the breakdown of all financial communication.

The Family Meeting should be planned well in advance to avoid any such nasty surprises. One of the most important things to do first is to identify who amongst the children is most appropriate to coordinate and lead the meeting. This is the child that parents can easily communicate with, the child that they are comfortable discussing their personal affairs with, and the child that has no fear in asking them important questions.

The second person you want to involve in the Family Meeting is one of your parents’ trusted advisors. In your own case, your most trusted advisor might be your financial planner or your accountant. But that might not be true for your parents. In their generation, they might not have had much contact with a financial planner. They may never have used an accountant to prepare their taxes. Take a look at their situation. Who did they turn to when they had a family crisis? Who have they sought out when they had financial questions? That is the person you want. It may be a family lawyer, a local bank executive, or even a minister, rabbi, or priest. The important thing is that your parents are comfortable with them and trust their advice.

The trusted advisor’s role will be to present the idea of the family meeting to your parents and convince them (if necessary) that it is a good idea and will benefit the family. He or she will also share with them a list of topics to be discussed at the meeting.

In Part Two we will discuss the Agenda of the Family Meeting.