I Thought She had Nothing to Teach Me?

She sat in a green velvet chair, white hair in a bun, quietly reading, and saying very little of any depth. She called me her duckling, which was sweet, but we never had a conversation. When she went to church, her only venture out of the house, her husband drove. She did not drive or own a car. I do know she wanted to travel back to her homeland, Ireland, but was afraid to fly and never traveled. This was my Paternal Grandmother, Mary.

At first glance, we may think an old woman like this has little to teach us. However we may want to look and listen a little deeper. Grandma Mary was most importantly my motivation to take risks, go on adventures and have courage in every fear I face. I did not want to end up living with regret as I assumed she did. Whatever I am afraid of? Do it anyway!

However, she was once young, pretty, independent and smart. She was in the first graduating class of Lesley  College in Cambridge. She was a teacher whose family had all died leaving her property. She owned buildings that she rented out. She had a vocation, career, and substance. Back then however, once you married you turned all your money, property and independence over to a man. She gave it all up for love.

Mary also suffered from anxiety. Which no one talked about. She was surrounded by men, a husband and four sons and one daughter. Her mother and sister had died young. She had no support of other adult women. No counseling and no medication. Women had hard and few choices shaping their lives that we do not fathom today. So I learned that before we judge someone’s worth in our lives, we need to hear the whole story. It turns out I learned a lot from Grandma Mary!


How Can A Care Manager Help?

People sometimes ask me, “Could you just come over and help us make a plan for our future?” I love to hear this, because it means that they are thinking ahead about challenges and transitions that may come up as they age. When I worked as a Medical Social Worker in a hospital, I often saw elderly patients admitted because they didn’t have the support they needed at home. To add to their crisis, they also had no plan in place when they were sent home from the hospital. A Care Manager can help prevent these scenarios.

Most Care Managers have a background in Social Work or Nursing with experience working with senior citizens in a healthcare or other community setting. A Care Manager will have an initial meeting with a client and their family at home to help them think about what they would like their life to look like as they age. They may talk about their hopes and worries and their family may share their concerns as well.  This allows for solutions to be in place before a need even arises.

Most often I hear this comment “We have enough money now, but what if we live so long that we run out? How will we pay for care?” A Care Manager can explain Medicare and Mainecare coverage, the process of applying, and financial qualifications. A surprising number of people have not completed an Advance Directive for healthcare. Often they haven’t done so because they are understandably afraid to complete an important document without guidance from a professional. Sometimes situations are unique or complicated and other experts need to be involved. A referral or contact info is often given for a service such as an Elder Law Attorney, Visiting Nurse Service, Lifeline, help with showering, meal delivery or even a dog walker. Another familiar comment I hear is, “My mom (or dad) just doesn’t seem like herself, she isn’t motivated and she is forgetting appointments.” In this case a Care Manager might suggest a Geriatric Evaluation.

Older people often live alone with in home support, and their children may live out of state. A Care Manager can be depended on to manage their day to day care and keep their children updated about changes. If a client decides they no longer can manage to live at home alone, a Care Manager is very familiar with area Assisted Living and Nursing Care settings. They can explain what each one offers, pricing, and help them decide which would be right for them. If a loved one has memory loss, families are often under a lot of stress. A Care Manager can be a great supportive resource and connect them with support group and community aid. If any of these issues sound at all familiar a Care Manager can help.

Memory Loss Assistance

This is a helpful note written to a woman’s friend who is suffering with short term memory loss. Although she does not have Alzheimer’s type dementia, she does need memory loss assistance. Because I work in Senior Care with many people who suffer with short term memory loss, this caught my attention. Could this clever idea, first seen in the movie Fifty First Dates, provide comfort to  people who have other types of memory loss? Please see the Mail Online article here.

An Important Conversation

Last Thursday evening I gathered with members of my community at the Kennebunk Town Hall for an important conversation with Ellen Goodman, a former Globe columnist, Pulitzer Prize winner, and founder of The Conversation Project. She spoke to a packed audience full of health care professionals, senior citizens and their families. The Conversation Project is a national campaign to help people talk about their wishes for the end of their lives, including end of life care.

As Ellen spoke about her experience with her own mother, I realized how easy my mother made our lives, even in her death. We did have “The Conversation,” and we had it many times. For as long as I can remember our mother was telling us what her wishes were for after she died. Mom grew up on the coast of Maine and loved the ocean. She wanted to be cremated and have her ashes “brought to sea by a lobster man on a real working lobster boat”. She wanted all of her most precious possessions to be returned to whichever child the gift had come from. All other items were to be donated or sold and divided up between the four of us. She had a small life insurance policy to cover the cost of her funeral. When she went into the hospital with a brain tumor, she called for a Social Worker and with all of us at her bedside appointed my oldest sister her Durable Power of Attorney, but was again very clear that we all knew what her wishes were. She made it through brain surgery just fine. When she died suddenly two years later at the young age of 68, we were all grief stricken, but what eased our burden was knowing just what to do. We were able to grieve without any regret, guilt, or uncertainty. We carried out her wishes just as she wanted, a final gift she gave us and we gave her. We were able to say goodbye with closure.

Although my mother died suddenly, so often this is not the case. Our medical technology has become so advanced, that a long, good life can be extended and sometimes prolonged far beyond long and good. Too often in my work as a Medical Social Worker I listened to families in despair at trying to decide what their parent would want because they could no longer speak for themselves. I watched siblings who could have been supporting each other, often confused, and angry with each other.

 The Conversation Project hopes to spark cultural “change at the kitchen table-not in the intensive care unit”(1). By going to their website www.theconversationproject.org you can learn more about the conversations including information on appointing a Health Care Proxy/Durable Power of Attorney for Healthcare which is a representative to speak for you, and completing a Living Will which explains what medical care you want at the end of your life, should you not be able to speak for yourself. The Conversation Kit, which you can download, gives facts and questions to ask ourselves and our loved ones, tips on how to start the conversation and what topics might come up or that you might want to bring up. During Ellen’s presentation we also watched a clip from ABC News with Diane Sawyer of a real conversation between a family of multiple generations. This and other peoples’ stories and wishes can be seen at http://abcnews.go.com/Health/Conversation/.

 The first conversation might feel uncomfortable, but once started it may become the first of many. It gets easier and often ends up bringing families closer together. When end of life discussions are had, and decisions are made, people often feel a sense of relief about the future, which leaves us free to live our lives fully in the present.

Ethical Wills

I never knew my Great Grandmother, Martine. She died before I was born. I know she was French Canadian and came to Goose Rocks Beach, Maine every summer to run her own hotel. She was a business woman and she worked very hard. I know she was a great cook, and all her guests and her family loved her. She lived a long life to 91. I know what everyone else thought of her. She made an impression on them all, but did not leave her own impressions behind.

Ethical Wills were often written by women for their children long ago, because although they could not have a legal will, they did have something else of value to pass down. An ethical will is a written record of our important thoughts that we pass down to our families. It can include cherished memories, family stories, values, beliefs, knowledge, lessons learned, regrets from the past and hopes for the future. Maybe there were mistakes to warn about, but also risks that were worth taking. And it doesn’t need to be hidden away until after we are gone, an ethical will can be shared with our loved ones now. Some people choose to write an ethical will in their later years, but also during times of change such as when children or grandchildren are born, or on an anniversary of importance. For some it is a way to reflect on where they have been and where they want to go.

Many people keep a journal, and this is a great way to gather material and store memories. Others feel more comfortable making a recording or filming a video will. Some might begin by explaining why they are writing, and then relate what has been most important to them throughout their life. This is a place where one can share their memories, perhaps even retelling a time in history from their point of view. It can include historical and ancestral information. Some have used their ethical will, in part, to ask for forgiveness, or to grant pardon, to make requests or convey dreams for their families future. Provoking guilt or scorn however, would obviously not be an “ethical” will. For more examples and information on ethical wills please read Barry K. Baines book, Ethical Wills Putting your values on paper.

If I could ask Martine, I would ask her this: What time do you wake up in the morning and when do you go to bed? Where do you get your energy and your strength? Do you like what you do? Who is your favorite guest and why? Are you in love with your husband? Is working and raising children at the same time a privilege or a burden to you? Do you like to read? What do you read? Are you happy? What do you think the meaning of your life is or life in general? What are your regrets? Were you scared in the fire of 47? What about the war? Where did you get your recipes and how do you make baked peaches? Many aspects of our lives that we think are boring, might be of great interest one day to a curious great grandchild that we will never meet.

Place the Oxygen Mask on Yourself First-Care for the Caregiver

One of the most prevalent issues I see in my work is how someone’s memory loss and confusion affect the loved one who is caring for them. In some rare cases family members all pitch in to help and support one another, but that is not the reality for most family caregivers. More often than not, the bulk of care giving falls to the adult child who lives the closest, or who volunteers first.

Sometimes family members stay away, not because they don’t care, but because it is just too hard for them to see that their parent has changed. Elie Wiesel compares the sufferer of Alzheimer’s disease to a book in which each day a page is torn out until all that remains are the covers of the book. After working with many people with memory loss and their families, it does seem that the family members share as big a loss as the victim of the disease. Like their loved one, they too are in limbo. The person they love is here, but part of them is already gone. It is too late, yet too soon to say goodbye. For the family member who is their primary caregiver, there is no greater gift they could give them and they live with few regrets long after their gone, except for one, which is that in the process of caring for them, they may have forgotten to take care of themselves. It is often true that the support we give the ones we love, far surpasses any support we give to ourselves.

Many of us have heard the analogy of the flight attendant on a plane explaining the oxygen mask procedure. Should we lose cabin pressure, the oxygen masks will drop down. If you are traveling with a small child, please place the oxygen mask on yourself first, otherwise you could lose consciousness while trying to help your child and then neither of you will be able to breath. And this is true for caregivers. If we spend all of our time and energy on our loved one, and none on us, we become exhausted, burned out, and sometimes even sick to the point that we are no longer able to care for anyone.

So how do we take care of ourselves when we are overwhelmed with all we have on our plates?

  • Seek practical support and ask for help. Maybe your brother or sister can’t spend a lot of time with their parent who doesn’t really seem to know them anymore, but maybe they would be willing to help you. Perhaps they don’t even know where to start because you seem so capable. So be specific. You could request that they go grocery shopping and give them a list, cook a meal, walk the dog, mow the lawn, make home repairs, pick up your kids after school, or pay for things that are needed. If there is no one else or they cannot help, you may want to consider hiring a caregiver.

  • Seek emotional support. Challenges almost always seem less daunting when shared with a friend who is willing to listen, especially if that friend is someone who can imagine walking in your shoes. By joining a support group you can spend time with people who understand your situation, and may have been living with it longer and can offer some great advice. (please visit alz.org for support group information) People tell me that before they came to a group they felt like they were the only ones going through this and then realized they were not alone at all. Many of the participants got even more out of it by supporting the other members. Sometimes one of the members would tell a funny story that only the participants of the group would get, and the seriousness of the subject would release into long needed laughter. One man told of the bright side of having to move into an Assisted Living together when his wife’s dementia worsened. It seems she had been hiding money all around the house for years. She hadn’t told anyone and forgot that she had done it. When they moved out, he and his children found over $10,000 hidden in the house.

  • Support yourself. Take care of yourself and take time for the things you love to do. Spend time with friends and family, see a funny movie, exercise, sleep, eat healthy, read, spend time with pets, see your doctor if you are feeling run down and don’t skip health appointments. If you take care of yourself first, you will be able to take care of the people you love.