This video is an excerpt from Elaine’s one-woman play, “So, God, what are WE going to do today?”
Madelyn is faced with a dilemma. She and Quentin have gone to the Congregational Church for over 50 years. He can no longer manage the stairs, so she is trying to pick a new church. Her first priority is handicap accessibility, but thinking about that leads to other considerations – such as baptism, communion, and what really matters to God.

A.  Your mother may be depressed.  It is also possible that she is experiencing Preparatory Grief.  I often call depression and grief “The Evil Twins of Caregiving” because the symptoms are often so similar that it can be hard to tell the difference.  If your mother is having difficulty functioning, if she doesn’t want to get out of bed, if she cannot think of anything in her life that brings her pleasure, doesn’t have anything to look forward to, and if she is experiencing suicidal thoughts, please get her to a doctor.  She may be suffering from clinical depression.  Clinical depression is a medical condition that results in a mental disorder.  If she is clinically depressed she will need medication.   However, if her condition is not that severe, she may be going through the process of Preparatory Grief.

The following is an excerpt from an article I wrote recently for Caregiver Solutions, a Canadian magazine for caregivers.  I hope this will be helpful.

Preparatory Grief

Preparatory Grief is the process we go through when we are losing a loved one due to a progressive, degenerative, and ultimate fatal disease. It is different from the grief people experience when a loved one dies suddenly, in that it requires constant adjustments to ongoing changes and losses.

My mother cared for my dad for six years following his debilitating stroke. One of the ways she coped with her grief was to disengage her emotional monitor and write letters to me in which she described everything she was experiencing and exactly how she felt about it. In one letter, written about four years after Dad’s first stroke, she said, “I think when a person has a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick. I have said many times that my husband died on October 30, 1993. We just haven’t gotten around to burying him yet.”

When she wrote this, she was grieving the loss of the man my father had been before his stroke. She was grieving the relationship they once had and would never have again. She was grieving the life she had expected to be sharing with him at that point in their marriage, and she was grieving the losses she knew were still ahead.

According to Dr. Virginia Tyler, a grief counselor with Evergreen Hospice in Albany, Oregon, it is not unusual for persons experiencing Preparatory Grief to experience both physical and emotional upset:

Common physical responses experienced by caregivers during Preparatory Grief:

• Difficulty sleeping, lack of energy, irritability
• Change in appetite: weight gain or loss
• Physical ailments such as headaches, stomachaches, intestinal problems, back and shoulder pain

During Preparatory Grief, many caregivers experience Denial, Anger, Guilt and Sadness before reaching a point of acceptance:

Denial

• Tendency to not see the loved one’s condition realistically
• Hoping that changes will not be progressive or permanent
• Reluctance to recognize decline and advance to a new level of appropriate care

Anger:

• Toward the disease and the care receiver
• With the medical community & community services
• Toward friends and family members who don’t offer help or support, and/or say or do unhelpful or hurtful things

Guilt

• For having negative thoughts and feelings toward the care receiver
• Over getting angry and/or impatient
• Wishing his or her suffering would end

Sadness:

• Feeling an overwhelming sense of loss for your former life
• Knowing that the future you had planned is no longer a possibility
• Regretting what your loved one is missing as his/her illness progresses

Acceptance comes when the caregiver is able to develop a realistic understanding and expectation of the situation. It does not always come easy. Acceptance takes time as well as a lot of mental and emotional effort. It helps to realize that:

• It is difficult to maintain balance in a constantly changing situation
• Even though you don’t want things to be the way they are, you recognize that you are powerless over certain aspects of your loved one’s condition
• It is possible to experience personal, emotional, and spiritual growth while caring for a terminally ill loved one
• Recognize that how you cope will be different than anyone else, depending on:
• Your relationship with your care receiver before the illness
• The severity and duration of the illness
• What other things are going on in your life, including your health, family, work, and friends
• How you cope with loss and change

When a loved one stops acting lovable, the caregiver’s stress increases

As a disease progresses, you may witness changes in your loved one’s personality. Nothing will make this process easy or painless, but here are five suggestions that might help you manage your feelings of frustration as you go through the caregiving experience and Preparatory Grief:

1. Separate the disease from the person. Often caregivers mistakenly think their loved one is being difficult on purpose. Pain and dementia are two factors that can dramatically alter a person’s behavior. When in pain, someone who has always been cheerful and optimistic can become demanding and sour. A stroke survivor who’s been active and self-reliant his entire life may suddenly act moody and lazy. Stroke survivors, persons with Alzheimer’s and another dementia-related diseases frequently become stubborn and combative. If you are witnessing these types of changes, talk to the doctor. Find out if the challenging behavior is typically associated with the disease. If it is, then blaming the disease rather than your loved one may save you both a lot of negative emotional energy.
2. Focus on a happy memory. Try to recapture the positive feelings you had for your care receiver when you shared a specific positive experience. Remember how you felt toward that person in that moment. And then when you are feeling exceptionally angry, upset, or sad, pull that memory out and focus on trying to replace your current negative mental energy with the positive feelings you recall from that particular event. If you didn’t have a good relationship before the illness or accident, and if you don’t have a bank of happy memories from which you can draw, then think of a time that your care receiver presented you with a difficult challenge that you handled well. Focus on the positive feelings you had about yourself in that situation and use that experience to help you deal with new challenges.
3. Meet your loved one where he or she is right now. Dorothy Tucker, a nurse who worked in nursing homes and on Alzheimer’s units for 30 years said she thought the main difference between family caregivers and professional caregivers is that professional caregivers do not grieve the loss of who their patients used to be. She said, “As a nurse on an Alzheimer’s unit, I didn’t feel sad about how the resident had changed. I never mourned who they had been 10 or 15 years earlier. I just loved them for who they were when I was with them.” Good memories are precious. Hold them in your heart, and understand that Alzheimer’s or another dementia-related disease may have permanently stolen those experiences from your loved one’s mind. Blaming the disease instead of the care receiver may make it a lot easier on both of you.
4. Join a support group. Caring for an aged, chronically ill, or disabled loved one is one of the most incredibly difficult and generous acts any of us will ever perform on behalf of another. People who have not done this work cannot possibly understand the physical demands or the emotional stress involved. Joining a caregiver support group can provide you with a safe place to express all your emotions. You will learn that having negative and angry feelings doesn’t make you a bad person. When you give yourself permission to be human, it relieves a lot of pressure.
5. Create a plan for self care. When we are in the process of losing someone we love, it creates an aching, gaping hole in our heart. The pain inflicted by this emotional wound can be as intense as any physical injury. No one else has the same relationship with your loved one as you do, and no one will ever fully be able to understand your sorrow. Your loss and your path to healing is totally unique.

Although there are no shortcuts or one-size-fits all solutions to going through Preparatory Grief, it will help if you can accept the fact that self-care is not selfish. If you will take care of your body, and pay attention to your mental, emotional and spiritual needs, you will be in a better position to help your loved one now, and eventually create a new life after caregiving.

A. Wouldn’t it be great if all couples had happy marriages and went into their “Golden Years” holding hands as they reminisced about all their happy memories? The unfortunate truth is that a lot of unhappily married young couples turn into unhappily married old couples. For whatever reason, your parents decided to stay together, and it sounds like they have a well-established pattern of being disagreeable with each other.

It also sounds like they have learned how to put you in the middle. Through their cranky and uncooperative behavior, they have trained you to do for them what they really should be doing for themselves and for each other.

I would encourage you to buy the book, Doing the Right Thing . . . Caring for Your Elderly Parents, Even if They Didn’t Take Care of You by Roberta Satow, PhD. Through sharing her own experience, as well as a series of stories about other adult children who were being run ragged by caring for demanding and difficult parents, Dr. Satow demonstrates how it is possible to set boundaries without being consumed by guilt.

The first thing you need to accept is the fact that your parents are the way they are, and you are powerless to change them. No matter what you do, you will never be able to control their attitude or their behavior. That’s the bad news.

The good news is that you do have the power to control your own attitude and behavior. You also have the ability to set boundaries and to let them know what you are willing and not willing to do for them. (This may take a lot of practice – that’s why I suggest reading the book.)

One of the hardest things about setting boundaries is reaching a point where you will be willing to risk their anger and disapproval of you. It’s one thing for them to get mad and act ugly toward each other. It’s another thing for them to withdraw their affection and approval from you.

Here are a few steps to help you get started:

1. Use “I” statements. When one parent says something mean to or about the other, you could respond by saying, “I don’t like it when you talk to him that way. I would like for you to not do that when I’m here. I love you both, and it upsets me when you talk to each other like that.”

2. Set boundaries. If they are capable of doing things to help one another, you can resign as the intermediary. You could say something like, “I understand that you would like for me to do this for you, but I really have something important things I need to take care of today.” And then let them figure it out.

3. Visualize an on/off switch in your mind. When you start feeling guilty or responsible for your parents’ bad relationship and unhappiness with each other, see yourself flipping the switch to the “off” position.

You must understand that their relationship is unique between the two of them and you are powerless to change it. You are only responsible for the relationship you have with your mother, and the relationship you have with your father – and even on those relationships you are only 50% of the equation. So do for them what is reasonable and necessary, and when you go to bed at night sleep tight.

A. Think “playful”. If you try to connect and communicate with your mother as you did before she had Alzheimer’s, your visits could become excruciatingly difficult for both of you. It is painful to realize that you cannot carry on conversations as you once did, and it can be hard to accept that the things you used to like doing together may no longer be enjoyable, or even possible. So in order to preserve your own sanity, and to make the time enjoyable for her, you might consider incorporating music, animals, children, and videos into your visiting regimen.

Music

Music is a great way to entertain a person with dementia. Have you ever watched a very small child sway and bounce to the rhythm of a upbeat song? It has the same impact on an elderly person. Nothing can lift a mood or inspire a person to move like music can.

People who have lost the ability to talk can sometimes still sing, and if they can still walk, they would probably enjoy dancing – or at least moving to the music. People generally form their musical preferences when they are in their early teens. If your mother was part of the “Greatest Generation”, she will probably have a lot of memories attached to the big band sound.

Buy an iPod or similar product that will allow you to create playlists. (You can buy a speaker small enough to carry in a purse.) And then start testing different types of music. When you play songs for her that illicit a happy, positive response, add them to the playlist. Singing and/or dancing with your mother can lift her spirit as well as yours. (Don’t worry about how you look or sound. Just focus on having a little fun together.
Sometimes silly is better!)

Animals
As we age and lose our spouses and friends, we also lose the physical connection to other human beings. Elderly people don’t get hugged or touched nearly as often as they did when they were young. Holding or petting an animal can help fill that void.

If you have a dog, and it responds well to your mom, bring it along when you visit. You might even want to consider enrolling it in a therapy animal training course. If you don’t have an animal and you don’t want one, consider doing a little research to see if there are people in your community who have therapy animals who would be willing to visit on a regular basis. Perhaps you could time your visits with the therapy animal’s visit.

Connecting with another living being can be tremendously calming and reassuring. Animals don’t judge or scold. They don’t get impatient when a person with Alzheimer’s asks the same question over and over and over again. They don’t get upset if you don’t remember their name or how they fit into your life. They simply give unqualified love. Who wouldn’t enjoy that?

Home Videos
Your mom’s short term memory may be completely gone, but if she still has long-term memories and is conversant, try recording a series of conversations on a video camera. (You can purchase a little Flip camera for less than $100, and they are easy to operate.) Make up a list of questions you can ask, such as:

• What was your mother like when you were growing up?
• What did your dad do for a living?
• Who was your best friend in elementary school?
• Did you ever do anything in school that got you in trouble with your teachers?
• Tell me about your first boyfriend?
• Do you remember your first kiss?
• What do you remember about the day Pearl Harbor was bombed?
• What was your wedding like?
• Where were you the day President Kennedy was shot?
• What was your first job?

Ask a lot of follow-up questions. The answers may or may not be accurate, so don’t get too attached to reality – just get her to talk. These recorded conversations could become a treasure to your family – or they could be nothing more than a time filler. The outcome really doesn’t matter that much. The key will be for you to engage her in a conversation in which she can talk about her life as she remembers it – in the moment that she is talking about it.

Then when you are stuck for something to talk about, play the video and let your mother watch. Even if she doesn’t recognize herself, you can have fun talking about the stories that the lady on the video is sharing.
If you have grandchildren or friends with young children, ask them to make videos of their activities and post them on YouTube. Don’t worry if your mother doesn’t recognize the kids. The important thing is to share the experience, and hopefully some laughter.

Observe Children at Play

A good friend of mine discovered recently that her mother loves watching children at play. McDonald’s restaurants with Play Places can provide lots of entertainment. My friend buys her mother an ice cream sundae, and then they settle themselves into a seat next to the Play Place so they can watch the children through the window. The kids always do something funny, which makes conversation and laughter flow easily. When she takes her mom back to her memory care facility, they both feel invigorated by the fun outing.

Coffee Table Books

Coffee table books with pretty photos can provide another source of entertainment and conversation. You can find these books at your local library, at used book stores, and often on bargain tables at new book stores. Going through the photos together can spark conversation and pass the time. Your mom may not remember a book or the
photos from one visit to another, but in order to keep it interesting for you, you might want to get a variety of books. Just make sure they have lots of brightly colored photos.

Set a Time Limit

The key for you might be to establish a time limit on how long you are going to stay. If a half hour is all you can handle, then decide to make those 30 minutes fun. Focus on the quality of the time you are with her – not the quantity. Leave your reality, resentments, worries and grudges at the front door and join your mother wherever she is at the moment. Be fully present while you’re with her, and when you leave, allow yourself to
feel good about having given her this gift of undivided attention and love

A. This is a difficult issue, and unfortunately, it is one that occurs with alarming frequency. If an adult child has a well-established pattern of going to a parent to get bailed out of one financial mess after another, it is highly unlikely that he/she will ever change. And if your mother has been unable to say no in the past, she will probably become even more vulnerable to emotional manipulation as she grows older.

So that leaves you in a difficult position. You basically have three choices. You can:

Do nothing
Establish a Trust
File for Conservatorship

Doing Nothing
Doing nothing puts your mother (and you) at serious risk. If your sibling manages to deplete all of your mother’s resources, and then something happens and she can no longer care for herself, she will most likely not be eligible for Medicaid – a government program that pays for long-term care for people who have limited assets and less than $2,000 in monthly income. There is a five-year look back policy, and if she has given her money away, she won’t qualify.

That means someone else (you or another dependable sibling or friend) will either have to care for her yourself or pay for her care out of your own resources. (Most hard-luck siblings disappear when the money is gone and the parent needs help.) Assisted living averages $3,000 a month. Care for a person in the advanced stages of Alzheimer’s can cost up to $12,000 a month.

Establish a Trust
The easiest and most cost effective solution would be to set an appointment with a good elder law attorney who will evaluate your family’s situation and help you decide what tools need be put in place to protect your mom. Depending on her situation, an attorney might make several suggestions, including establishing a trust. Everything your mother owns would go into the trust.

She would then appoint a trustee – a reliable individual who has a legal responsibility to act in her best financial interest. She and the trustee would decide how much money she needs to maintain her lifestyle, pay for medical care, etc., and she could receive a monthly income from the trust. However, if your sibling found him/herself in the position of needing several hundred or several thousand dollars, he/she would have to justify that expense to the trustee. That would take the pressure and the guilt of saying no off of your mother. A trustee can be a family member (one that has good financial judgment and your mother’s best interest at heart) or you can hire a professional. A CPA is usually a good bet.

File for Conservatorship
This is an invasive, expensive, and cumbersome legal process, but if your mother absolutely cannot say no; if she is not capable of making sound financial decisions, and if she won’t work with you to put some protections in place, then this would be a last resort solution.

It is possible for you go to court and request to be appointed as your mother’s conservator. If it is granted, you would then assume full responsibility for managing all of her financial affairs. You will have to file regular reports with the court accounting for every penny you spend on her care. The downside is her loss of privacy, the amount of work involved, and the reaction of your hard-luck sibling. You will be the bad guy, I guarantee it!

Before taking any course of action, I would strongly recommend seeing a good elder law attorney. The initial appointment is usually free. You can explain your situation briefly, find out what options might be available to you, and get an estimate of what it would cost.

Even if you have to pay for these legal services out of your own pocket, it could be a minuscule investment compared to what it will cost you emotionally, physically, and financially if your mother needs long-term care and your sibling has wiped out her assets and made her ineligible for Medicaid.

To find a good elder law attorney in your community, Google NAELA (National Association of Elder Law Attorneys) and enter your zip code.

A.The loss of relationship is one of the greatest challenges of caring for a person with Alzheimer’s or another dementia-related disease. It is excruciatingly difficult to watch as a loved one’s mind deteriorates as a result of a degenerative and progressive disease.

When someone close to us dies, we experience Grief, which is a difficult process that can eventually help us heal.

Preparatory Grief is what we experience when we are loosing someone we care about over an extended period of time. This is especially difficult, as it requires continual adjustments to ongoing changes. Simultaneously we grieve the losses we have already experienced; we grieve the loss of what we expected to have in the present, and we grieve the losses we anticipate are still ahead in the future.

Nothing will make this process easy or painless, but here are three suggestions that might help you manage your feelings of frustration:

1. Separate the disease from the person. Understand that when your mother is exhibiting challenging behaviors that it is not her; it’s the disease. Try gluing a picture of her on a piece of paper, then glue a picture of a brain over her head. This could help remind you that it’s the dementia that is causing the change in her. She is not choosing to be difficult.

2. Focus on a happy memory and the feelings you experienced with that particular event. Four years after my dad’s stroke, my mother was feeling repulsed by his appearance and many of his behaviors. One day instead of fixating on all of the things he did that irritated and upset her, she decided to spend her time recalling one particular day that conjured up especially happy memories. This is what she wrote:

“I think when a person has a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick. I have said many times that my husband died on October 30, 1993. We just haven’t gotten around to burying him yet.

Our meal was delicious. There was free champagne and a flower for each lady. As we drove around that day I had the most joyous awareness of how much I loved my husband of fifty-one years. That flower lasted three weeks. This is another experience I’ll never be able to duplicate, but I’m so glad I have the memory.”

3. Meet your mother where she is right now. This can be a challenge, but Dorothy Tucker, a dear friend of mine who worked in memory care communities for many years said that when she went to work every day she believed in all her heart that she was a nurse in a nursing home and her job was caring for persons with Alzheimer’s.

However, the residents functioned in a very different reality, and it was not unusual for her to be seen as 15 or more different people on any given day. Sometimes a resident saw her as a mama or an aunt. Some days she was a close friend from school or the neighbor from across the street. When the residents viewed her as someone they knew and liked they would get along just fine. She would “join them” wherever they were. She saw the checkered tablecloths on their picnic tables. She smelled the roses in their gardens, and she heard their babies crying in their cribs.

Occasionally residents recognized her as the bully from school or the hussy who flirted with her husband at the dance. When that happened, Dorothy learned to go away for a while until their reality shifted and she was once again someone they liked and wanted to be with.

Dorothy told me that this was one of the biggest differences between family caregivers and professional caregivers. As a nurse she could love her residents for who they were right now, instead of grieving the loss of who they had been ten or twenty years ago.

This third step can be a challenge, but if you can allow yourself to step out of your own reality and into your mother’s reality – whatever and whatever that is at any given moment, the two of you could experience some new and interesting adventures together.

A. Conversations about end-of-life choices can be very uncomfortable. None of us like to think about our own potential incapacity or death. Views on life support and tube feeding can differ vastly among family members; and just the thought of dividing money, property, and possessions can be so overwhelming, that people often choose to do nothing in hopes that it will all just somehow work out.

Hereʼs the sad news . . . When it comes to situations involving life support, tube feeding, and the distribution of worldly possessions – nothing ever just works out. The reality is that eventually most of us will need some kind of help managing our health care, our financial affairs and the eventual distribution of our worldly possessions. And we really only two choices:

1. We can make those decisions ourselves ahead of time and control what happens . . . or

2. We can choose to do nothing and relinquish our control to courts of law

As uncomfortable as it may be to initiate these conversations, the emotional and financial costs of doing nothing can be astronomical. So take a deep breath, and bearing in mind that you will need to balance your parents’ need for assistance with their need for independence, you could open with something like:

“Mom, Dad, I read an article recently about what families need to know so they can help each other in the event of an accident or illness. It made me realize that none of us kids know who you want to manage your medical care or financial affairs if something happened and you could no longer care of yourselves. As much as we would all want to do what you wanted, it’s very likely that some of us would have very different opinions about what your wishes are. I know that keeping peace in the family is important to you, so it would really help all of us if we could set a time to talk about how you would want things handled if something did happen. Would you be willing to have that conversation with us?”

If they agree to have the conversation, the next question is, “When could we do that?” If they agree to the conversation, it would be wise to suggest setting an appointment with an elder law or estate planning attorney to draw up the three things they must have in order to keep the control in their hands and out of the courts.

Three Must-Have Documents:

1. Estate planning documents (a Will and/or a Trust)
2. A Durable Power of Attorney
3. An AdvanceDirective

A trust or will states how you want your money and property distributed upon your death. A trust is similar to a will, in that it allows you to determine what happens to your property upon your death. The big difference is that property left in a trust doesnʼt have to go through probate court, which is generally a lengthy and expensive process. With a trust, you assign a trustee to pay your debts and distribute your property upon your death. A well-designed trust can help you minimize estate taxes and legal fees. A trust can be settled in weeks. A will going through probate court can take months and cost thousands of dollars.

A Durable Power of Attorney is a legal document that grants specific powers to another person to make financial decisions on your behalf. It takes effect immediately upon signing and terminates upon your death. You can grant general authority, which would give that person the right to spend your money just as you would. Your Durable Power of Attorney can pay your bills, buy and sell real estate, make gifts, access your safety deposit box, etc. Or you can limit the scope of their authority. It is up to you to determine how much control you want that person to have.

You can choose a relative, a close friend, or a professional, such as a CPA to serve as your durable power of attorney. Whoever you choose, do it carefully and make sure he/she is absolutely trustworthy, because you are in effect giving that person the “keys to your kingdom”. Be certain that this individual has good judgment when it comes to money, has no financial difficulties of his/her own, and will put your needs and best interests above all else.

An Advance Directive is a state specific legal document that allows you to give instructions about how you want your health care managed (if you cannot speak for yourself), and what your wishes are regarding tube feeding and life support. It contains two parts:

1. Appoints a health care representative (healthcare power of attorney) to make health care decisions on your behalf if you cannot do so. This person must follow your directions. If you do not state your desires, your healthcare representative must try to act in your best interest.

2. Specifies personal health care instructions and end-of-life decisions. In this document you state your wishes about whether you want to be kept alive through tube feeding and other life support measures. You can choose to let your physician decide. You can give the authority to your health care representative (usually a relative or very close friend) and let them make the decision; or if you are absolutely certain you do not want your life prolonged if you are suffering extreme pain, have no chance of recovery, or are in a permanent state of unconsciousness, you must specify that in the document. When your instructions are recorded in your Advance Directive, your physician and your healthcare representative(s) are obligated to obey your wishes.

These are the three “must have” end-of-life documents. It is possible to download them from the Internet and complete them yourself. However, the law is very complex, and when you consider the potential for error, and the seriousness of everything that is at stake, the amount of money invested in competent legal advice seems absolutely minuscule.

A competent estate planning attorney can evaluate your familyʼs specific needs and goals and design a comprehensive estate plan that may include a number of other strategic estate planning tools that will help avoid Probate, allow assets to pass to desired beneficiaries, and minimize costs and fees.

So as you enter into these conversations with your parents, understand that even though these are uncomfortable and sometimes frightening topics, the consequences of doing nothing can be devastating to families. Try to keep the focus on the benefits of thoughtful planning. Reassure your parents by emphasizing the fact that you want to respect their wishes, maintain strong family relationships, and savor happy memories.

A. The place to start is with accepting the fact that you are not and never will be powerful enough to make someone else happy. You may do things that please or displease your parents, but ultimately each person is responsible for his or her own happiness.

That said, it is important to acknowledge that there are significant physical and emotional challenges that come with aging. Bodies ache; vision and hearing capabilities diminish; physical and emotional energies flag, and thinking processes slow down. As friends and spouses pass away, one’s own incapacity and death becomes a short-term reality rather than a distant future possibility.

All of these factors can lead to feelings of depression and hopelessness. Understand that you can’t change your parents’ current reality. We don’t come with “Rewind Buttons”; so it is utterly impossible to turn back the clock to a happier, healthier time.

However, there are some communication strategies that might help you listen compassionately without feeling the need to fix everything that isn’t right in their lives.

There are three steps you can take to address specific issues while you are in the middle of listening to their gripes:

Listen to what they have to say, and then paraphrase and repeat the complaint. Don’t judge, and don’t jump to a solution or a conclusion. Just listen until they are done talking. Sometimes people aren’t expecting a solution – they just really want to be heard and understood. You can test this by paraphrasing back to them what they just said to you. This can sound like:
“So if I’m hearing you right, what you are telling me is (fill in the blank by giving them a synopsis of the complaint.)” or
“So what I think you told me is _______________.”
Respond by acknowledging their feelings. Say something like:
“That must be so frustrating for you.”
“I can see this is really upsetting you.”
“I am really sorry that this happened and that it is creating such a problem for you.”
You have two choices for the third step. You can react or you can redirect.
If you choose to react, it means you will either help them figure out how they can fix or change the situation themselves, or you will accept the responsibility of fixing it yourself. If you want to help them maintain some control of the situation, ask open-ended questions that will help them come to their own conclusion. Questions might sound like:

“What would you like to do about ______________?”
“Who might be able to help you with_________________?”
“What kind of skills would a person need to help you __________?
And if you feel like it is a genuine complaint that requires your intervention, you could say something like,
“I would really like to help. Please tell me what you would like for me to do.”

If it isn’t something that can be fixed, you can redirect the conversation to a different topic. This can be as simple as changing the subject. You can do this any number of ways:
“Oh, I just remembered . . . I got a letter from _________. Would you like me to read it to you?”
“Would you like to see what’s coming on TV tonight?”
“We haven’t talked to ___________ in a long time. Would you like to give her a call?”
“I just got a craving for ice cream. Would you some too?”
“The flowers are blooming. Would you like to go for a drive to see them?”
“It’s almost lunchtime. Would you like for me to walk with you to the dining room?”

As much as we would like to fix things for our parents, aging, incapacity and death are a part of the life cycle. We can listen compassionately. We can love unconditionally, and we can offer emotional support, but the choice of how they view their past and current life experience is ultimately their decision.

A. As we age it is normal to experience a slowing in thinking processes. We also lose some ability in the areas of short-term recall; and it is not at all unusual to forget people’s names or to misplace keys. However, if their symptoms go beyond typical age-related changes in cognition and behavior, contact the Alzheimer’s Early Detection Alliance. Their website is AEDA@alz.org and you can call them at 312-335-5712. They can provide you with dates and locations of free memory screenings in your community, and they are a tremendous resource for information and education.

The Alzheimer’s Association has published a list of 10 Warning Signs. If these behaviors sound familiar, you should talk to your parents about seeing a geriatric neurologist right away. While there is not yet a cure for Alzheimer’s, there are a number of medications that can help manage the symptoms.

ALZHEIMER’S WARNING SIGNS
1. Memory loss that disrupts daily life. A common sign is when a person forgets recently learned information, forgets important dates and events, asks for the same information over and over, and has to rely on memory aides or family members to help handle things they used to deal with on their own.

2. Challenges in planning or solving problems. Some people experience changes in their ability to develop and follow a plan or work with numbers. Following a recipe, keeping track of monthly bills, maintaining concentration can become difficult.

3. Difficulty completing familiar tasks at home, at work or at leisure. Sometimes people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.

4. Confusion with time or place. People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

5. Trouble understanding visual images and spatial relationships. Difficulty reading, judging distance and determining color or contrast can be signs of Alzheimer’s. People may not recognize themselves in the mirror and actually think that someone else is in the room.

6. New problems with words in speaking or writing. People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves. They may struggle to find the right word or call things by the wrong name (e.g., calling a “watch” and “hand-clock”).

7. Misplacing things and losing the ability to retrace steps. A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. They may accuse others of stealing.

8. Decreased or poor judgment. People with Alzheimer’s may experience changes in judgment or decision-making. They may use poor judgment when dealing with money. They may pay less attention to grooming or keeping themselves clean.

9. Withdrawal from work or social activities. A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby.

10. Changes in mood and personality. People with Alzheimer’s can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

There are more than 70 different types of dementia, and the only way to know for sure whether a person has Alzheimer’s is through the results of an autopsy. So the diagnosis isn’t as important as the behavior. You know it is time to intervene and seek help when you become aware that their safety is at risk. There are six major areas of safety you want to consider: Physical, Mental, Emotional, Social, Financial, and Legal. If you feel that they are no longer capable of managing these aspects of their lives safely, then you know it is time for you to get involved in managing their care.

A few days ago her heart stopped beating.  She was in the middle of a potentially peaceful and painless exit event, but someone on the staff noticed she was dying and called 911.  Once the EMT’s arrived, life-sustaining measures were taken. She was shocked with paddles and transported to the hospital by ambulance with sirens blaring and lights flashing.  She was  immediately put on IVs and a respirator.  Due to the quick response of the facility staff, the skill of the EMTs, and extreme medical interventions, much against her wishes, Emma survived.

Emma had an Advance Directive, and she had made it clear to her family and to the staff at the care facility that she was at peace in her soul and  she was ready to die.  Even so, panic took over and Emma’s wishes were ignored.

This is a scenario that plays out hundreds of times every day in communities across America.  Sadly, it happened with my own father.  Several years ago he suffered a debilitating stroke and was diagnosed with prostate cancer the following day. My mother cared for him at home for five-and-a-half years, during which time he had a series of smaller strokes that further compromised his ability to do the things he enjoyed.  His pain level steadily increased as the cancer spread to other parts of his body.  Then one night when he got up to go to the bathroom he became disoriented and fell into their stationary bicycle. He broke seven ribs and punctured a lung.  Despite my mother’s absolute commitment to keeping him at home, she finally had no choice. He had to go into skilled nursing care.

A few weeks later she was at his side when he started experiencing chest pains.  They were both fairly certain he was having a heart attack.  Mom asked what he wanted to do.  He said, “Don’t do anything.  I’m ready to die.”  She was holding his hand when the minister walked in.  He took one look at Dad and said, “Madelyn, you have to do something!  You can’t let this poor man lie here and suffer.  Let them call an ambulance so they can at least control the pain and keep him comfortable!”

They did give my father pain medication.  They also inserted an IV and gave him oxygen, which allowed him to live for two more miserably long, excruciatingly painful months.  Although the intentions were good, the outcome was not.

As a person of faith, I don’t always view death as a tragic event.  If we truly believe that life is eternal and that our soul lives on, why do we so frequently torture our loved ones by making them live on in a body that is worn out and riddled with pain?

Panic is incredibly powerful; and the decisions we make in the middle of a life-threatening event are not always based on reason.  Even when everyone is prepared for death and believes it will come as a welcome relief, it is easy for emotions and fear to take over.  In order to prevent unwanted treatment and stay in control of how we want to die, we must become very proactive in making our own choices, and then we have to get them in writing.  There are three documents that can help you control how your health care will be managed during the final stages of your life.  They are:

• An Advance Directive – States your wishes about tube feeding and life support
• Health Care Representative – Appoints individuals (usually one or more family members) who are obligated to follow your stated wishes and coordinate your medical care
• POLST Form (Physician Orders for Life Sustaining Treatment) – Bright pink form that should be placed on the refrigerator includes your wishes about cardiopulmonary Resuscitation (CPR);  lists your choices about medical interventions, including the use of IV fluids, intubation, advanced airway interventions, and receiving intensive care; also includes your choices about receiving antibiotics and artificially administered nutrition.

Talk to an elder law attorney and to your physician about getting these documents completed.  Talk to your minister and to your family about how you want them to respond in a moment of crisis.  Make sure all caretakers know your wishes. (Doing this when you are healthy is the ideal time to get started, as there is a lot less emotion attached to a “what if” scenario.)

If someone you love is living in a long-term care facility, have a conversation with the administrator and ask about their policy regarding emergencies.

I recently spoke at Prestige Care in Visalia, California and was impressed with their system for handling emergencies.  They have 911 Emergency packets for each resident that contain the person’s end-of-life orders.  The staff is instructed to pull that file when they dial 911. They give a copy of the Advance Directive and POLST Form to the EMts as they walk through the door.  They give another copy to the EMTs as they are leaving with instructions to hand it to the staff at the hospital upon arrival.  They also call the hospital when the patient is in route to let them know he/she will be arriving with these documents.

It is never easy to face our own mortality or to talk with loved ones about how they want things handled in the event of their incapacity or death.  However, making these decisions ahead of time is actually one of the most generous things we will ever do for our children.

There are two excellent books that can help you prepare.  My Mother, Your Mother by Dennis McCullough M.D. explains the concept of slow medicine.  A Gerontologist, Dr. McCullough offers insights into the physiology  of the aging body, and he outlines a compassionate way of caring for elders and helping them maintain their dignity as their bodies decline.

A Better Way of Dying by Jeanne Fitzpatrick M.D. and Eileen M. Fizpatrick, J.D. helps people prepare for a compassionate death.  The two women are sisters.  One is a physician, the other is an attorney, and their combined knowledge about  medicine and the law is a tremendous resource for teaching people how to control end-of-life care.

It is often said that “Life is a Journey”.   It is so true.  God gave us free will; and we understand that gift allows us to make a thousand choices every day about the food we eat, the work we do, the people we love, and how we spend our time and money. It also gives us the ability to choose how our health care will be managed at the end of our journey.

Having the discussions and getting all of the documents in order takes some effort, but it is one of the most generous things we will ever do for our loved ones.  At the end of my own life I hope my family will be with me and that they will be comforted knowing that they have followed my wishes and have allowed me to die peacefully and with dignity.  I hope they will know that I love them, and as the physical part of my life ends, I hope they will believe, as I do, that my soul has just begun another exciting journey.