Cathy Chester | An Empowered Spirit

Why I Wake Up Worrying About The Future

I woke up in a sweat of tiny beads pouring down my face, my feet dangling over the side of the bed and my nightgown tossed askew. I glanced over my right shoulder to check on my husband, worrying I disturbed him, but he was sleeping peacefully beside me.

It was startling to wake up so abruptly, particularly since my menopause ship sailed years ago. This wasn’t the first time I woke up this way; over the past few months it’s happened a lot.


I have the same two recurring nightmares..

The first one is something that happened a long time ago. When I was in the Brownies in first grade we visited a local nursing home at Christmastime to sing carols and deliver cookies to residents. Our troop leader told us some of the residents never had visitors, so the holidays was a great time to bring them some cheer. I looked forward to brightening their day.

That excitement was short-lived.

When my troop entered the lobby I was hit with a horrible stench of Clorox, mildew and cheap perfume. I can still smell it now. I’m (more than) ashamed to admit how frightened I was by the rows of old, disheveled-looking residents sitting in wheelchairs, some hooked up to oxygen or staring blankly into space. They scared me to death and I still remember how much I wanted to go home.

Shame on me.

Nightmare number two stems from something more recently. I was visiting someone in a rehabilitation facility when, on my way to the room, I saw several patients lined up in the hallway, alone in wheelchairs, waiting for an attendant to take them back to their room. I remember one woman in particular who looked despondent, her eyes dancing wildly and her limp body moving about as if she was going to scream. She had drool all over her face; her illness apparently leaving her unable to clean herself. No one to care for her. No one to care. That image haunts me.

These nightmares reliably visit me. Sometimes we dream ridiculous, nonsensical images but these make perfect sense.

We recently met with a certified financial planner who’s also well versed in insurance coverage. The main reason I wanted to meet with him was something that was on my mind for years. Something I heard, read and talked about but desperately needed to hear the words I was dreading to hear.

My parents, in-laws and many of their friends purchased long term care insurance (LTC) several years ago. LTC is an insurance sold in the United States, United Kingdom and Canada that helps with the cost of long-term care beyond a predetermined period. It generally covers care not covered by health insurance, Medicare or Medicaid.

According to AARP:

“The phrase “long-term care” refers to the help that people with chronic illnesses, disabilities or other conditions need on a daily basis over an extended period of time. The type of help needed can range from assistance with simple activities (such as bathing, dressing and eating) to skilled care that’s provided by nurses, therapists or other professionals.”

Policies cost less if you purchase LTC when you’re younger and in good health. Premiums are expensive and often go up over time. If your income goes down and you’re unable to afford payments you could lose all you’ve invested in the policy.

I’ve seen up close what LTC can do for a policyholder if they become ill. It’s the difference between night and day. Having LTC means continuing to live (as close as possible) to the way the patient is accustomed to, allowing for the support of therapist, nursing care and stays in hospitals or rehabs. It may even help defray the costs of living in an assisted living facility.

Depending on the type of policy you purchase it can mean the difference between receiving the care you need, or not.

When I think about this fear and anxiety creep in. Why? Because our financial advisor proclaimed the words I was dreading to hear:

“No insurance company will cover someone diagnosed with Multiple Sclerosis.”


My old pal, the National Multiple Sclerosis Society, added insult to injury when I read this:

“Long term care insurance is rarely available for purchase by an individual with MS after their diagnosis.”

So there you have it. The reason for my nightmares. If I become ill and in need of costly medical care I may be one of those elderly ladies sitting in a hallway with no one to care for me.

For someone who talks about facing our fears this is my biggest one.

Another reason for concern? When I was diagnosed in 1986 doctors informed me I’d always live with the type of MS I currently have (relapsing-remitting or RRMS). Current research indicates:

“Most people who are diagnosed with RRMS will eventually transition to a secondary progressive course in which there is a progressive worsening of neurologic function (accumulation of disability) over time.” 

That scares the hell out of me. So what should I do? Remain calm and live a healthy lifestyle. Now, more than ever, diet and exercise plays an important role in my life, one that my future depends on.

That is not only important for me but for YOU as well!

My advice to you is to look into long term care insurance today. Consult with a certified financial planner or a reliable insurance broker. I wish you good luck and good health on your journey. May we all live a long, happy and healthy life.

Here are a few links to help you learn more about long-term care insurance. Do yourself, and your loved ones, a favor and take a look at them:

Kiplinger: Options for Covering Long-Term Care Costs

Kiplinger: How to Buy Long-Term Care Insurance

Consumer Reports: Long-Term Care Insurance

Forbes: 10 Questions to Ask Before Buying Long-Term Care Insurance




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46 thoughts on “Why I Wake Up Worrying About The Future

  1. Helene Cohen Bludman

    I don’t blame you for worrying! Our healthcare system is unreliable and unpredictable. I worry too.

  2. Theresa Wiza

    I didn’t know insurance companies were still able to disqualify a potential member based on a pre-existing condition. Isn’t that against the law now? Anyway, as far as your question about worrying about the future is concerned, I think I may have mastered that problem. I just keep getting rid of more and more “stuff” and moving into smaller and smaller abodes, figuring out what I can afford and then trusting that all will work out.

    When I realized, after downsizing a year and a half ago, that I wouldn’t be able to afford this current place any longer and would have to look for something even more affordable, one of my daughters found out she was pregnant and asked me to move in with her and her husband to help out so she could return to work. It was a Godsend (a miracle actually), because I had already decided I had to move.

    Because of my recurring poverty-level income, I know I will end up in one of those dreaded places, though my kids refuse to allow me to live anywhere but with them. I, however, don’t want to burden them. I hope nursing homes in the future will be different than they are now, because what I noticed from my experience with my dad and former mother-in-law is pervasive sadness, not only because everybody who is in there knows they will die soon, but because they have no music. I know that probably seems like a weird solution to the sadness, but I honestly believe that if those nursing homes piped music into the rooms – music from the residents’ era, the residents might be happier.

    So I hope that when I get there I can convince the home to play The Beatles, Pink Floyd, Eric Clapton, The Moody Blues, … 😉

    I hope, for your sake, that you find the right answer.
    Theresa Wiza recently posted…How to Dissuade People from Reading Your BlogMy Profile

    1. Post author

      Thanks, Theresa. The cost of quality healthcare is astronomical. Life seems to always be about money and that is something many of us worry about. I wish the state of healthcare wasn’t so broken and that the country would finally put it at the forefront of what we need to re-do.

  3. Lisa Romeo

    Ugh. I have similar night worries. The prospects are dismal. While I don’t have MS, I’m guessing that the combination of many other conditions I do have wouldn’t bode well for my getting a policy either or at least not one that we could afford.
    I remember when my grandmother needed care (we’re talking about the late 1960s, early 70s), going with my mother to tour small “rest homes” — literally converted large houses– with only about 10 elderly residents, run by caring couples committed to providing a home-like atmosphere. Once corporate medicine got into the nursing home business, old people became commodities. As you say, we can only take care of ourselves, hope for the best — and vote for leaders who care to effect change.
    Lisa Romeo recently posted…From Lemons to Lemonade, with Writing, Loss, and a Speeding Car in BetweenMy Profile

    1. Post author

      How I wish our system was like the one that was around for your grandmother, Lisa. But you and I will have problems finding LTC, only I hope you can find one that considers your issues not as much of a risk as mine. Then there’s the expense….grr.

      BTW, my financial advisor was an MHS grad and the nursing home I spoke of? The one on the north end of CG on Rt 23 (can’t remember the name….)

      Thanks for sharing your thoughts. Here’s to living a long and HEALTHY life, my friend. recently posted…Why I Wake Up Worrying About The FutureMy Profile

  4. Joan Stommen

    Oh dear Cathy….you will have all of us circling the wagons, surrounding your with love and care if you ever find yourself in one of these awful places. I saw them we we searched for a place for my Mom; took all of her money…but she was accepted into a “high end” place! It was so worth it! I’m glad I’ve kept my LTC policy going all these years…you are right to encourage others. And you have every right to be scared and angry! I hope you and other advocates to make a change sooner rather than later! Well done! Sleep well tonight, my friend.

  5. Laurie@Musings, Rants & Scribbles

    Cathy, I’m close to two people with MS. I know the challenges that come with this illness. You’re a brave woman with valid concerns. I wish I had sage words of advice except just do your best each day to make yourself happy. Funny, how many times it boils down to little things. Wonderful post. Thank you.
    Laurie@Musings, Rants & Scribbles recently posted…Can Life Begin Again at 80?My Profile

  6. Anna Palmer

    I agree that this is horrifying. Insurance is the worst industry (in my opinion) every time I make a claim on any policy I get dropped. So the only way I can have insurance is by never using it. I will look into LTC insurance this week. But maybe I won’t complain about it because I am lucky enough to be able to have it. I am so sorry that you have to go through this. Despite your worries I bet there will always be someone there to wipe your drool.
    Anna Palmer recently posted…Taste the Rainbow.My Profile

  7. Haralee

    There are so many things to consider with health issues and living to old age that it is a wonder we don’t all have nightmares!
    My Mother had long term care and we exhausted it with her care. She was in an assisted living facility then on their memory floor and then in their nursing home. She went through all her money and on to Medicaid. The good news was the facility is wonderful, they accept
    Medicaid and first space slots are given to their residents in their other facilities like my Mom.
    Haralee recently posted…The Waning Sex Appeal of Home OwnershipMy Profile

  8. 1010ParkPlace

    First of all, sweet friend… No shame on you! It’s difficult for you and me to visit care facilities, much less when you were a child.

    My mother paid into LTC most of her adult life, but wasn’t able to use it because she was never in a “nursing facility,” which is what her LTC covered. I now understand there are better policies.

    I understand your horror. Having had breast cancer eliminates me from a number of insurance/care options. It is a broken system because so many of us who reach the age of needing that kind of care have a pre-existing condition… Not good.

  9. Stacia Friedman

    Have you spoken with Friends Life Care, the Quaker organization? They might be more flexible. However, even if they aren’t, do not panic. After caring for a mother with dementia in upscale assisted living, nursing home and hospice care for 7 years, I realized that long term care will not give me the quality of life I want – no matter how much I am willing to spend. There are other alternatives.

    In Philadelphia, where I live, we have Philadelphia Corporation for Aging which provides comprehensive services for seniors who choose “age in place.” Even though you don’t live in Philly, contact them to find out which agencies provide the same services in your area. Also, talk to a Geriatric physician.

    1. Post author

      Thank you, Stacia. I never heard of Friends Life Care but it’s certainly worth a try. Thank you for all the information you provided. I am keenly aware of a lot of information re: LTC but it’s always, always nice to get other opinions and resources. I thank you for providing some more.

      Thanks again, Cathy

  10. janet tancredi

    Cathy, I am fully aware that there is no way you can respond to all the responses you must receive! I just have to reply. Almost all the blogs you post, are so identifiable! It is so amazing to me, that there is someone else out there, that shares almost the exact same issues that I do! It gives me such comfort to know that I’m not alone. Thank you for being able to put your feelings into words. HAPPY MOTHER’S DAY! Janet Tancredi

  11. Terry Palardy

    Cathy, I learned years ago that no LTC would accept someone with a diagnosis, even a pending diagnosis, of MS. This was long before President Obama … long before my ‘medically-induced retirement’ … It was while we were taking care of my parents and his parents and our young son … the true sandwich generation conundrum. Their blatant refusal to consider my ongoing healthy lifestyle left a bitter taste in my mouth.
    I believe the best way to stay healthy and active is to BE healthy and active… in spite of MS. I move more slowly now (or else I fall, believe me) but I continue to move. I opened a fabric store when I lost my classrooms and colleagues, and I now have compassionate friends who share my interests and join me in making charity quilts. I’m writing a forward-looking mystery series that features my husband and I fifteen years in the future, in our eighties, and still running our fabric and wooden toy shops … I refuse to be told that I can’t. I will continue to believe I can! And I and my husband will age in place as long as we are together, and if a time comes when we are then only one, I believe it will be a humanely brief time.
    Terry Palardy recently posted…More shelves, more fabrics, more kits …My Profile

  12. Alana

    My spouse can not get long term care insurance, either (due to a different health condition) and it is important to note (not that I am an expert in this field) that the law provisions dealing with pre existing conditions DO NOT extend to long term care insurance. In fact, what we found is, it is so expensive for so many people, that many can not afford it, period. And then what? I am scared for the future, too. My childhood best friend, a cancer survivor, was able to obtain LTC and, when she got a different cancer, it was there for her (sadly, she didn’t survive her 2nd cancer). Her younger sister has MS. Our system is past broken. Past, past, broken. (And P.S. your brownie leader should have prepared you and your fellow Brownies for what you were going to be exposed to, in my humble opinion.)
    Alana recently posted…Throwback Wednesday – The Ugly Stepsister of CancerMy Profile

  13. Beth Havey

    Hi Cathy,
    In my family, my mother worked in the insurance business and so did my husband. My mother and my aunt BOTH had LTC. I also have a LTC policy. I think losing a father early in my life helped make ALL of us aware that death happens and illness can be sudden and you need insurance. My mother wouldn’t let John and I marry and go on a honeymoon until we had life insurance. At least something to cover us if we were in an accident and paralyzed or something. The one thing I will say about insurance and the government is that we as individuals are responsible for researching and discovering how we can help ourselves. It’s easy to blame the system when amazingly there might just be something out there that can help. The ACA has helped people with pre-existing conditions. But big business still wants to make money. We are half in and half out. Maybe someday we will have a system that is single payer and can help everyone. Great post. Hope those dreams go away. Beth
    Beth Havey recently posted…Breaking Into The ConversationMy Profile

    1. Post author

      Smart mama you have!

      I hope someday we not only have health insurance allowing pre-existing conditions but also LTC and all insurance plsnd to cover everyone with all conditions. Utopia? Yes. Expensive? Quite. But I think we need to put citizens first before big business. Thanks for sharing your story, Beth. It is greatly appreciated.

  14. Danie Botha

    “… So what should I do? Remain calm and live a healthy lifestyle. Now, more than ever, diet and exercise play an important role in my life, one that my future depends on …”
    Yes and no, Cathy.
    RRMS: It is no joke and not easy. (I say this as a friend and as a physician.)
    The reluctance to “fix” or “heal” healthcare north and south of the border is alarming.
    Here’s my take:
    1. Diet & exercise = crucial. Look into complex exercises, such as Salsa dancing. Regular. Rest periods NB.
    2. LTC – take the Nat MS society to task. Organize. Do your research. You already have a voice. Don’t back down. Network even wider. And wider.
    3. As soon as I’m done with this comment I’ll send a couple tweets and see if we can work up a storm/or awareness about LTC for MS, to name one.
    You are a very brave lady. We salute you.
    Do not give up.
    We receive grace, one day at a time-guaranteed.
    Thank you for making us aware of the plight of many patients, Cathy!

  15. Cathy Lawdanski

    This has been on my “list” for over a year & keeps getting put off. I have also witnesses the cost of care needed for people as they age. Getting on that today!

  16. Pat

    Oh Cathy, maybe we should call each other when we wake up with those nightmares, I too, worry about how I will cover care taking if my chronic illness progresses. Insurances won’t cover me very well due to pre existing conditions. As much as we try to live in the moment, we know better than most how a bad day is just around the corner. Don’t you wish we could trust our bodies?

  17. Kit Minden

    My father’s long term care policy was useful. You and I are blessed to have such strong sons who will not let us be without support. Such a blessing is a miracle!

  18. Graham Forbes

    Thank you for the opportunity you provide for people to share their fears. Ageing is an uncertain territory, but there is much we can do to reduce our own risks of health crisis.
    I pay very careful attention to my health and fitness because I have a younger wife who has a terminal cancer, and I need to be around to help her, and our son.

    We all need to be responsible for our ageing process.
    Graham Forbes recently posted…Fit not Fat – the Boomer Challenge!My Profile

  19. Samantha Stein

    This is exactly why Americans are encouraged to buy long term care insurance early. They can avail of health discounts and avoid being turned down by companies because of their pre-existing conditions. The problem is here lack of information, unpreparedness and the thought that long term care issues can be resolved by families. I feel bad that you are worrying and everyone is also showing big concerns about their future. I just hope our long term care system will improve and for people to be more responsible about their future. Early long term care planning is definitely the key plus consultation with a long term care insurance specialist. Thanks for this, Cathy, definitely an eye-opener.
    Samantha Stein recently posted…Long Term Care Planning Series: Security for The Sandwich GenerationMy Profile

    1. Post author

      Thank you for sharing your thoughts here, Samantha. I would love to have LTC. I’ve looked into it myself on numerous occasions, and I’ve also met with a financial planner who specializes in insurance. No LTC company will insure anyone living with Multiple Sclerosis. It is one of the illnesses on their list of diseases they will never insure. I am in my fifties, so I’m not old and was ready to plan for my future. Should I have looked in my 20’s or 30’s? Yes. But I still had MS.

      Another factor is the expense. LTC is very costly and many people, particularly the disability community who are already paying out-of-pocket expenses for medications, doctor appointments, hospital stays etc., can ill afford the extremely costly premiums.

      If you have suggestions please let us know. In the meantime we are uninsurable for LTC. Unfortunately we do have plenty to sorry about. But I thank you for your comments and concerns. Much appreciated.


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