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.
child is still on your health insurance plan. Please refer to this article with advice from a lawyer about what forms - and an explanation of each form - you should have your 18+ year-olds sign. You can complete these forms on your own or meet with an estate planning attorney. (Special thanks to Emily Rozwadowski of Spencer & Rozwadowski, LLP for reviewing this information.)
Briefly, the four important documents are:
Once you’ve filled out the forms, keep them in a secure place. Also, be sure to scan them so you can easily access them from your phone as well as from your child’s phone.
So, while you’re checking towels, sheets, comforter, etc off of your college packing/to do list this summer, please add “fill out important forms!”
Disclaimer: this blog does not constitute legal advice. If you have specific questions about what forms to use or how to fill them out, please contact an estate planning attorney.
I recently became intrigued with a program known as Death Over Dinner. No, it’s not a murder mystery party. And it’s not as depressing or morbid as the title may suggest. It’s also not just for older people.
Last week, I facilitated this program with an amazing group of women in their 40s and 50s. Many of them were hesitant and skeptical ahead of time. We discussed deep, important topics. “if you had an hour left, what would you feel was unresolved?” A discussion on what we would say if we had to give our own eulogy. And more. Some of the comments after the program included “that was so worthwhile” “can we do this again?” “this was hard, thought provoking and inspiring.” “I felt exhausted when I got here but energized when I left.”
The long term goals of the program are multi-fold:
My colleague (and traveling Medicare-certified social worker), Allison List, LCSW, and I will be facilitating this program at the Vernon Area Library and the North Suburban YMCA this fall (click here for program dates), and are talking with several other organizations. If you’d like us to facilitate a program at your organization or for your family/friends, please contact me.
Resources to help you start the conversation… and fill out your advance directives:
The Conversation Project
The Five Wishes
State-specific Advance Planning Forms from the American Bar Association
I recently led an engaging and informative talk about “Talking With Your Doctor: Making the Most of Your 15 Minute Appointment.” I’ve always believed that most of the problems people experience with navigating the health care system are a result of poor communication and coordination. It can be difficult to question providers, know what to ask, and be able to process the information. It is especially challenging to do so when you are emotionally overwhelmed by the situation.
The most important advice is to Speak Up and Ask Questions! It’s your health, so take charge of it. If you don’t understand what the doctor is telling you, ask them to repeat it. Ask questions about medical tests, medications, your diagnosis, treatment options. Speak up about your symptoms, your needs, your values.
Prepare for your appointment as if it’s a business meeting - have an agenda, put your priority items first in case you run out of time, and end the appointment with a clear understanding of what was accomplished and an action plan for next steps.
This brochure about Talking With Your Doctor, from the National Institute on Aging is a great resource for people of all ages about how to prepare for and get the most out of appointments with your doctors. It’s filled with advice, tips, and worksheets. I strongly recommend taking time to look at it and using it to prepare for your next appointment.
Ask me how I can help with your patient-doctor communication… or to schedule a presentation for your organization.
A couple of weeks ago, I was prescribed a new medication... that had a
hefty price tag! My first question was “what’s the cash price?” When that wasn’t
any cheaper, I checked with the pharmacy tech about the coupon from the drug
manufacturer’s website (apologies to everyone behind me in line at my
local pharmacy). I ended up leaving the prescription at the pharmacy and
went home to look into more options.
What can you do to lower your prescription costs if a medication you need isn’t covered by your health insurance?
So, what did I do about my medication? Well, in my case, the GoodRx price was only a few dollars less, there were no substantive coupons available for this particular medication, and the pharmaceutical assistance program was income-based. My doctor gave me free samples while we work together to request an exception from my health insurer. It’s a long shot but it’s worth a try because if you don’t ask, then the answer is definitely no.
Have you ever received a denial from your health insurance company? Don’t take it as final. You can appeal. This article has some good advice (including from me) about how to appeal. I’m happy to help with this as well.
To beat an insurer at its own game, keep fighting. “Insurance companies are counting on attrition,”
said Byck. “If you stick with it, your chance of success goes up.”
This may seem a little old-fashioned, but many patient advocates recommend taking the time to create a Health Information Binder. You’re already thinking “but everything is in my electronic health record” or “I keep that information in my phone.” Here are some reasons it’s helpful to have a binder as well:
What should you put in your Health Information Binder?
Find a template here.
It’s the season… for open enrollment. Whether it’s Medicare, the Health Insurance Marketplace, or some employers, fall is when many people can switch health plans for the coming calendar year. Do you have all the information you need to make informed decisions during open enrollment?
SCROLL DOWN to see the article about key health insurance terms.
Below are links to helpful resources about open enrollment:
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.
How many of us really understand health insurance? Have you read your health insurance policy? (Sounds fun, right?) I’m highlighting a few key terms below; you can also look at this helpful glossary to better understand your
And then there are allowed amounts, balance billing, and so much more. Read the policy benefits booklet carefully. Be sure you understand what services are covered, when you need to obtain prior authorization or get a referral before seeing a specialist, and that just because your physician is in-network, it doesn’t mean that the hospital he or she may treat you at is also in-network.
Bottom line: the more you know in advance about your health insurance plan, the better prepared you can be to obtain the care you need as well as manage your financial risk.
1. Communication, Communication, Communication. As with just about everything in life, most issues that cause problems in the adult-children-aging-parents relationship can be alleviated by early, direct, and empathetic communication. Have the difficult conversations with your parents before there’s a crisis; these include discussions about aging in place versus moving to a senior housing facility as well as end-of-life planning. You can think of it as payback for when your parents had to explain the-birds-and-the-bees to you… but don’t forget that your aging parents are adults and need to be treated that way. Also, try to put yourself in their shoes and understand why they may be resistant to what you consider to be helpful advice.
2. Fill out Advance Directives (health care power of attorney (HCPOA), living will, financial power of attorney). I recently was on a conference call with the adult children of a woman who was critically ill in a hospital in another part of the country. None of them knew if she had designated a HCPOA or had completed a living will. According to The Conversation Project, “82% of people say it’s important to put their wishes in writing but only 23% have actually done so.” It really is a gift to yourself as well as to those you love to make your wishes known and designate someone to carry them out for you. My website has some links to end-of-life planning information. You can fill out these forms yourself or a professional can help you. Be sure to designate a financial power of attorney as well.
3. Share information. Building off of the communication advice, it’s also a good idea to share important information with whoever is your designated HCPOA as well as with others who are close to you. It’s hard to be truly helpful if you don’t have the information you need. If you are or may be caring for aging parents, try to have the following information about them:
4. Practice self-care. If you are taking on a lot of caregiving duties, be sure to take care of yourself. As the flight attendants explain at the beginning of every flight, “put on your own oxygen mask before helping others.” Take time for yourself so that you can have the patience and energy to be there for your family members who need you.
5. Consider professional help. Clearly, it’s difficult caring for aging parents who don’t live nearby. But even if you live in the same city, juggling work, raising children, and caring for aging parents all at the same time is a challenge. A private patient advocate can help in these situations. A trusted patient advocate can accompany people to doctor appointments - including preparing for and following up after the appointments; help smooth transitions between hospital, rehab facility, and home; find resources to help keep older adults in their home; research treatment options; and be a calm voice of experience in an otherwise stressful situation.
Bottom line: planning ahead, talking to each other, and taking care of yourself can make caring for aging parents less stressful and more rewarding for everyone involved.
Write something about yourself. No need to be fancy, just an overview.