Having Hard Conversations: Part II

By Mary L. Flett, Ph.D. December 10, 2017

Last week we discussed the medical/legal side of dying the way you want to (Part I).  Today we’ll look at getting buy-in from the people who will carry out your wishes.  There are three broad areas that need to be addressed:

• Finding and hiring caregivers willing to care for you at home
• Buy-in from primary care, spouse, children, partners, friends
• Written instructions for your wishes

Now, how do you have the hard conversation about all of this?  The University of California, San Francisco and the VA have developed a wonderful online tool to walk you through the questions that are essential in having this hard conversation.  Known as PREPARE FOR YOUR CARE, this self-paced program will help you identify who, what, where, when, and how you want to be cared for.  Do follow the link and work your way through this very thorough process.

Decision-making Qualities

Working with qualities instead of duties or tasks usually ends up with a good fit.  It is a more challenging conversation and will take awhile, but it definitely worth the effort. What are the qualities you want in someone who will make decisions for you?  Below is a partial list – see which ones you think are important.

Think about why these qualities appeal to you and how you think they would insure that you get the care you want/need.  Feel free to add or remove qualities.  This is about YOU!

Who Wants to Talk about This?

Many of us are not very skilled at talking about death, dying, and perhaps your loved ones don’t want to have the conversation at all!  Avoidance of this topic is understandable.  And yet it is such an important conversation to have.  So you can expect to be uncomfortable and awkward!  And you can still talk about this!

In my experience, many people are afraid of hurting someone’s feelings.  This just doesn’t make sense!  I have heard too many stories where one sibling is angry at another because s/he didn’t do what Mom or Dad wanted.  Or where a spouse (especially if it is a second marriage) has different ideas about what is needed from the kids.  Or even in situations where there are no close relatives and a distant cousin is called on to make decisions without really knowing the person they are now responsible for.  This is not the time to be doing family therapy!

Who Will Make the Decision?

Once you have identified the qualities that are important to you, you will need to identify people who have some or all of them.  Here is one of those hard conversations.  What if the best choice isn’t a family member?  Maybe your son or daughter is the apple of your eye, but s/he doesn’t have the qualities to make decisions for you?  Same goes for siblings, spouses, and friends.

This may be where you need to consult with a trusted friend, therapist, spiritual counselor, or medical professional to work through the uncomfortable feelings and come up with a plan that meets YOUR needs.   Therapists, counselors, and medical professionals can help facilitate these conversations, and may be a welcomed authority that will take the pressure off of you.

What about Caregivers? 

More and more Boomers are experiencing an interesting dilemma – those who we reasonably expect to care for us (partners, spouses, children) may be experiencing their own health challenges and may not be able to.  Did you know that the majority of caregiving in the United States is provided by family members – typically spouses?

Based on what many of my patients have experienced, finding qualified care is daunting.  This is for a couple of reasons.  One is that most of us are not skilled at the hiring process – interviewing, checking references, figuring out how much to pay and following up.  Another is that there aren’t that many caregivers to choose from.  So it pays to do some research ahead of time. AARP has a wonderful website that will help you determine what you need.

You really should do your research ahead of time – here’s a brief checklist

1. Ask friends about who they use and what they experienced
2. Call your local Council on Aging and ask them if they have a referral list
3. Understand your legal obligations (e.g., taxes, insurance)
4. If you hire an individual who does not work for an agency, (known as an independent contractor), make sure you are not at risk for having to pay for unemployment insurance or disability insurance if the person gets injured while working for you.
5. Know the going rate for services in your area and know the laws about minimum wage.
6. Understand how much this will cost and how payment is to be made.  Negotiate if you can.

Written Instructions for Others

Knowing what you or your loved one needs so you can specifically ask the potential caregiver if s/he is ready, willing, and able is essential in order to provide that care.  Many family members just “know” is needed.  But letting a ‘stranger’ into that implicit web of understanding can be a challenge.

For example, many people have their medications stored outside of the pill bottles they came in.  They have patterns and habits of taking their meds, or bathing, or making meals that seem obvious to them but may be confusing or illogical to someone outside of the family.

Or, you may eat only certain foods at certain times, prefer to watch sports, movies, or a shopping network, or, most importantly, you may have 14 remotes that each need to be used in a certain order so that you can watch that movie!

Most caregivers are not qualified mind readers.  (For that matter, most spouse’s aren’t either!).  It can be an eye-opening assignment to identify each of your unique preferences and habits!  No sense in causing undue stress and tension when you are not at your best.  So doing this ahead of time is essential.

Summary

So let’s summarize.  It is vital that you have these hard conversations before things start to go south.  Acknowledge they are hard, and have them more than once.  Use resources of trusted advisers and others who have gone through similar experiences.  (AARP and Alzheimer’s Foundation).  Learn what is involved in hiring a caregiver if you aren’t going to be the one who provides the care.  Take some time to write down what is unique and special about you and your loved ones so that if someone from outside your network takes care of you, he or she can easily fit in.

A little planning ahead of time can make a big difference for all.

Thanks for reading.