When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.
“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!
Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.
Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?
What’s a son or daughter to do? Wing it?
Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.
In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.
What’s a son or daughter to do? Follow mom’s wishes.
What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.
Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.
What’s a pitcher without a catcher? A quarterback without a receiver? A point guard without a center? Individuals – that’s what they are. They are not a team. Caregiving should never be an individual effort because quite frankly, one person can not do it all.
Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get. For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals. As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever. Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor. He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care. Getting on the approved list might involve one or both of the following:
- Facility Care Plan/Residential Agreement. Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition. There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care. Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns. If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
- Power of Attorney for Health Care. This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own. I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.
Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.
Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths. Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks. As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load. The good news, however, is that the GM is not alone – there are additional members of the team.
FINANCE MANAGER. Your older sister is a finance whiz who’s very comfortable crunching numbers. She gets to take over the day-to-day system of bill paying, investment monitoring, and the like. You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.
INSURANCE MANAGER. One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare. Congratulations, his strength will contribute greatly to the whole. But you don’t have to work for an insurance company to excel at this task. Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies. The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid. This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance. But effective Finance & Insurance Managers can successfully get the job done.
TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month. Terrific.
That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized. Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way. This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.
FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING. Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road. If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them. My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.
A team’s success is attainable – but each member has to dedicate themselves to the task at hand for that to happen.