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Frequently Asked Questions About Caregiving (FAQs)

Find the answers you are looking for by locating the stage you are in.

Planning Stages of Care

It is never too early to start planning.  When we see a loved one starting to slow down or perhaps becomes increasingly forgetful, it is a good reminder that we need to put a plan in place.  Do this BEFORE someone becomes ill.  

Yesterday!  Whether it is for you, your parents, spouse or loved one, you should initiate the discussion and know what their wishes are so that in the event something happens, you don’t have the added stress of knowing how they want to be cared for or how to pay their bills.  Communication is the key.  If you are uncomfortable with talking with your loved one about these sensitive topics, then start by talking about your own wishes.  This oftentimes helps open up the topic for others to chime in about their wishes.

We recommend that you should at the very least have the following documents signed and filed in the event you may need them. You may want to consult an elder law attorney to create a full plan.  Many of these forms you can find online for little to no cost.  Refer to our resource list for recommendations.

  1. Power of Attorney
  2. Health Care Proxy
  3. DNR
  4. Living Will
  5. Last Will and Testament

In order to create a care plan for you or your loved one, you need to start the conversation and find out how they want to be cared for in the event that they can no longer care for themselves.  It is a sensitive discussion that not everyone can handle.  You need to find the right person to initiate the discussion.  If you feel overwhelmed by the prospects, contact a local community health worker or social worker who can help you sort out what you will and will not need. 

Some simple first steps you can do is to record the following and store it somewhere safe.  It can be an app (like 1password.com) or on your computer.  But place it where you put other sensitive and important documents.

(1)   list of medications and dosages

(2)   all user names and passwords for banking, financial, and other accounts that are paid or accessed online

(3)   list of all bills that are paid monthly

(4)   List of banking, stocks, other financial account information

(5)   List of all credit card information (including user/passwords)

Advance directives are a set of documents that state how you would like to be treated medically in the event that you are unable to communicate your wishes directly.  They typically included a health care proxy, living will, DNR (Do Not Resuscitate), POLST (Physician’s Order for Life-Sustaining Treatment).  Advance directives are legally valid throughout the United States. While you do not need a lawyer to fill out an advance directive, your advance directive becomes legally valid as soon as you sign them in front of the required witnesses. The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state’s law.   Also, advance directives can have different titles in different states so be sure to look up the requirements for your state.

In the event you ever become incapacitated and unable to make decisions on your own regarding financial or other matters, a power of attorney states the person you would like to make those decisions on your behalf.  There are 4 main types of power of attorney forms: Limited (for limited purposes), General (comprehensive), Durable (remains in effect after you become incapacitated), Springing (only goes into effect after you become incapacitated). If you do not have assigned a power of attorney and you become incapacitated, you will have to deal with the messy legal process of either having a conservatorship assigned to you or having a family member prove that they your best interests in mind.  You do not want that to happen if you know and trust someone to be your power of attorney so make sure to get that document signed!

In a nutshell, estate planning plans for the ‘when I die’ scenario while elder law plans for ‘what happens if I develop an illness and need managed care.’  You need and should have plans for both scenarios, especially since most people are living longer and are likely to develop a chronic illness during their lifetime.  It is important to have an elder law plan in place so that you don’t go completely bankrupt because you become ill and cannot pay your medical bills.

They are very different.  A last will and testament states how you would like your assets to be distributed after your death.  A living will is a document that states your end of life wishes in the event you become incapacitated and unable to communicate those decisions yourself. A living will does not affect your assets or property.  It just affects your medical care.

Mid Stages of Care

Your loved one needs an increasing amount of help. It may be time to bring in outside assistance. Know what your options are. There are many new and alternative resources for care. Self-care is critical to ensure you don’t suffer from burnout.

Palliative Care is the treatment and management of serious illnesses at the time of diagnosis in order to provide a highest quality of life for the patient.  They usually work in teams of a doctor, nurse, social worker and clergy to support the patient medically and spiritually.  Incorporating a Palliative Care team can drastically improve your loved one’s quality of life.

There is often confusion between palliative care and hospice but they are two different disciplines.  While palliative care can treat a patient from the time of diagnosis and is on-going throughout the term of the illness, hospice generally focuses on general comfort of the patient when death is imminent. 

Burnout can cause not only complete physical and mental exhaustion but can also manifest in physical illness for the caregiver.   It is critical for caregivers to know that self-care is just as important as caregiving.  Set up a team early on.  You cannot nor should not be expected to do this on your own.  Reserve time every day for yourself to do what fulfills you.  Be sure to do some sort of physical activity a few times a week – it can be a walk, jog, dance, whatever.   Caregiving can be a marathon so you need to train yourself to know your limitations and that it is okay to ask for help. 

 

Self care is critical for every caregiver.  It is usually the last thing to be addressed because caregivers are so overwhelmed with the daily tasks of caring for their loved ones.  Not providing self-care is the equivalent to smoking 8 cigarettes a day!   Look for respite care.  There are organizations who help with hiring respite care.  Ask a family member, friend, relative or neighbor to help for a few hours.  Take a walk; a yoga class, meditate.  Whatever it is, make sure you carve out time in your day for YOU so that you can focus on your own health.  As your flight attendant always reminds you, you must put on your mask first before helping others.

This can be difficult and overwhelming in the moment. Many of us have been there (I know I have).  Take a moment to breathe before you react to their behavior.  First, it is good to take notice of any potential triggers that might create the behavior.  Oftentimes it is out of frustration, pain, memory issues.  It can also be the onset of a form of dementia.  Never take it personally and never react with aggressive behavior as it is likely to just escalate.  Better to walk away if you need.  Listen. Ask them how they are feeling, or maybe they just need some space to figure it out themselves.  Divert their attention to something that gives them pleasure (a joke they like or a place they like to go).  It takes a lot of patience but it does help to let go and not take it personally and that it is usually the disease talking.

Lack of medication adherence is one of the biggest reasons why people end up in the hospital – from missing doses to overdosing. There are a bunch of different apps on the market that can help with medication reminders.  A pill organizer is helpful if you take multiple pills more than once a day.  You can set several alarms at different times of day on your smartphone as a reminder.  There are also several medicine management devices but seems that nothing has yet to be developed that is totally full proof.

Definitely write down (in your phone or on your computer) all the medications and dosages s/he takes plus any allergies to medication. This document is VERY IMPORTANT in the event you need to go to the hospital.  Oftentimes, this is the first document they will ask you to fill out. 

Early Stages of Care

You notice that your loved one definitely needs more help. If you don’t have the basic documents in place like advance directives and a POA, do that first. Create a care team and talk with them about how you will delegate the tasks involved with their care.

They are very different.  A last will and testament states how you would like your assets to be distributed after your death.  A living will is a document that states your end of life wishes in the event you become incapacitated and unable to communicate those decisions yourself. A living will does not affect your assets or property.  It just affects your medical care.

In a nutshell, estate planning plans for the ‘when I die’ scenario while elder law plans for ‘what happens if I develop an illness and need managed care.’  You need and should have plans for both scenarios, especially since most people are living longer and are likely to develop a chronic illness during their lifetime.  It is important to have an elder law plan in place so that you don’t go completely bankrupt because you become ill and cannot pay your medical bills.

Advance directives are a set of documents that state how you would like to be treated medically in the event that you are unable to communicate your wishes directly.  They typically included a health care proxy, living will, DNR (Do Not Resuscitate), POLST (Physician’s Order for Life-Sustaining Treatment).  Advance directives are legally valid throughout the United States. While you do not need a lawyer to fill out an advance directive, your advance directive becomes legally valid as soon as you sign them in front of the required witnesses. The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state’s law.   Also, advance directives can have different titles in different states so be sure to look up the requirements for your state.

In the event you ever become incapacitated and unable to make decisions on your own regarding financial or other matters, a power of attorney states the person you would like to make those decisions on your behalf.  There are 4 main types of power of attorney forms: Limited (for limited purposes), General (comprehensive), Durable (remains in effect after you become incapacitated), Springing (only goes into effect after you become incapacitated). If you do not have assigned a power of attorney and you become incapacitated, you will have to deal with the messy legal process of either having a conservatorship assigned to you or having a family member prove that they your best interests in mind.  You do not want that to happen if you know and trust someone to be your power of attorney so make sure to get that document signed!

There are a number of changes in behavior that are red flags.  You will probably notice them gradually.  Knowing when it is time to bring in help is the key.  If you notice any of the following changes in physical or cognitive behavior, it is a sign that your elder may need additional care.

  • Missing or forgetting important appointments, dates
  • Consistent use of poor judgment (e.g. falling for scams or sales pitches, giving away money)
  • Forgetfulness, uncertainty or confusion
  • Sudden or extreme weight loss or gain
  • Loss of interest in hobbies and activities
  • Sudden changes in mood or extreme mood swings; ‘they don’t seem like themselves’
  • Physical difficulty moving around, getting up, walking, balance, general mobility
  • Unexplained bruising or injuries
  • Decline in personal hygiene (body odor, smell of urine on clothes)
  • Unable to perform normal household responsibilities (pay bills, proper food shopping, laundry)

It starts with a conversation.  Getting resistance is normal.  No one wants to lose their independence.  When you start asking Mom about her bills that haven’t been paid, offer to help to take the stress off.   She will see that she can’t do it by herself anymore.  Bring it up from time to time, ideally when she is not frustrated though because she is likely to be more resistant to change.  If she continues to be resistant, then tell her that you need the help. 

First if there are other family members involved, then have a family meeting.  Discuss who will take on the role of the primary caregiver (it is usually fairly obvious).  That person should NOT take on all the tasks.  Be sure to delegate.   Create a calendar with weekly or daily tasks and delegate.  Some tasks include:  meal prep, toileting, exercise, driving to appointments, managing meds, paying bills. Securing your loved one’s safety is of the utmost importance while trying to maintain a sense of well-being and quality of life. 

Covering long term healthcare costs can skyrocket pretty quickly depending on your medical needs. In 2015, a senior who turned 65 could incur an average of $138,000 in long term medical care costs. Some ways you can pay for these costs include

  • Long term healthcare insurance (an increasingly expensive way to pay for long term costs)
  • Open a healthcare savings account
  • If you are a veteran, check your veteran’s benefits
  • Personal savings account
  • Medicaid. This way to pay for long term care has been growing and for many middle class families the only sustainable way to pay for long term medical care.  It usually requires the assistance of an elder law attorney to help make you eligible and apply as the process can be complicated. Medicaid laws vary state to state.

Late Stages of Care

We are filled with complicated emotions at the end of life. Finding peace for you and your loved one when they are near death can be a healing and extraordinary experience.

Hospice takes place when death is imminent and is the decision of the patient or health care proxy usually with the guidance of a physician.  Hospice is designed to care for the physical, emotional and spiritual needs of the patient at the last stage of life.   One can have hospice services at their home, nursing home, hospital, or hospice center. 

Hospice care usually starts when a referral is submitted.  A hospice representative visits the patient within 48 hours of the referral being made and must be approved by the physician.  They then assess the immediate quality of life needs of the patient.

Hospice is a full Medicare benefit, by Medicaid in most states, as well as most private health insurance policies.  Families should check with their health insurance provider to ensure coverage

Although end of life can differ from person to person, there are some signs that you can look out for that may signal that death is imminent.   Some of the signs include

  • Extremities (hands, feet) are cool to the touch
  • An increased amount of sleeping
  • They may lost control of their bowel / urinary functions
  • Less eating. They will no longer have an appetite to eat
  • Changes in breathing pattern
  • Gurgling or congestion may occur
  • Restlessness due to decreased amount of oxygen

It is important to understand that there is no one way to grieve.  Each person’s grieving process is specific to them as an individual and their relationship with the person who has died.  It is also important that grieving does not have a start and end date.  Give yourself and others the space to grieve when you/they feel the time is appropriate.  Respecting others and their grieving process is critical.

There are many options for funerals nowadays but first thing you must do is report the death to the appropriate authorities in order to receive a death certificate (you will need the death certificate to close many of their accounts and settle their estate).  If you are at a hospital, nursing home, or hospice, the staff will be able to assist you with this.

Once the type of funeral (see below) is decided and whether the body is to be buried or cremated, then contact the appropriate funeral director for arrangements.  They will walk you through the entire process.

There are many different ways one can celebrate and honor the life of a deceased loved one.   The decision to bury or cremate is usually decided with the guidance of the deceased prior to their death or according to religious practices.  Aside from traditional funerals, there are religious funeral services, green burials, cremations, memorials, ash scattering ceremonies, home funerals. 

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