Today, April 16, is National Healthcare Decisions Day. It’s a day dedicated to helping people think about advance care planning - which is really about quality of life. If you’ve been reading my newsletters and keeping up with me on social media, you know that I often highlight the importance of getting your advance directives (health care proxy, living will, POLST) in order. The current situation with COVID-19 — heightened risk as well as a prohibition on having any visitors in hospitals, skilled nursing facilities, and senior communities — drives home this point even more. Spending time to get your important health information organized and sharing it with the appropriate people is critical to helping your health care proxy and family members advocate for you in an emergency. Keep reading below for more info.
Stay well and stay home!
I’ve written before about creating a Personal Health Information Binder. Some people are calling it a “Grab and Go Kit” or “Emergency Health Kit.” Regardless of the name, the idea is the same: Organize your important health care-related information in a binder or folder. Keep a copy by your front door or somewhere where an EMT would see it and grab it to take with you to the hospital in case of an emergency; therefore, the front of it should say in big letters: TAKE IN CASE OF MEDICAL EMERGENCY. Also, make sure your health care proxy has a copy of all this information. If your health care proxy doesn’t live near you, make sure a trusted neighbor or friend knows that you have this folder and where it is in case someone needs to bring it to the hospital.
What should be in this folder/kit:
I also recommend keeping your cell phone fully charged and having an extra charger in your folder or binder. If you want to have a small bag prepared too, you could include extra hearing aids/batteries and glasses, if needed, as well as some toiletries.
If you have not set up a patient portal, now is a great time to do that. In “normal times,” it’s an easy way to contact your doctors and keep track of your test results and upcoming appointments. Share the login information with your health care proxy and trusted family members in case they need more information to help advocate for your care. While you may think that the health care professionals taking care of you will have access to that information, it’s entirely possible that you might not be taken to your usual hospital.
(2) Advance care planning is about control. In this time of so much uncertainty and fear, anything that gives us a sense of control can be comforting. It’s the perfect time to think about your wishes and who you want to be in charge of carrying them out for you, if necessary. Five Wishes is a national document accepted by almost all states. It includes a form to list your Health Care Power of Attorney but also includes an easy-to-use way for you to let people know what kind of care you would want. Other great resources include The Conversation Project and MyDirectives.com
Feel free to contact me if you have questions about or need help with any of this -- gayle@InTuneHealthAdvocates.com or 847-920-8238.
Surreal. Unprecedented. These are words we are hearing over and over to describe the current situation we are in. The vast majority of you reading this monthly newsletter live in a state that has already implemented a lockdown order. While I don’t think there’s much new I can add to what you have already read about how to prevent COVID-19 and what the symptoms are, I am sharing some important information below about how the health care system is being impacted and how that affects us personally.
Also, the need for advocacy in health care matters has not stopped during this time. InTune Health Advocates, LLC is still open for business… remotely. I am still calling health insurance companies and providers about surprise bills, denials, and billing errors; I am still helping families work through difficult decisions about discharge planning from hospitals and skilled nursing facilities; I am still helping clients research information about treatment options; and more.
Important reminders and information:
After my last blog post about how to talk to your aging parents, my friend’s dad (a faithful reader of my blog!) wrote to me and said “the flip side of this is for parents to learn how to handle the often inevitable conversation with their children. Y’know: How to have the conversation that you don’t want to have but know that you eventually have to have.”
It turns out that there is a whole lot of advice out there for adult children who need to have difficult conversations about aging, caregiving, and safety with their parents but very little advice for the reverse. How can aging parents be more open to having their adult child(ren) approach them about these topics? A Google search found one related article, What Aging Parents Want from Their Kids, which offers anecdotal observations and advice — with a theme being that aging parents often feel as if they’re constantly being assessed by their children. (An amusing, and close-to-home takeaway from this article is that apparently aging parents don’t like it when their children and grandchildren go through their refrigerator pointing out everything that is past the expiration date!)
The above article referenced a 2004 SUNY-Albany study where older parents were asked in focus group interviews about their relationships with their adult children. Here are the main findings:
“When discussing their adult children, participants reveal strong desires for both autonomy and connection, leading to
ambivalence about receiving assistance from them. They define themselves as independent but hope that children’s
help will be available if needed. They are annoyed by children’s over protectiveness but appreciate the concern it
expresses. They use a variety of strategies to deal with their ambivalent feelings, such as minimizing the help they
receive, ignoring or resisting children’s attempts to control, withholding information from children to maintain clear
boundaries, seeking others as confidants, and rationalizing children’s unavailability. They actively strive for a balance in
their relationships with children.”
What does that mean in plain language? Family relationships and feelings are messy!
So, if you’re an “aging parent” and your adult children are trying to talk to you about difficult issues, what can you do to help the conversation go well?
Bottom Line: It’s all about communication. And - same bottom line as last month’s article - BOTH adult children and aging parents should take the time to plan for and start having these difficult conversations before there is a crisis. You’ll be glad you did.
I was eavesdropping on a conversation the other day. Two women were discussing how one of them was trying to convince her dad to move from the home he’s been in for decades to an independent living community. I eavesdropped because I was already working on this blog post, after recently sharing an article, Parenting Your Aging Parents When They Don’t Want Help, on this topic on LinkedIn, and was interested in how she navigated the conversation.
The article generated a lot of conversation, both on- and off-line. While I’m not a fan of the use of the word “parenting” in the title (I doubt aging parents want to feel like they’re being parented by their kids!), I think the article is filled with important, spot-on advice for having difficult conversations. I encourage you to read the entire article if you’re facing a situation where you need to talk about a challenging topic. Difficult conversations with your parents include wanting them to move out of their home, hire a caregiver, discuss their end-of-life wishes, share their financial situation, and more. (Note: this post assumes that your parent has the capacity to make their own decisions.)
The woman I referred to above (and who gave me permission to use her story in this blog) shared that one of her dad’s arguments for wanting to stay in the house was because he had so many wonderful memories there. He thought he would lose the memories, the feelings that go with the memories, if he moved. She responded by telling him that she completely understands that feeling. However, she pointed out that she hadn’t lived in that house since college but still holds on to all the memories from her childhood there. That was a great response. She acknowledged the validity of his concern, shared that she truly understands the issue, and let him know that the memories stay with us wherever we go. Her dad was then willing to continue the conversation.
Some thoughts on having difficult conversations with aging parents:
What happens if they don’t agree to get a caregiver or move or get a medical alert system or whatever you are hoping they will do… and then they, for example, fall and break a bone. This may cause you a lot of stress and missed work days and more - but remember, it’s not your fault. You don’t need to feel guilty (although I realize that’s easier said than done). The silver lining is that they may become much more open to listening to you!
Bottom Line: Take the time to plan for and start having these difficult conversations before there is a crisis. You’ll be glad you did.
A friend recently sent me a great TED Talk titled: 4 Questions You Should Always Ask Your Doctor (by Dr. Christer Mjaset*). She knew I’d be interested because I speak to community groups about how to talk to your doctor.
The 4 questions Dr. Mjaset recommends we ask our doctors are:
These questions work in all sorts of situations:
Your concerns may be medical/clinical (e.g., are there side effects?) or they may be financial (e.g., will my insurance cover it or will I have to pay out of pocket?). While you may not think you can question your doctor’s advice, trust me, you can!
*Christer Mjåset, M.D. is a neurosurgeon, author, columnist and lecturer who currently works as a Harkness fellow in Health Care Policy and Practice at Harvard T.H. Chan School of Public Health in Boston studying value-based health care models.
Choosing the right health insurance plan can be overwhelming. It may be tempting to just keep the plan you currently have rather than look at spreadsheets and dense, hard-to-decipher descriptions of coverage options.
That’s a mistake. Whether you’re over 65 and inundated with advertising about Medicare open enrollment options, getting your insurance through the Marketplace, or working for a company whose annual open enrollment is taking place this fall, it’s imperative that we review our current plan and see what our options are for 2020.
Here are some things to keep in mind regardless of where you get your health insurance:
Medicare Open Enrollment started October 15 and you can’t watch TV these days without seeing commercial after commercial about different Medicare insurance options. During Medicare Open Enrollment you can:
A few tips:
Health Insurance Marketplace and Employer Health Plans
Bottom line: Be sure you understand your options, get your questions answered, and know your preferences (cost, access, convenience, willingness to accept risk, etc.) before you make a decision. Contact me if I can be of help.
“My doctor put me on XYZ medication? Do you think I should be taking it?”
“My 3 year-old has a rash and is throwing up. My doctor said to bring him to the office. What do you think I should do?
“My dad sometimes seems confused and sometimes doesn’t. Does he have Alzheimer’s disease?”
The above are simplified versions of actual posts I have seen on community Facebook groups. Then 50-100 people respond with their opinion. While these groups are useful for many things, the people responding are not medical experts — and if they are health care professionals, they do not know all the specifics of your situation. If you want credible health information, you need to go to credible health sources to get it.
So, what is a “credible health source?”
Your doctor. You might not like what your doctor has to say, or you may not feel the information you get from your doctor is complete, easy to understand, or right for you, but your doctor/health care provider should be a credible source of health information. If you don’t feel that way, it may be time to try a new doctor.
SOME sites on the Internet. Not all. How do you know the difference?
This Chicago Tribune article perfectly captures the spirit of a program psychotherapist Allison List Hutner and I have been facilitating. Please contact me if you’d like to learn more about the program or have us facilitate a session for your organization, book club, family, or friends. You can also participate in this program at the Vernon Area Library on Wednesday, October 2 at 7:30pm (register here) or the North Suburban YMCA on Thursday, November 7th at 11:15am (register here).
Read the entire article here.
I recently came across two important articles for older adults and wanted to share them with you.
This article provides an excellent framework for having an honest, helpful discussion with your surgeon before deciding whether to have surgery. It provides questions that really address and explore a patient’s values about quality of life. I encourage you to take a few minutes to read it.
Did you know that many regularly used medications can cause confusion in older adults? Be sure to read this article to learn more about anticholinergic drugs (eg, antihistamines) and how they can be harmful. Searching the Beers list for potentially inappropriate medications use in older adults is also a must; if you see medications on the list that you or a family member is taking, don’t hesitate to ask your doctor about it.
First, it can be confusing when people talk about Alzheimer’s and dementia. Are they the same disease? Dementia is an umbrella term that includes Alzheimer’s disease, vascular dementia, Lewy body dementia, mixed dementias, and frontotemporal degeneration. Alzheimer’s disease is the most common form of dementia. If you're concerned about yourself or a loved one, be sure to consult with a health care professional.
Wondering what signs and symptoms you should be concerned about versus what is considered “normal aging?” Here is a link to 10 early warning signs to watch out for, courtesy of the Alzheimer’s Association. Symptoms can range from frustrating, difficult to manage, or harmful for the person as well as for family members and friends. For example, hearing someone tell the same story over and over can be frustrating but it’s not harmful; however, wandering off in the middle of night can be extremely dangerous and needs to be addressed appropriately. This article has a lot of detail about symptoms, stages of the disease, and coping tips.
Caregiving is tough as well as rewarding. An important message caregivers will hear, regardless of the illness, is that self-care is critical. A wise person once told me, during a health crisis, to remember what we hear every time we go on an airplane: you have to put your own oxygen mask on before helping someone else put their’s on. In other words, if you can’t breathe, you can’t help somebody else breathe. Look for local caregiver support groups, find someone to give you a break so you can run errands, exercise, have dinner with a friend, or do whatever reenergizes you.
If you are caring for someone with Alzheimer’s or a related dementia, take time to learn tips and techniques for maximizing cognitive symptoms, engaging the person in meaningful activities, and having a person-centered care mindset. Techniques for caring for and helping someone maximize their cognitive function include:
There are options for getting help with caring with someone with Alzheimer’s or related dementias including in-home caregiving, adult day care, respite care, and memory care communities. Don’t feel like you have to do it alone. Search for options that work for you and your loved one. These can be expensive options but there may be programs in your area that provide free or reduced services depending on financial need, veteran status, or other factors. If you’re considering placing your loved one in a memory care community, here are some questions to ask when touring the communities.
If you have long term care insurance, be sure to know what services and options are covered. Usually, someone with Alzheimer’s or related dementias will need to provide evidence that (1) they have severe cognitive impairment, and (2) they need substantial assistance with at least 2 activities of daily living (ADLs) such as bathing, eating, dressing, and transferring. Read your policy ahead of time and be sure to work with your physician to document these needs appropriately.
If you’ve been reading my blog, you know I often talk about the need for advance care planning, making your end-of-life wishes known to family members. It is critical to have these conversations and have documents in place before a person’s Alzheimers or other dementia gets too advanced and they no longer have the capacity to make these decisions. You don’t want to find yourself in a situation where you are wondering what your loved one would have wanted you to do. Find resources here.
Write something about yourself. No need to be fancy, just an overview.