How to Live When Someone You Love is Dying

My life stood still just a couple of weeks ago.  My mom's Alzheimer's disease dramatically advanced over night.  She was no longer able to walk, she was confused and unable to feed herself.  Trips to the emergency room and one hospital admission did not give my family any hope.  We were told the advanced stages of my mom's dementia, her age and over all condition, made her a poor surgery candidate.  Her options were limited: a nursing home or hospice, we elected hospice.  

The first days of hospice were surreal.  I could not believe in my heart my mom was dying.  My mind understood, and I knew the steps and formula well.  As a chaplain, I have been here with families hundreds of times, yet it was difficult to be there with my own family.  My mom could not be dying.  She is the matriarch of my family and the foundation that holds us all together.  Even though she lost her ability to boss us around, intrude in our lives and cook the best food in the state of Michigan she was still feisty and able to love us.

I dropped everything waiting for my mom to die.  Then something happened!  She started to smile.  She ate a couple of bites of food, and in a confused language of her own, she began to talk.  These moments are less than a fraction of what she was capable of before, but it was hope.  She is still unable to walk and feed herself, but life still seems to linger in her attitude.  She seems to have found a new home in her hospital bed.  Her new hobbies are sleeping and twisting the sheets.  I do not even know if she knows me, but she is very kind.  She says thank you when you change her and remains a lady.  She is modest because that southern bell ingrained in her DNA refuses to leave her naked.

These new signs of life have given me hope to continue with my own.  This is the first post I have written outside of the "Working on Monday" series.  I can not be responsible for the death of any one's dream, so I continued and will continue to write the "Working on Monday" series.

My mom's strength has given me courage to share and live again.  I can breath knowing that she remains.  I do not know how long she will be on earth with us.  I miss her beyond comprehension when I think of her death.  I do know, I must live while she is dying.  I am thankful that my mom knows how to love me, even when she does not know her own name.  Nothing is stronger than a mother's love.

Here are some ways to live, while someone you love is dying:

1. Try to see the winner in you, that they did.  People who love you see beyond your current conditions.  They encourage you to do more and speak of your talents and potential.  Think about all of the potential they saw in you and honor their ability to see the good in you.  Live up to their expectations and fulfill your dreams.  The people who love you sacrifice many things to help you succeed, let the things they passed by for you not be in vain.
2. Understand that death is a part of life.  We all have an appointed time on the earth.  Some of us are give 6 days, 6 months, 6 years, 36 years, 60 years, 86 years or 106 years.  The time is determined and inherent in our created being.  
3. It is okay to cry.  Tears are an expression of your soul.  Let the cleansing nature of your tears sooth your being.  Tears are normal, acceptable and heal in ways we do not understand.  
4. Forgive yourself.  You are not responsible for the death of your loved one.  We do not know how death will come.  It can come in the form of a tragedy, old age or a disease.  You may have said some unkind words or done even worse to your loved one who is dying.  We all say and do things, never expecting death to be the next event that brings you together.  If you knew things would have gone differently, but you did not know and now it does not matter.  Time forgets the mistakes of yesterday and so should you.
5. Function in the change.  When a loved one is sick and dying, life changes.  You may become a caregiver, you may have to do things that take time away from other activities, you may have to drop everything.  Manage the moment in front of you, to the best of your ability.  Cry through it, yell through it, crawl through it, be afraid through it or be courageous, but try not to avoid.  You can do what is necessary, even in your weakness.  
6. Say goodbye.  The ability to say goodbye is not always guaranteed.  If you have the ability to say goodbye, cherish it and take the time to say what is in your heart.  Saying goodbye is not going to make death come sooner.  Death comes in spite of your actions.  It works on a schedule beyond your control.  You can even say goodbye after your loved one has died.  It is the burden of your soul that needs to be expressed. 
7. Simply live. Death, dying and grieving are all a part of life.  They are uncomfortable times that cause a great deal of pain, but a real dimension of our existence.  Death and dying does not mean you have to punish yourself because you are still alive.  Live and laugh.  Sometimes you may wish you were the one dying or life seems unbearable without the ones you love,  though you will forever be changed it does not have to mean eternal devastation.  Eventually the confusion of death aligns itself with the the normalcy of life.  I am acknowledging the breath of life within you.  Please give yourself permission to live, it is okay.  One step and one moment at a time.

Accepting death is a part of Empowered Peace...
photo credit: Chaplain Donna

Growing Old in a Culture of Busy People and Broken Families, Part 3

"I'm sorry, we have done everything possible.  Your _____ is now on life support, what do you want us to do if your _____ goes into cardiac arrest?"

These are the dreaded words millions of people hear in hospitals across the world.  The families and loved ones of many elderly people are not prepared for this day.  Families sometimes believe death will just happen and are not aware that decisions need to be made when their loved ones are in between Critical illness and death.  A misunderstanding of what life support means, mixed emotions and not knowing what a loved wants causes patients to linger on hospital units unnecessarily.  Part 3, the last section of my series, Growing Old in a Culture of Busy People and Broken Families will discuss Advance Directives and the legal implications for elderly care. 

Advance directives, also known as living wills, durable or medical power of attorney and DNR (do not resuscitate) are documents that express to your physicians, family and friends your wishes regarding health care.  For example, an 80 year old woman, living at an assisted living facility comes into the emergency room because she is having difficulty breathing.  The woman has an advance directive on file and the assisted living facility  forwards this document to the hospital.  En-route to the hospital the woman needs additional help breathing, and the ambulance crew intubates her (breathing through a tube).  Upon arrival at the ER the doctors and nurses stabilize her with additional medications to help her blood pressure.  After working on the patient the doctors discover the patient did not want to be resuscitated and approach the family. 

This scenario happens more often than you think.  I'm not a doctor or nurse and I can not explain the technical and medical causes or reasons for the body's behavior.  I can not even give you medical advice or guidance.  I'm a chaplain and I am speaking with the voices of families I support almost daily.  They do not have a complete understanding of life support and struggle with the decisions involved in a DNR.  Educating yourself on the different forms of life support available and what they do is important.  Being informed helps you make better decisions for your elderly loved ones.  The first thing I want you to know, you are not killing your loved one by removing life support.  Their bodies are already sick and beyond the point of recovery.  Life support merely sustains a dying body, life support does not repair or heal.  The next thing I want you to know is when doctors are approaching you and ask "what do you want us to do (in regards to life support)?"  They have already done everything to 'cure' the patient, they want to know to what degree do you want us to keep the body living.  You have to remember living does not mean your loved one is going to return to their former activities and life.  The expectation usually is your loved one will spend the rest of their life in bed and/or on a breathing machine.  Their quality of life is gone and your loved one is no longer 'your loved one' they are a body laying in the bed.  The last thing I want you to know before we move forward is people die on life support.  Removing life support gives comfort during the last season of your loved one's life.

Talking with your loved one before they are unable to make their own medical choices is invaluable.  In part 2 of this series I discussed having difficult conversations, please review for further information.  A good place to start with these conversations is quality of life.  Ask your loved one how they define quality of life.  Knowing how they feel about physical independence, the level of mental capacity that is acceptable to them and how aggressive they want their treatment to be reduces stress if you are confronted with these decisions.  Respecting your loved one's wishes allows them to have dignity when they are vulnerable.  Putting your own desire aside and respecting the wishes of your loved one, is the most selfless and loving action a family member can do. 

FORMS OF LIFE SUPPORT

Life support is used to support failing or failed organ systems because they can not function alone.  The human systems that are helped with life support and some of the support forms used are:

1. 
   
   Respiratory System- usually supported with a ventilator
2. 
   
   Cardiovascular System- usually supported with medications
3. 
   
   Renal System- usually supported with dialysis
4. 
   
   Gastrointestinal System- usually supported with tube feedings

• 
  
  Here is a great article that gives easy to understand explanations

If your loved one does not have an advanced directive the physicians will consult with the family.  The spouse normally becomes the decision maker.  If the person is single or widowed the children are usually the next people to make the medical decisions.  There is normally one sibling designated for this task and a social worker is usually involved in establishing the decision maker.  A person can be appointed a surrogate decision maker through the courts if the family doesn't agree or the patient does not have any family or friends. 

Sometimes families decide not to remove support, then their loved ones must be transferred out of the hospital. They are normally placed in long-term care facilities, which specialize in caring for patients on life support.  Please be aware of your loved ones healthcare insurance.  They can be transferred out of state, you should be aware of their long-term care benefits.  

CONCLUSION

To get further information on advanced directives you can contact an attorney.  They will be able to answer your questions and give you additional information according to your state or country.  I would also recommend families to sit down with their loved ones and doctor to discuss different forms of life support. 

This concludes my series, I hope you enjoyed it and learned empowering information to give you spiritual well-being and peace.

ADDITIONAL RESOURCES

Medicare.gov (This link will help you discover your loved ones Medicare benefits)

My 5 Wishes, Aging with Dignity (This is a great tool for discussing and planning end-of-life medical care)

The Merck Manuals Online Medical Manuals (Everything you want to know about healthcare is here)

Nolo Long-Term Care Kit (Planning long-term care with guidance)

Growing Old in a Culture of Busy People and Broken Families, Part 2

Here is a brief review of part 1:

1. I introduced you the the topic of aging, through sharing parts my of family's story. 
2. I gave you some substantial statistics about the aging population in the United States.
3. I listed some important aspects of preparing for the aging of your loved ones.

In part 2 of this series I will share more of my personal story and equip you with information for having difficult conversations with your family. 

The body naturally ages due to the limited life of cells.  As the cells in a body approach the end their lives, the organ systems fail and the body dies. There are several reasons why the life of a cell begins to fail, but the process is inevitable (Merck 2005).  The physical limitations in the elderly are not always due to cell deterioration.  Senior citizens become dependent for several reasons, the health problems caused by aging, psycho-social problems, spiritual disconnections and financial concerns. 

Aging began to affect my family in very subtle ways.  My lack of understanding caused me to ignore, under estimate and misinterpret my parent's behavior.  For example, when my parents went to places and got lost.  My mom was unable to answer simple questions about the year and president.  Their diet dramatically changed, my dad began to wear the same clothes for several days, my mom was unable to keep up with her beautiful garden, the house was messy, especially the bathrooms, they stopped using their cell phones and simple self care was not maintained.  My parents stopped watching their favorite TV shows and began watching uncharacteristic programs. These things happened very gradually and went almost unnoticed.  My parents would always have a cleaver answer or a funny wise crack to appease the questions raised by their behavior.  My parent's masquerade finally ended when my dad was admitted to the hospital.  The truth about their inability to live alone was a painful reality.  I was filled with guilt because I didn't see what was right in front of my eyes.  I felt as though I let my parents down and I didn't help them when they needed me most.  Drastic changes needed to be made and my parents were not happy about any of them. 

Maybe some of the things I have mentioned in my story are resonating with you.  I want to encourage you, all things are possible with God.  Caregivers are put in the emotionally devastating position of taking over another person's life.  The stress of family disagreements can add to the unpleasant nature of elderly care.  And the other responsibilities of home, work, children, bills, marriage, school and life in general do not disappear. 

The needs of each aging person are different but these are normally the main areas of concern.  These subjects are sensitive to your elderly loved ones and many times to family members who do not agree with your assessment.

1. Driving:  taking away the car keys of your loved one.
2. Nutrition: making sure your loved one is eating a healthy diet.
3. Doctors Appointments: making sure your loved ones are getting to their appointments and following the doctor's recommendations.
4. Preventing Falls: getting your loved one to use canes, walkers, etc. to keep them safe.
5. Activities of Daily Living: making sure your loved one is wearing clean clothing, getting to the bathroom, bathing, taking their medications and attending to their other daily needs.
6. Living Arrangements: carefully considering all of your options and choosing what is best for your loved one.  (9 Things to Consider when Picking an Assisted Living or Nursing Home Facility)
7. Paying Bills: making sure your loved one's bills are paid on time and getting proper access to speak to creditors. 
8. Social and Spiritual Care: making sure your loved one is properly engaged with life.

• Tip: as busy as you may be, try to make daily visits to your loved one. This will allow you to see if your concerns are relevant. Monitor how much they can really manage on their own and compare notes with another family member if at all possible.

• Tip: get the help of a healthcare professional when you assess your loved one's ability to function independently.

Preparing for Difficult Conversations

Preparing to confront your elderly loved ones about necessary changes can be intimidating.  If you have already tried this without success don't throw in the towel, try another approach.  It is important to first meet with the family members that will be involved with decisions and care.  Getting everyone to agree about what needs to happen and when forms a united front.  You have to remember your aging family members will probably not cooperate with you.  They may feel you are trying to control them and not trust you to step into their lives.  Be PATIENT!  Remember this is a traumatic event for seniors.  They have worked their entire lives for what they have and letting it go is not easy.  Put yourself in their place.  How would you react to a person telling you to move, asking for access to your bank accounts and telling you when to eat, shower and what to wear.  You might be more than a little irritated. 

If your loved ones continue to refuse additional help or resist needed changes, you may have to be strong and do it anyway.  Ask yourself, "Is letting my loved one have their own way more important than them getting hurt?"  Accidents are a real possibility and can further compromise poor health.

Steps to Effective Communication

first understand the desired outcome you wish to achieve as a result of the conversation. Clearly STATE the path by (Hochberg 2007):
S: Sharing your facts
T: Telling your story
A: Asking for others’ paths and outcomes
T: Talking tentatively
E: Encouraging testing of various outcomes and language.

Emotional thinking is not the best choice for this level of decision making. Try to make an agreement to place family disagreements aside. Remember every family struggles with aging loved ones. With patience, persistence and prayer you can not only manage this but learn to integrate this natural event into your life.  Stay tuned for the last part of this series which will cover the important legal aspects of aging. 

• Tip: Although your loved ones are losing Independence, allow them to help as much as possible.

REFERENCES

Differences in Morbidity and Mortality. Author(s): Anne Case and Christina Paxson, Source: Demography, Vol. 42, No. 2 (May, 2005), pp. 189-214, Published by: Population Association of America. stable URL: http://www.jstor.org/stable/4147343, Accessed: 14/08/2010 08:47.

Hochberg, K. (2007). Having Difficult Conversations Is Crucial. ONS Connect, 22(6), 26. Retrieved from Academic Search Complete database.

Preventing Falls for the Elderly

The Merck Manual of Health & Aging

USA Today- Older, Dangerous Drivers a Growing Problem
U.S. News and World Report Health

Growing Old in a Culture of Busy People and Broken Families, Part 1

I'm a thirty-nine year old, divorced, single mom with two elderly parents.  My mother gave birth to me when she was forty-two years old and my dad was forty-three.  I was about twelve years old when I realized my parents were 'old.'  This was the beginning many fearful years for me, I believed my parents would die soon.  I always imagined they would die before I was done with school and I would be left alone.  My concerns were foolish and self-centered because I never considered the effects of aging.  I simply thought my parents would continue to live their lives: gardening, eating at restaurants, sitting on the porch, cooking, shopping, self-care and just die one day.  My non-existent views of aging were quickly adjusted when my dad became ill and my mother wasn't able to care for him or herself.  I decided right then my parents would never have to worry, I moved into their home, quit my job and became their caregiver.  This worked for about a year then the realities of our society dictated alternative solutions for my family.  My parents made too much money to receive state benefits, but not enough to support me and daughter.  State benefits would have allowed them to hire me as their caregiver.  I was forced to go back to work, but taking care of three dependent people, my two parents and a teenage daughter, was overwhelming.  I Begrudgingly moved my parents to an independent/assisted living facility to meet their needs. 

I moved back to my home, began to re-focus on my daughter and pursuing my life's calling.  I thought everything would be fine because my parents had everything they needed.  This was another ignorant thought process, my parents continued to age and their needs continued to increase.  I had to adjust their levels of care at their new home and somehow convince them that they needed the extra help.  It has taken me years to understand the fullness of what growing old really means.   

The experience of watching my parents age has been emotional, but I've learned many valuable lessons.  The goal of this series is to let you know that you are not alone.  The number of adults over 65 is expected to be 19% of the United States population by 2030.  This has major implications for busy, broken and economically stretched families.  Caregiving, healthcare costs, living arrangements and end-of-life decision making will become their responsibility.  Educating yourself for the aging of your loved ones will help you prepare for thier increasing needs.  It will also help you maintain a sense of spiritual well-being during the most difficult times of this natural process. 

REFERENCE

Koenig M.D., Harold G., Douglas M. Lawson, Ph.D. and Malcolm McConnell.   Faith in the Future, Healthcare, Aging, and The Role of Religion; Radnor, Pennsylvania: Templeton Foundation Press, 2004. 

RESOURCES

United States Administration on Aging

Senior Medicare Patrol Programs

A Place for Mom, National Senior Referral Service for Housing

Alzheimer's Association

Senior Citizens Resources, Official from the U.S. Government