For some of us who are now “grown children”, communicating with our parents may have been a life-long struggle since childhood. But even if it wasn’t, under the best of circumstances (for most everyone) imparting information about anything relating to helping our older parents in late-life can be quite a complicated endeavor.
When it comes to being able to speak openly and directly to one’s mom or dad about all kinds of topics relating to their aging there seem to be two types of parents:
1. Parents that welcome your questions, thoughts, opinions and ideas
2. Parents that don’t (and for many families this includes parents who used to be open and receptive and no longer are)
What good is it to have the “best laid plans” if there is no one listening to them?
This article is an introduction to the massive subject of “aging lifecare”. It is my hope that it will serve as a jumping off point to get the crucial two-way conversation started before there is no “two” way.
In this article I will attempt to provide some groundwork to support you in serving as an advocate (for your parents, loved one or even yourself) before disaster strikes – because it will.
First – Recognize why these conversations must occur
Second – Face your own resistance. Don’t brush it off. You do not have time.
Third – Understand THEIR resistance to accepting your help.
Fourth – Understand the issues you need to address
Fifth – Communication tools – a big part of this article
Sixth – Where to get help when it is not working
Seventh – Additional resources
With so many people – the journey starts with a telephone call about a medical crisis.
Not having a clear plan in place ahead of the crisis may lead to costly choices made under duress resulting in stress for almost everyone (because almost everyone is unprepared).
If you wait until your parents are in the midst of a health or financial crisis there may be fewer choices available to them or you may have to make decisions quickly.
When parents put the burden on the children to make decisions in a time of crisis – one (of several) things that usually occurs relates to an increase in financial risks related to unplanned medical costs.
You Can Avoid This: Get the conversation started before there is a crisis-driven need. Don’t wait for a major medical incident such as a bad fall or heart attack.
1. What your parents want
2. What their plans are
3. What role they need you to play
4. Medical Record locations
5. Health insurance and life insurance information
6. Wills, birth certificates, marriage licenses
7. Advance directives
8 Banking information
9. Investment information
10. Deeds and titles
11. Safe deposit box location if applicable
12. Hidden valuables
When Your Aging Parent Needs Care: Practical Help for This Season of Life gives a good insight into why you want to ask the above.
It might seem ideal if we could skip the conversation altogether.
When you and your parents don’t talk about their future before they get sick, besides increased financial risks, you leave the door open to confusion over expectations and family roles.
Serious illness or certain chronic conditions can cause older adults to lose the ability to make their own health decisions or oversee their own medical care. Family members must often make decisions due to a health emergency or mental decline and they may have no clue as to what their mom or dad would have even wanted.
Yes – you really need to know ahead of time. It matters. There are lots of horror stories from adult children who waited:
A typical wrenching scenario:
You cannot access your parent’s funds (and mistakenly thought that Medicare pays)
And then there is this not uncommon scenario:
If you haven’t spoken with your parents yet about any of this, you’re not alone.
A 2016 survey by Care.com found that 54 percent of grownup adult children would rather talk to their own kids about sex than talk to their parents about money, health, end of life care, not being able to drive and a slew of other topics.
Your parents probably don’t want to talk about this either. A Fidelity Investments survey found 43 percent of parents haven’t had detailed conversations about long-term care with family members (and an additional 23 percent haven’t had any conversations at all.)
On a personal note, I clearly recall fear radiating through my body the first time it hit me that I was responsible for anything related to my father. From the time I was a little girl, not unlike many other Dads, he promised me I never would need to worry about anything “EVER”. He was bigger than life continually assuring me (way into my 40’s) that he would always be there to “take care of everything”. He was Superman in my eyes (and I can still see that charismatic smile as he reminded me of this). What a huge unrecoverable mistake I made to believe this.
I will never forget the call from my mother in 2008. She lived 3500 miles away at the time. “Emily help me. Come home right now. Your father was diagnosed with Alzheimer’s disease and he never signed up for Long Term Care Insurance. I don’t know what to do or how to handle anything.“
I had no clue either.
In fact, it literally had never occurred to me that a day like this would come. I found it very stressful to listen to this plea for help from my mother.
At that time, neither of us knew much about this disease, the finances, the legal issues, (or anything else.) Frustrated that my mother was suddenly leaning on me, I had no idea what to do first because I did not know what I did not know. I also did not know that she herself had early dementia.
I remember my dream that night of walking into AAA to get the map with instructions of what to do first (if you happen to be reading this from outside of the USA – AAA supplies paper geographical maps for auto trips).
It is not uncommon for grown children to refuse to deal with any of this – even when their parents attempt to initiate conversation to make their wishes known (in order to make it easier on their kids before a future crisis hits.)
The one thing I felt certain about was the way my father was feeling – stigmatized and shame from this diagnosis. I can only imagine if he had initiated that call on behalf of himself. Actually, I can’t. But if I could, like so many of the other grownup long distance kids and siblings, I probably would have been in complete denial.
Yes, there is definitely resistance to even thinking about becoming responsible for parents who have always been responsible for you.
On the other hand, what if that resistance is valid? What if your memories of growing up were with parents who were unsupportive, neglectful or abusive?
Either way, prepare yourself for A LOT of turmoil if this is not dealt with ahead of time.
I know this may be repetitive, but for everyone’s sake, it’s better to have these conversations before the crisis hits.
The good news is that once adult children start the conversation, according to the Care.Com 2016 Survey, they feel informed (33%), hopeful (32%), and relieved (24%).
Are you wondering exactly what “the conversation” is about and how to get started? I am getting there. There’s just a bit more to cover first.
In your parents’ eyes, no matter what you have achieved or how old you are or how much you think you know, you are always always always their kid. So you might as well forget about parenting your aging parents.
How Some Parents Interpret a Grown Child’s Good Intentions: “Damned if you do and damned if you don’t”
One Typical Scenario:
The adult child is in his/her 50’s and wants to help the mom (in her 70’s).
The mother, widowed early on, is fiercely proud of her success as a single mother.
This is what she probably thinks:
“My daughter/son is always offering to do this, that and the other thing for me. It drives me crazy because obviously my kid thinks I am not competent.”
And as a result, she stops sharing even when she really does have a problem.
And for any older parents reading this – take heed:
No one said it would be easy to be willing to allow your children to really help you. If you begin to put these documents in place it will be easier for you (and them). You will be lessening the turmoil for future generations. If you wait – if you do not take care of these things with your children – if you resist their requests for information, you are guaranteeing future stress and disruption for your family. Talk to your grown children about this. Let them know who is responsible for what. Tell them where the paperwork is. And do this before there is a medical crisis!
“One of the scariest things to people as they age is that they don’t feel in control anymore,” says Steven Zarit, a professor of human development and family studies at Pennsylvania State University. He goes on to elaborate a classic scenario about snow shoveling that I related to – only in my case – it involved my own father nodding his head in agreement while I told him not to drive in the middle of the road as I clung to my seat belt watching him continue to drive on the line in the middle of the long crowded Florida two- way highway completely ignoring what I had just said.
Perhaps that was his 86yr old way of holding onto a dwindling sense of independence.
In a 2004 study, two professors from the State University of New York at Albany, Glenna Spitze and Mary Gallant, set up focus groups composed of older adults with the goal of exploring and analyzing what aging parents actually want.
What they discovered is that these aging parents wanted to maintain their autonomy as much as their sense of connection to their adult children.
Group participants expressed their ambivalence in several ways. They ignored and resisted what they experienced as their children’s attempts to control them. They were irritated with overprotectiveness, minimized the help they received and viewed themselves as independent.
And at the same time… expressed appreciation for the good intentions of their children and hoped help would continue to be available as needed.
Professor Zarit’s advice to the adult child:
You can ignore or continue to dance around the issues and pretend there’s no rush or imminent problem. But when it’s too hard to ignore, take a deep breath, learn about what you need to know, set aside the time and consider making use of some of these tips.
Figuring out your parents’ specific needs, understanding the options and making decisions can feel overwhelming. These feelings will lessen to the degree that you educate yourself ahead of time.
Begin by researching the subject of aging in general. Do whatever you can to learn about the specific physical and/or cognitive challenges your mom and dad (or spouse) may be experiencing and how those challenges will change over time.
Just because someone does not have a diagnosis of “dementia” does not mean it will not show up in the future. As one example, if you notice your mom or dad repeating themselves constantly try researching cognitive decline and all that this involves in terms of future preparation and options for care over time.
No one is born knowing the issues or answers relating to the vast field of aging and eldercare. Take small steps and do information gathering research. This is the best way to prepare yourself, your siblings and other family members to be as helpful as possible for the conversations and decisions ahead.
The information you acquire as you do this research will give you the confidence and credibility you need to begin this conversation with your parents. If you do this now it will be easier to put systems in place for the future before it gets worse (because it probably will).
There are tons of resources available online to help you begin to navigate the sensitive and confusing subject of senior care. Here is some very basic information to get you started.
Three examples of Information You Will Probably Need To Discuss
1. Who will be the executor of the estate?
2. Who will manage finances?
3. Who will care for Mom and Dad?
This Fidelity survey illustrated some of the tensions that arise from not discussing these issues. For example, 72 percent of parents expect one of their children to assume the role of long-term caregiver – however, 40 percent of the children identified as the caregiver didn’t know it.
Forty-five percent of parents and children don’t agree at all on which child, if any, will be the caregiver.
When it comes to where parents will receive care, this Care.com survey found that most adult children would consider having their aging relative live at home with them. Unfortunately, these adult children underestimate the costs of in-home care, both in terms of finances and their personal lives.
There is certainly quite a bit to learn upfront.
Do your research. Then, find out exactly what your parent(s) want for themselves by discussing their preferences and expectations with them.
Do this before the need arises, when families are in a better place to make informed decisions for the care of parents.
Do this prior to meeting with your parents:
1. Educate yourself by researching senior care and related issues (review above links).
2. Learn about the physical and cognitive challenges your parent (or spouse) may be experiencing and how those challenges will change over time.
Now you are ready to make the action plan for communicating with your parents.
As with many difficult topics, beginning the discussion is often the hardest part.
1) Decide who to include in the first meeting with parent(s):
Without family consensus ahead of time, these important meetings between parents and grownup children or other family members easily become emotionally charged and argumentative. Parents will withdraw.
2) Decide who leads the discussion:
3) Outline issues to discuss at the meeting:
4) Figure out where to hold the meeting
5) Think about ways to start the conversation
6) Never forget the goal of this meeting – Their safety, peace of mind, health, wellbeing and quality of life.
7) Do not minimize what matters to your parents and do not rush
You begin to help as soon as you really begin to listen.
8) Avoid Information Overload
9) Prepare for Resistance.
10) Prior To The Meeting Practice Ahead of Time
We all know how this works. In your parent’s eyes – you are still a child. An outside expert can come in and say exactly the same thing you have been saying all along – but they listen to that other person.
Options for Help?
1. Use whomever you can to get them even a little bit of help
Providing either of these options is better than giving up and often well received by resistant parents or family members.
Here are several more examples (from the plethora of reasons) to consider hiring a third party:
Have you ever noticed how everyone advertises that they are top quality and wonderful?
Unfortunately a variety of professionals describe themselves as “Senior Care Professionals or Care Managers”. These generic descriptions can be misleading.
Having that title on a business card or website does not necessarily mean that this individual is what you need: an unbiased authoritative expert in senior adult needs and resources.
With that said, I urge you to view the absolute best resource for finding the help you will need to maneuver the challenging continuum of care related to your parents current and future needs. Certified Aging Life Care Managers (primarily RNs, Social Workers and Gerontologists) are THE qualified experts to support and guide you as you navigate this rocky landscape.
This is not an easy task. Accept that you can only work with what you have.
Some parents are just too private about their affairs. They have their reasons. Perhaps they are unwilling to allow their adult children in as confidants. They may refuse to bring in an outside person such as an Aging Life Care Manager.
When a crisis occurs (or their mind goes), we, as their grown-up daughters and sons, can only do the best we can with the information we have at any moment in time.
When we try with all our might and do the absolute very best we can with what we have, there is no place for guilt and self- remorse. Just give it 150% and then let it go.
And from that moment forth – take care of YOU.