You’re In Charge

WrightsWe all feel invincible.  Nothing bad happens to me… I’m going to live my life being relatively healthy.  Then one day I’m going to go to sleep and that will be the end of my life.  That is a lovely fairy tale.  Very few people have that privilege.  Yet we don’t plan ahead for our end of life care.

Most family caregiving situations occur in an emergency.  There you are.  You were fine yesterday.  But today you need to go to the hospital, and life will never be the same.

Whether you’re currently retired, organizing your retirement future or concerned for your aging parents’ plans, some important issues can be difficult and emotional to consider. What if you planned ahead?  This article is meant to increase your knowledge and lessen your stress about things you’ll need to know for the future.

The Initial Conversation

Most families do not want to have a conversation about end of life care.  It is uncomfortable.  Yet planning ahead gives the best scenario for everyone.  The person needing the care will know that he or she has a planned support group and will either be cared for at home or at a facility of choice.  Family members will feel secure that the best plans will be followed and that no one family member will be put in a stressful situation either emotionally or financially. This planning begins with the initial conversation.

Who is the best person to start the conversation; is it you?  It is so important to explore rather than come up with a plan that you and other family members have decided upon.  You may start:

What do you think about?

What do you worry about?

What do you hope for when you look at your future?

 Getting more specific, you might ask, “Where would you like to live the rest of your life?  Have you thought about what you want to do if you need more help?  As time goes by it may be difficult to stay in this house.  You do have other options.  Let’s talk about what they might be.

Some people may not want to explore this topic.  If your loved one is shutting down conversation or getting upset, say, “I understand all this is really hard to talk about.  It’s upsetting to me, also.  But it is important for us to discuss.  Some important tips include:

  •  Ensure that everyone’s feelings are respected and viewpoints are heard.
  • Don’t have preconceived ideas about how your loved ones might feel or what they will say.  Listen more than talk.  Tell them that every person has to make these same decisions.  They are not alone.
  • Be straightforward about facts.
  • Phrase your concerns as questions.
  • Make sure everyone is heard, especially those who might be afraid to give their opinions.
  • End the conversation on a positive note.
  • Finally, plan something fun and relaxing afterward.

 Other Topics for Future Conversation With the Family

The next time the conversation is broached everyone has time to think about future plans.  You might want to include other major family members.  These conversations will become individualized to suit your family and your loved one’s situation.  However, there are some common things you’ll want to include:

  •  Living Wills
  • Power of Attorney – medical & financial
  • Medications
  • Insurance policies
  • Where important information should be stored
  • When is it time to give up driving?
  • Major & Minor roles of family caregiving
  • What to do if family lives a distance away?

Form Your Support Caregiving Team

Before you talk about the next steps, you need to form your team.  Barring mental or physical incapacity, or other extraordinary circumstances, the person receiving care should play the most significant role in the discussion.  The care recipient’s wishes and priorities are the cornerstone of every family caregiving plan.

When the family plays the major role in caregiving, life is most enjoyable when every adult takes a form of responsibility.  Some may be good caregivers, others may be able to give financially, and some may be great at doing research.  Every adult family member can certainly have a designated role and most members can relieve the main family caregivers for a weekend quarterly no matter where they live.  It is important that each prime caregiver gets plenty of breaks so that he/she feels refreshed and so no one person gets overly stressed or burnt out.

Home Caregiving Plans

I have found that the preferred plan by most families is receiving care at home.  Few people choose to go to a facility.  When asked our most elderly folk would not want to burden their children by putting them in a caregiving role.  However, when an emergency occurs and life becomes more difficult to live independently, the first people called are the adult children for love, caring and help

Each family can work out the best plan.  There are several different options.

  1.  One option is caring for your loved one at your loved one’s home.  When my mother needed care, both my father and I lived at our family home.  While someone was always available to care for Mom, Dad and I could each take breaks; go out with friends, go shopping, or have some fun and relaxation.  Mom was well cared for and neither my Dad nor I got overly stressed.  Other family members came to visit when they could.  It was a very enjoyable experience.
  2.  A second option is rotating homes for care.  For instance if there are four adult children living in different locations, the care recipient visits each home quarterly.  This way the care recipient gets to spend quality time with each adult child and his/her family.
  3.  A third option is to have the adult children rotate their caregiving responsibility at the care recipient’s home.  The care recipient stays in one place and the adult children and their families rotate.

In each of these scenarios a notebook may be kept on a daily basis so that each person caregiving is instantly updated. Also professional help may be called in when and if needed to give the caregivers relief and respite.

There are situations when it is advisable that the family does not take the lead in caring for the loved one.  For instance, if  the family relationships are strained, no one can easily take on the active family caregiver role.  Each situation and circumstance is very different.  What is best for one may be unavailable or toxic for another.  Still when plans are discussed, there are no surprises when an emergency health situation arises and your loved one needs care.  Your loved one is cared for on the highest level and with the best option.

There is no limit to your imagination and ability to make a plan that works best for your family

Outside Help and Consultants

You do not need to be alone caregiving for your loved one.  There are several types of Community Resources.  You will want to speak to your loved one’s doctors, retirement planners and their lawyer to gain professional information about their health, and to conserve their finances.  Neighbors and friends may have important information to add concerning your loved one’s present mental and physical state.  They may also give information about home cleaners and property maintenance.

There are several support groups for you and your loved one.  There are caregiver support groups as well as support groups for most major illnesses.  Finally there are professional home caregivers who can give you information on care and help when and if needed.

On the state and federal level there is information on housing resources, transportation resources, Medicare and Medicaid information and Financial Resources.

I did not plan my family caregiving experiences with my parents or my best friend.  I just took on the responsibilities as they happened.  Some situations worked well, other situations were a disaster.  I am not invincible, neither are you or your loved ones.  End of life is part of life.  It can be stressful or it can be very pleasant for all concerned.  Planning ahead is gift you can give yourself and/or your family.  The end can be a disaster or a celebration.  Plan ahead and make it a celebration!