That Thing We Don’t Talk About

Have you ever heard the phrase, “The 200-pound gorilla in the room”? It’s a phrase that refers to a topic that nobody talks about, but it so dominates everybody’s thoughts. Everyone knows the gorilla is there, but nobody gets anxious because, after all, you don’t want to upset the gorilla.

There is a 200-pound gorilla in the room at any time being spent with a senior. It is a topic that is blatantly pertinent to any senior, but it is a topic that nobody talks about either because it’s too upsetting, or nobody knows how to talk about it. But it is a topic that weighs on the mind of every senior, and your mom and dad virtually every day. The 200-pound gorilla in the room is death and the end-of-life issues that are ahead for every senior citizen at some point or another.

As the caregiver for your mom or dad, you should be aware of how heavily the topic we don’t talk about weighs on the minds of your parents. If you have lost one parent, the surviving spouse is even more aware of the issue. But there are good reasons to remove the stigma from talking about end-of-life issues with your elderly parent. That is because there are numerous ends of life issues about which you must reach some decisions before that time actually comes along including:

·       The condition of the Will.

·       Do not Resuscitate and other advance directive document decisions to give to end of life medical personnel.

·       A review of insurance and the location of other financial documents that you, the executor of the Will or the person who has power of attorney will resolve.

·       Any desires the senior citizen might have about funeral arrangements.

In order to be able to discuss the end of life and issues related to death, you will have to be at a point emotionally where you can deal with the topic yourself. Many of us bury our thoughts of death in a mental trick we play that seems like we think we will not have to go through this part of life. We do that perhaps because we prefer to think about life or because we are uncomfortable about the discussion of the afterlife and religious ideas.

So, to get ready to be able to be a good caregiver and counsellor to your aging mom or dad, you should sit down and get some peace and resolution about the topic yourself. If that means confronting your religious anxieties, well, that is part of adulthood and those who are depending on you including your aging parents and your children may be looking to you for some answers in that area. It will take some courage but face those issues so you can be ready to help your parents face them too.

If you have a religious faith and your parents share that outlook, this is the time to review the afterlife assurances that come from your religious upbringing. By spending time with your mom or dad reviewing the doctrines of heaven and the comfort those religious texts bring, you can give them renewed hope and peace about the coming of death because they will know that passing from this life is not the end.

Don’t let the 200-pound gorilla stay in the room. Confront the issue of death with your aging parent or parents and do so with compassion and kindness. If you do, you will help your parent reach a place of peace and acceptance about what is going to happen that will benefit them for the whole of their golden years remaining on this earth.

Ways to simplify your finances

Many people prefer to keep their financial information on paper only. If you choose this option, you won’t need a computer, internet access or passwords, but your records may be less accessible. For example, if you are travelling, you won’t be able to view them online. There can also be difficulties if you forget the combination to a safe or lose your safe deposit box key.

Paper copies kept at home can also be lost to theft, fire, or water damage, so be sure to use a fireproof, water-resistant home safe.

Set aside a little time to review and update your information every three to six months, or whenever something changes.

Now that your financial details are all in one secure place, you may want to take some additional steps that will make it easy for your financial advocate to handle your money when the time comes. Here are some suggestions:

Use direct deposit for all income, such as paychecks, investment income, pensions, and Social Security payments. The money will be deposited automatically into the account you choose.

Set up automatic payment (“autopay”) for routine bills, such as your mortgage, utilities, credit cards, and subscription services. Payments will be deducted directly from the account you choose. You’ll need to set this up with the individual banks or service providers, such as your utilities company or the subscription service.

Close unnecessary accounts. Having too many credit cards or other types of accounts can make it difficult for your financial advocate to keep track of your money and they could miss payments or incidents of theft, fraud, or abuse.

Use a password manager. Using one saves all of your different passwords for every website or account so that you don’t have to write them down or remember them every time you need to log in. All you need to remember is the master password for the password manager.

Make sure the accounts you rely on during retirement are protected against fraud and abuse.

Fiinancial Inventory

 Thinking of having someone act for you with a Power of Attorney now or in the future? If so before you act, you should complete your financial inventory or save it in a file along with your inventory, here is some of the information you will need:

•         Checking, savings, and credit card accounts including your online accounts and passwords

•         Regular monthly bills for the mortgage, rent, utilities, insurance, and subscription services (for example, newspapers, TV, internet, cell phone, and data storage)

•         Other bills for property taxes, homeowners insurance, car insurance

•         Income tax returns

•         Insurance policies (life, health, home, car, long term care, and other property)

•         Investment and retirement accounts such as Individual Retirement Accounts

•         Other sources of retirement income such as Social Security, pensions, and annuities

•         Debts such as your mortgage, home equity or personal loans, credit cards, and any medical debt

•         Safe deposit boxes or in-home safes

•         Valuable personal belongings such as cars, jewelry, art, antiques

•         Real estate deeds, including rental properties or vacation homes and titles to all vehicles

•         Address, email and phone numbers for professionals who handle your money, such as an accountant, financial advisor, or attorney, and other service providers and close contacts

•         Your last will and testament and any pre-paid funeral arrangements

•         Any trust documents you have in place

Where should you store all this private information?

Save or store your financial inventory and other important documents in a secure place. If you keep an electronic copy, make it a password-protected document. If you print out your inventory, store it in a locked file cabinet, home safe, or a safe deposit box.

More people choose to store their financial information online using tools like Google Drive, Dropbox, OneDrive, or iCloud. This method is often called cloud storage. Saving your information in the cloud makes it accessible anytime, anywhere as long as you have a laptop, tablet or smartphone with internet access. Most online cloud providers use security features, such as passwords or two-step verification, to keep your documents secure. Spend time to learn how these important features work.

 

Personal Planning in a Pandemic

We are in the middle of a Pandemic and we don’t know when we will see a new “normal” or what that will even look like. Seniors (those of us over the age of 60) are at higher risk of complications and death due to this new disease. We are also at risk every time the flu season comes. The irony appears to be that as we age, we are in more danger of dying 😊 not from old age, but from infectious and chronic diseases.

The pandemic or the flu can strike anyone at any time. I think you need to ensure that if you are diagnosed with COVID-19 or some other fatal disease that your values are Expressed, Documented, and Respected. This can be done by preparation, planning and talking about your plans.

To start the process, here are some ideas.

First ask yourself:

What brings my life meaning and joy?

      If you don’t know, who can assist with clarifying facts and values (e.g., spiritual advisor, social worker, family physician)?

Have you considered your values and wishes and chosen someone who you trust to make decisions on your behalf, in your best interest, of benefit to you and who will speak for you and your values while protecting your autonomy, dignity and worth?

Do you have any beliefs and values that will impact on your care, such as receiving a blood transfusion?

Do you want lifesaving care or comfort care?

Do you want drastic measures to save your life and under what circumstances?

What are your wishes and do you have any specific instructions?

Have I recorded my wishes?

Have I shared my wishes with those who are close to me and my health care provider(s)? After you have clarified your thoughts and wishes, I suggest you write them down. Once you have done that then you need to have a number of conversations with family, friends and those named to represent and follow your wishes.

What do I understand about my current health? If I don’t understand, who can I ask that I trust to explain it to me? If I know and accept my situation is it time to have my Representative or Substitute Decision Maker take over the running of my affairs so that I can concentrate on my situation.

In BC we have the ability to choose someone to represent us and become a Substitute Decision Maker. This person must have the knowledge, experience, and available time to do the job properly. Once we have chosen this person we need to plan ahead and discuss our wishes regarding the quality of life and end of life care.

By taking the above steps you will know that your wishes will be followed and that you are easing the burden of those you love.

What are your end-of-life wishes?

April 16-22 is a week for inspiring seniors and others to start the conversation about end of life planning. This year the theme of National Healthcare Decision Week was "It always seems too early until it’s too late”. In Canada, our day for this is National Advance Care Planning Day in Canada (April 16). This year's goal was to inspire a proactive approach to planning ahead for your end-of-life wishes. Contemplating the end of your life, and outlining the kind of health and personal care you wish to receive if you were unable to speak for yourself, is not always easy, but it’s important.

Remember, it’s not just about you, it’s about ensuring that your family and friends have a clear plan to support your intentions. Advance care planning is a process of reflection and communication, and it may involve writing down your wishes and talking with healthcare providers and financial and legal advisors. If you do not have an advance care plan in place, perhaps it’s time to start the conversation?

In our COSCO Health and Wellness workshop, on this topic, we point out that if something happens to you, decisions are going to be made.  You can make them yourself or appoint somebody else to do so, but come what decisions will be made. Sometimes your mental competency may come into question because of any number of situations: stroke, dementia, brain injury from an accident.  If your mental competency is challenged and we know this happens and you haven’t made your own legal arrangements you are vulnerable to adult guardianship (which means others will make decisions about you).

Somethings to think about as you consider this topic. Personal planning lets you stay in control. The burden on your spouse, family and friends is eased. Personal planning keeps the state/government and other authorities out of your private and personal affairs.Personal planning is for all adults, those who need help today because their mental competency is in question and those who want to plan for the future

We hold faith

For we that live, when we lose someone to death, death becomes a storehouse of discontinued dreams, of unanswered questions, of unfulfilled dreams and desires, of unanswered problems of regrets and remorse, self-hate, self-love or unjustified guilt and shame.

When someone dies, their life becomes an unfinished biography, a book with a plot that hangs in the air, an ever silenced half-finished dream. Death hides bundles of lies never admitted, of sins never confessed, of love or hate turned inside out. The death of a friend or loved one, reduces everything to nothing, leaves us with suspended memories that can heal the soul, break the heart, distort the truth or justify the intentions of the survivor's imagination.

Why does death mean so much and life mean so little? Why is death a million miles away and just around the corner? How can death be unwanted, unanticipated for some, welcomed as long lost friend, a conquering hero for others? Why is death both the question and the answer, the problem and the solution?  Death can be the beginning of the end or the end of the beginning.

We do not talk of death, it is a subject like religion and politics to be avoided. Why? How can ministers preach so convincingly about death when they have never experienced it themselves? Why must they rely on the words of a long dead God whose writings fill thousands of pages and are subject to as many interpretations?

Who can be more knowledgeable about death than those who have been there and have experienced it at first hand? But those who have experienced it cannot return to share their experiences and their expertise with the living. We hold faith that there is an afterlife, and we have religion and other fakes, fraudsters, and mystics who show us the way. Yet they depend on dead spirits and ancient text, and images floating in the afterlife of the hereafter to convince us?

To ease the pain and loss of loved ones when they die, we invented gods, religions, all the gospels and all the angels including the horned, long tail devil. When we listen to those who preach of life hereafter, or of reincarnation or in other forms of life after death we suspend our critical thinking. Why do we not ask who invented heaven and hell or why it was invented?

When I die please do not cry, or be sad, walk away and celebrate my life by being the best you can be.

Today is National Advance Care Planning Day in Canada

Our government has just brought in new laws about the right to die, which in its attempt to be all things to all people, of course means all sides of the issue are upset. End of life is a contentious issue in Canada.

Two new studies have shown that Canadians are not prepared for the end of life. A national study of elderly, ill Canadians and their caregivers, as well as the results of a national Ipsos-Reid poll indicate that most Canadians have not talked to their family or their doctors about their preferences for care should they be unable to speak for themselves.

That’s why over 25 associations across Canada have joined together to champion April 16th as a day for Canadians to speak with family members and friends about their wishes for end-of-life care.

Advance Care Planning is a process of reflection and communication about personal care preferences in the event that you become incapable of consenting to or refusing treatment or other care. The most important aspects of advance care planning are choosing one or more Substitute Decision Makers – someone who will speak on your behalf and make decisions for you when you are not able to do so yourself and having a conversation with them about your wishes.

Research results released today from the ACCEPT study, a multi-year national study of elderly, sick patients and their caregivers indicate that more discussions are needed both between family members and with doctors.

One would think that the patients in our study, most with about six months to live, would be more engaged in advance care planning. But only about 20% had been informed by their doctors about their prognosis, and 44% weren’t actually sure what the goals were for their current treatment, says Dr. Daren Heyland, the Principal Investigator of the study.

A number of study participants, despite their condition, had not created an advance care plan as they felt that the discussion was not relevant to them, even though the majority of them had an opinion about life-sustaining treatment when asked, and a large number (46%) indicated dissatisfaction with their lack of knowledge of comfort measures treatments that do not cure but keep patients comfortable at the end of life.

A March 2012 Ipsos-Reid national poll found that 86% of Canadians have not heard of advance care planning, and than less than half have had a discussion with a family member or friend about healthcare treatments if they were ill and unable to communicate.

Only 9% had ever spoken to a healthcare provider about their wishes for care. Another study is currently underway across Canada to examine advance care planning from the perspective of health care providers.

The Speak Up: start the conversation about end of life awareness campaign has several valuable resources to help Canadians communicate their wishes, including a website (www.advancecareplanning.ca ) with workbooks, wallet cards and links to provincial / territorial legislation and planning information. There are also tips and videos to help people begin these often difficult conversations.

As health care technologies and life saving interventions continue to improve and people live longer many with complex medical conditions advance care planning becomes increasingly important, says Dr. Heyland. We need to communicate our values and wishes around the use of certain procedures at the end of life, and what we believe gives our life meaning.

Here are some resources to help

The Canadian Hospice Palliative Care Association

Advanced Care Planning Resource Page for each Province in Canada or Territory

End-of-Life Law and Policy in Canada 

End of life Care Medical Association of Canada 

A Guide to End-of-Life Care for Seniors (CARP)

The Canadian Researchers at the End of Life NetworkEnd-of-Life Care in Canada (pdf file)

The Government of Canada Palliative and end-of-life care 

What is an Advance Directive?

As part of your Advanced Care Planning you may decide to put in place an Advance Direction. An Advance Directive is a written instructions made by a capable adult directly to the adult’s health care provider to give or refuse consent for health care:

• It is a legal document dated, signed and witnessed.
• It is used when the adult is not capable of giving instructions at the time the health care is required.

This distinction between a Representation Agreement , a Power of Attorney, an Advance Care Plan, and an Advance Directive is absolutely essential information.  For more information about these documents, check with your legal team to find out the laws about each in your area. Briefly, the distinction is as follows:

• Representation Agreement is a legal document that names the person or persons who will speak for you if you are incapable of speaking for yourself.
• Advance Care Plan (May be oral or written (preferable). It is not a legal document in my Province (it may be legal in yours--check with your legal team).  It sets out the wishes of an individual with regard to the kind of care and treatments he or she wants to have.  It can include end-of-life care.
• Advance Directive (AD) is a written legal document that is to be given to health care providers to guide them in providing care when the patient is unable to speak for him or herself.  
• Power of Attorney – This document does not deal with health care.  It deals with financial and legal matters.

When AD May Not be Followed 

• When a Personal Guardian (Committee of the Person) appointed by the Supreme Court disagrees.
• When the AD does not deal with the health care decision at issue.
• When it is unclear what the adult wanted.
• When it is in conflict with the patient`s known wishes, values or beliefs.
• When changes in medical knowledge, practice or technology might substantially benefit the patient, unless it states that it applies regardless

Remember that only when the patient cannot speak for him or herself will the Advance Directive be used. As a result, the document must be very carefully worded. 

Example:  The Advance Directive (AD) states that the patient does not want to be attached to machines. What exactly does that mean?  Some ‘machines’ such as an IV drip are quite routine and others are very sophisticated.

The medical team will do their best to follow your AD, however they can only follow it if it is clearly written.  That is why specific language must be very carefully considered. For example saying “I do not want to be resuscitated if my representative is satisfied that my illness is terminal and I am expected to die within the next six months.” is not a directive. It is a statement that expresses a preference but not a specific instruction.  It would require interpretation and judgement and cannot stand alone.

However, putting the following in writing: “I refuse consent for blood transfusions in any and all circumstances.“ would be considered a directive because this statement expresses clearly what treatment is involved and describes the specific circumstances when it applies.

Consent is required for all types of health care with two exceptions:

• Preliminary examination, treatment or diagnosis if the patient has indicated that he or she wants the health care; and
• Urgent or emergency health care that is necessary to preserve life, prevent serious physical or mental harm or to alleviate severe pain.
• When the patient is stabilized then the rules of consent apply.

The above is very important because it clearly lays out that treatment will be given should the patient enter a health care facility.  Just by going to the emergency department shows that a patient wants health care.  Note that the rules of consent (the AD document) will apply AFTER the patient is stabilized.

Remember:  Decisions are going to be made by somebody. This is why a Representation Agreement is strongly advised. Perhaps the patient does not want his or her spouse to be put in the position of making life or death decisions, or the patient has several children and has definite ideas about who should represent him or her.  Without a Representation Agreement, the medical personnel will use whichever child they can reach first.

Source: The information from the last two posts on Advanced Care Planning and Advance Directives come from various sources including MyVoice Booklet and COSCO Health and Wellness Workshop on Advanced Care Planning

Advance Care Planning for Seniors

There is no such thing as a living will in BC. It is a concept imported from the United States. There may be the ability to have a living will in your jurisdiction, so before assuming that you can do this check with a legal expert. However, where I live in British Columbia we have legislation that allows individuals to express their wishes, usually in writing, regarding the care they want to receive or reject.  What I am encouraging is that people have a conversation with their families or friends to discuss what should be done if, and only if, they are unable to speak for themselves

Advance care planning (ACP) begins with an in-depth discussion about your values, wishes, and beliefs. Pay particular attention to the topics that should be included in the discussion of your values, your wishes and your beliefs. The subject should be revisited from time to time because people’s views can change depending on a variety of circumstances:  health concerns, new medical procedures, new relationships. Think of your advance care planning as an organic process, as you grow your wishes, thoughts change.

Remember in most areas and in all of Canada a written Advance Care Plan is not a legal document but it is a powerful document because decision makers will have guidelines to follow should they be placed in a position of speaking for another person who is incapable of speaking for him or herself. The plan is acted upon when, and only when, you are incapable of making your own decisions.

The assumption the law takes is that most capable adults want to make their own decisions about their medical care. Under the law a health care provider must presume an adult is capable of making a decision until it is demonstrated that the person is not capable.

Sometimes it is not easy to prove that a person is incapable of making his or her own decisions. For example if a person is unconscious it is easier to determine incapability than if they are slow to speak or difficult to understand, perhaps because of a stroke or the effects of medication. However, if you cannot speak for yourself then somebody else will have to make decisions about your medical and end-of-life care

These are the tests that help medical caregivers to determine whether the individual who must be 19 years of age or older can make his or her own decisions. The first assumption must be that the adult is capable, which means that he or she demonstrates the following:

• Understands the information being given about his or her health condition;
• Understands the nature of the proposed health care, including the risks, benefits and alternatives; and
• Understands that the information applies to his or her own situation.

If you are accompanying such an individual, perhaps in an emergency department, then you may need to intervene if you think the medical caregiver is rushing this procedure.  This is a crucial moment in the care process.

The real impact of advance care planning and the components that drive the subsequent care is that Decisions are going to be made, and that you can make them. or you can decide who will make them if you cannot. The most important idea is that: COME WHAT MAY, DECISIONS ARE GOING TO BE MADE.

That is why it is very important to have a Representation Agreement and you need to be sure that the representative (s) named know what your wishes are.  The Advanced Care Plan (ACP) is not the same as a Representation Agreement. A Representation Agreement indicates who you want to speak for you when you are not capable of speaking for yourself.  It is a legal document that sets out the kinds of decisions the representative may make.

An ACP provides information about the care you want to receive.  It works hand in hand with a Representation Agreement

The importance of having the right person involved requires legal documentation or in BC the Temporary Substitute Decision Makers list will be used. Who is on the Temporary Substitute Decision Makers list in BC (this may be different in your area: Spouse: married or cohabiting; may be same sex, Child (no specific order if more than one), Parent (so specific order), Sibling (no specific order if more than one), Grandparent (no specific order), Grandchild (no specific order), Anyone else related by birth or adoption, Close friend, and finally In-law (no specific order)

Decisions will be made, and if you cannot make them one of the above will, but you can give this power to someone you trust to look after your best interests. So when you start this search, here are some questions to consider

• WHO do you approach to start the conversation?
• HOW would you start?
• WHAT are your values, wishes and beliefs?
• WHERE will the plan be kept?

These suggestions about how to start the conversation may apply to the person expressing his or her own values, wishes and beliefs or by a concerned family member or friend who might be placed in a position of making the decisions. 

This can be a very tricky part of the process because very unpleasant occurrences are being contemplated, otherwise the patient would be making his or her own decisions. Deep emotions may surface and the parties involved need to structure the discussion carefully with regards to site, attendance, calling a recess, compilation of the written record, etc.