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My Own Heart Wrenching Encounter with Eldercare: Would you rather grow old in the US or in Sweden?

My father had a serious stroke this Spring and I was suddenly thrown into the midst of having to make important long-distance decisions with my siblings about my parents, who live in a little fishing village in Sweden. At the time of the stroke I was living in the US, my younger brother in Mexico and my older brother in Sweden, though a good 7-hour drive away from my parents. It could have been worse. A few years ago we all lived outside of Scandinavia. I think caring for your parents must have been a lot easier 30 years ago before we became so darn’d global and mobile!!!

Shortly after the stroke, us siblings had almost daily phone conferences. I started having nightmares, waking up facing guilt and deciding and re-deciding every day when to go home and for how long. As it turned out, my older brother is the one that has shouldered the burden for the last several months and really the last several years after my parents health started going downhill pretty rapidly. What a journey it has been!!! An emotional roller coaster for sure, but also such an education about eldercare in Sweden and the sharp contrast to our experience with my husband Scott’s parents a few years back. And, though I love the US and obviously have chosen to live here (so please don’t go “defensive” on me), the prospect of growing old and frail here scares me to “death!” And, yes, I understand that the level of healthcare and eldercare you get in Sweden comes from their progressive tax structure and their single payer healthcare system, but as I grow older myself that is beginning to sound better and better.

My husband’s parents were hard-working professionals their whole life and raised a family of five kids. Scott’s dad at one time had a successful career as an aerospace engineer for a top company in southern California. Later on the whole family moved up into the mountains outside of Yosemite national park and built a beautiful house. They did all the normal things a typical family would do with respect to disability, insurance etc. Shortly after Scott’s mom turned 65 she contracted an unusual and serious disease which led to her death within a few years. It was with horror I watched my father-in-law decimate his savings, his beautiful house and literally everything he owned to provide quality care for his wife. He ultimately passed away destitute in a shabby mobile home.

Compare this experience to that of my parents. Both have in the course of the last couple of years suffered strokes and are not able to take care of themselves, both because of memory issues and physical challenges (my father is partially paralyzed). Both are still able to stay in their home of many years – together – and have caretakers and healthcare professionals coming in a minimum of six times per day and often in the middle of the night as well. All it takes for an out-of-schedule visit is for one of my parents to push the alarm button. They have staff help them with their most basic needs, they are brought hot food, groceries and everything else they need to live out their final days in harmony and with self-respect intact. Cost: a combined total of $700 per month. And, the cost and care is the same regardless of who you are and where you have come from!!! Imagine what the same level of care would cost here? I am simply awed by the Swedish eldercare system and how responsive the municipality has been to the needs and desires of my parents and their children.

In less than seven days I will be traveling to see my parents, a trip that could have been such a nightmare and burden, but something I can truly look forward to now. My mom and dad are happy and well cared for. They are in a familiar environment wt the views of Denmark across the sound that they have lived with their whole lives. Their kids are visiting on and off all Summer long. Yes, there will be many things to take care, but I can only imagine what it is like for all of those daughters and sons that are facing similar issues with parents here in the US, parents that are often not financially able to provide for their own care.

I realize how very fortunate I and my siblings are. We can focus on spending quality time with my parents, instead of spending the hundreds of hours my husband and his siblings had to spend fighting with the insurance company to try and help their parents get the healthcare they thought they had. Plus they actually had to shoulder the burden of much of the caretaking, while dealing with employers that do not understand and/or have inflexible workplace practices and skimpy leave policies, while feeling guilt about neglecting husbands and kids and so forth. Burnout!!!!!

This is a time for contemplation. I wonder what will happen to me and my husband in another 20 or 30 years if we end up with the same ailments as my parents. Hmmmmm….should we have had more kids…..not fair to become a burden on our one and only daughter. Hmmmmmm…….how could I possibly afford the level of care my folks are receiving here in the US? Will I end up in a second rate nursing home somewhere, or worse…..? Should I just throw myself off a mountain when the time comes? Sweden’s progressive taxation and healthcare system is beginning to sound pretty good….at least some aspects of it.

In sharing the events of the last few months with friends and colleagues, I have become aware of how many of us babyboomers are facing the issue of caring for elderly and ailing parents. As a business owner myself, I don’t have many of the workplace challenges so many of my friends have to deal with. My boss – “me” – is very flexible. I am giving myself three weeks this Summer and several weeks later this year to go share some quality time with my mom and dad. I can make emergency trips with relative ease and as many personal phone calls as I want during working hours. I am plain lucky!!!

I wonder how supportive companies here in the US are of employees having to deal with eldercare issues? Is it an an issue that has faded in importance???? Or not? It doesn’t seem I hear much about it nowadays compared to a few years ago. I decided to ask some of my clients that run human resources operations for companies small, medium and large here in the northwest what the lay of the land is. Find out in my next blog post what I found out.

In the meantime, I’d like to hear from you:

· What is your perception of eldercare trends in the US?

· Do you think eldercare is a critical issue for US employers to deal with?

· Do you think we need to provide better support for employees dealing with eldercare?

· Share your own eldercare experiences and stories, good and bad

· How much do you think it would cost here to care equivalent to what my parents are receiving? I am really curious.

· What do you think about how Sweden is handling eldercare?

8 comments

  • Juli Stevens says:

    Hi Suzanne, always nice to hear from you but I’m very sorry to hear of your parents health troubles and the anxiety you’ve been going through. And yes, you’ve managed to scare the crap out of me!

    I too have one darling daughter (who joyfully hangs the threat over my head of tossing me into a home at the first sign of dementia) so i’m inclined to join you on the mountain cliff!

    Funnily, I took a long-term care policy out on my Mom years ago but haven’t done anything about taking care of me! As the years go by I’m really glad I did this for my mom but I’m curious to see how it pays if and when that time comes.

    Take care Suzanne!
    Juli

  • Suzanne says:

    Juli:

    Great to hear from you. I have not done anything about a long-term disability policy either. I’d be curious how many folks actually have?

  • Ia Dubois says:

    Hi Suzanne,

    I am about to shut off the light but want to say that we are many in your boat. My mother is in the hospital since two weeks in Stockholm and they will have to redo her operation on Monday. I will leave on the 28th to help care for her and father who is getting senile far to fast it seems. Mother will have the same set up as your parents–6 visits per 24 hours including one at 03.30 in the morning–yes, bathroom time.

    My husbad and I had a long-term insurance after his father got Alzheimer’s and he wanted us protected should that happen to him also. It was $650/month on top of medical insurance so I had to get rid of it when he died. I have now told my kids that if I get very ill I will move back to Sweden before it gets too noticable so they will accept me back into the system. If I get senile I have asked them to “let me die” the day I don’t recognize them any longer–is it really me living then and why keep that different person going because the heart is pumping?!

    Those are my thougts as I get some rest before the next call to Sweden tomorrow morning. No, it isn’t easy to care for parents this way. But you are right, we are lucky who can travel back home to them periodically. I have been back three times this year already. Also I am blessed with a brother close by them and now it’s my turn to relieve him.

    For the US, we need a tax system that helps us create a social infrastructure that will provide enough health care so we don’t end up broke and on the street if our children, or we ourselves, get seriously ill. The bootstraps are not enough!

    Time to sleep. Nice talking to you. This is indeed a hot topic for us babyboomers.

    Big hugs,

    Ia

  • Kicki says:

    Hi,

    I have no experience as regards to getting old in the US; only what I read in the papers.

    However, as you state, you can get quite a lot of elder care “service” in Sweden. But the quality can vary tremendously. So if you ever think about getting old in Sweden, ensure that the place you have selected not only have good care but good management and staff, or it could be a really bad experience.

    When you are getting old some times it is not only the frequency of visits and care from staff that matters but how they treat you as a person.

    Kicki

  • Suzanne says:

    Sweden, Canada, Spain, Italy, Norway have single payer healthcare systems. Apparently Sweden pays half of what Americans do for healthcare. Essential care is typically provided very quickly, though I have read that some Swedes complain about having to wait for elective care and it is some times hard to find referrals to see doctors outside the region lived in. My personal experience with my folks’ care – including several serious healthcare issues such as cancer and strokes, has been overwhelmingly positive. What about all my friends and colleagues that still live in Sweden. Weigh in. Let us know what works adn what doesn’t! Here is a link to an article which nicely summarizes different healthcare systems in Europe and North America:

    http://seattletimes.nwsource.com/html/health/2009478895_healthworld16.html

  • Suzanne says:

    Scary things that Wendell Potter (former chief spokesperson for CIGNA)says about the insurance industry:

    “The thing they fear the most is a single-payer plan….they’ll pull out all the stops…to try to scare people into thinking that embracing a public health insurance option would lead down the slippery slope toward socialism.” (about the insurance industry)

    “I realized that someone’s premiums were….paying for my lunch on goldtrimmed china.”

    Potter says that if a person makes a major claim for coverage, the insurer will often scrutinize the person’s original application, looking for any error that would allow it to cancel the policy.

    “The insurance industry has hired scores and scores of lobbyists, many of whom have worked for members of Congress, and some who are former members of Congress.

    According to the Washington Post, the insurance industry and other healthcare interests spend up to $1.4 million per day to sway Congress and public opinion in the health care debate.

    A bit scary……

  • Steven Losleben says:

    Hi Suzanne-
    Travel safe to Sweden, we have talked about our shared issues with elderly parents. With Bev’s parents we have been fortunate that they purchased Long Term Care prior to the decline in their health. Not cheap but will pay up to $3,000 per month for in home assisted care or 24 hour care for five years. My thoughts are that the USA needs some level of basic health care plan for all citizens, especially wellness and preventitive, and then let the Insurance Companys offer plans for the elective and higher level services. Not sure what the answer is to pay for this level of coverage and our govt certainly has not demonsrated a historical ability to administer such programs efficently.

  • Suzanne:
    I have a client in the Twin Cities (DARTS, a non-profit) that provides elder care “lunch and learns” for companies. They were just nationally recognized for their Workplace Elder Care Seminars by the National Alliance for Caregiving. Their focus is on helping the caregivers cope with all of the challenges you outlined in your blog posting. Our challenge in Human Resources is to find affordable, practical, accessible resources to assist employees with elder care issues, as well as to contact our elected officials to raise awareness. I’m also convinced that a significant percentage of intermittent leaves under the Family and Medical Leave Act are related to dealing with elder care issues. If HR can help employees better cope with the challenge of caring for elderly parents, then it’s possible that the need to access FMLA would diminish.

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