Introduction to 7 Actions to Take to Stay OUT of a Nursing Home

Introduction: Reasons to read this book

Do not spend the last year of your life in a nursing home. Too often people assume that nursing homes are inevitable. No! Too often people assume that paid and family caregivers will help you stay at home. Really?

I don’t want to spend the last year of my life in a nursing home. You don’t want to spend the last year of your life in a nursing home, and I don’t want you to either. Reading this book will decrease your risk significantly.

Getting old sneaks up on you. Even as a Ph.D. gerontologist writing and teaching about aging and having done research on long-term care, I am surprised at what is happening to me in my 70s. The people I love the most die. Even with two new hips I am not nearly as fast, as flexible, and as active as I was even just ten years ago. “Just”—did I ever think I would call ten years ago, “just” ten years ago?

This is not a book that is anti-aging or ageist. You cannot, nor should you want to prevent aging. You want to be healthy, attractive, and smart at whatever age you are.

You don’t want people to be ageist. If that word does not provoke dismay in you, think of how odious are the clichés, negative stereotypes and bigotry of people who are sexist or racist. Those are despicable.  Just like sexism and racism, ageism is awful. It’s inspires self-loathing, limits potential and opportunities, and is just plain wrong. Ageism may itself play into the existence of nursing homes and the unlovely lives that people live in them.

There often is a societal culture of discounting old people. Believe me, it’s much more difficult for a single gray-haired woman to promptly get a nice table at a restaurant than it is for an attractive 25-year-old. If a 20-somehing person has a severe disability and cannot care for him or herself, it is much less likely he or she will be placed in a nursing home than an eighty-year-old. The first is a minor lament; the second is grossly discriminatory. The 87-year-old wants to stay out of a nuring home just as much as the 27-year-old.

 

So this book is about factors that promote staying out of nursing homes.

 

How to read this book

You need not read these chapters in the order they are written. You may already be an expert on end-of-life planning, estates, and finances. (However, even as an expert, you still may learn something new—or tell me about important facts omitted or update information in this fast-changing world.)

Some factors that contribute to staying out of a nursing home, such as exercise and a healthy lifestyle, are well established. However, are you really practicing a healthy lifestyle?  There are tricks you may not know for acquiring healthier habits. This is more important than ever because we continue to learn more about dementia and how a healthy lifestyle, particularly exercise, can lower your risk of Alzheimer’s disease. Other topics, such as in Chapter One, rarely occur to people until it is too late.

 

I’m not asserting that all nursing homes are bad. After spending hundreds of hours interviewing hundreds of people in dozens of nursing homes, I know there are fine skilled-care facilities with kind and well-trained staff. But even in these well-run and well-designed places, most people don’t want to live there, especially for over a year.

So read this book in any order you please but please learn what you can in order to lessen the risk of spending the last year of your life in a nursing home.

 

Chapter One: How can UD keep you out of a nursing home?

How to Hire Help

If you decide to make your home or apartment friendlier for aging in place, how much will it cost and who will help you do to do the work? Additionally, if you choose to move, there are typically a large number of major and minor upgrades required to prepare a house for the market.

Even the most capable do-it-yourselfer slows down with age. Protect your back by not doing it all yourself, and protect your budget by being extremely selective.  Happily there are many resources via your keyboard. If you are not a fan of computers, your local library can help you conduct an electronic search.

I recommend trying to find an “Aging in Place Specialist”.  In my small community, when I went to the Certified Aging in Place Specialistsite of the National Association of Homebuilders, more then 30 popped up, mostly architects and contractors.

Of course some were not what I was looking for, such as a reverse mortgage advocate. At the present time, reverse mortgages need to be considered very carefully. Also listed were some individuals with a poor reputation in my community. Others listed had no information at all.

Select three contractors and obtain at least three references for each. This means a minimum of 9 phone calls, but that’s cheaper than a botched job or an overpriced remodel.

I would also look up the Northwest Universal Design Council website for ideas https://www.environmentsforall.org/home-checklist/. Their home checklist is particularly useful. Other urban centers probably also have similar organizations.

I suggest that any person you hire be licensed, insured, and bonded. While we have had some luck with sub rosa (under the table) handypersons, those who operate without credentials, we have also had some bad luck. Caveat emptor—buyer beware!

The same goes for plumbers and electricians, although you may not have the leisure in a time of need to get numerous referrals and recommendations. Learn a bit about plumbing yourself. Anyone can plunge a toilet if he or she knows how.

 

I recommend having a housecleaner well in advance of when it becomes a necessity if you can possibly afford it. When I had unexpected hip replacement, I was so relieved to have a trusted, competent, and even beloved person to do the essential cleaning. Many women think it self-indulgent to have a cleaner or are convinced that someone else wouldn’t do nearly as good a job as they do themselves.  First of all, I consider it an equity issue. Some men, it appears to me, have never scrubbed a bathroom. Why should I be the only one cleans the commode? But more important, as we age, there will be certain tasks that are too difficult or too risky for a frail older person. Hiring a helper in advance of necessity precludes hiring a person you don’t know in a time of great stress and great need, such as when you are in the hospital about to be discharged. It also precludes dusting that top shelf, falling, and ending up in the hospital. Admit it in advance that there willbe a time when you will be hospitalized and then discharged and will need help at home.

Prilosec Killed My Husband

Prilosec killed my husband  (not taking it can also be perilous)

Jeannette Franks, PHD January 2019

Recent studies suggest that if my beloved husband had not taken Prilosec, a PPI, he would be alive today. PPIs are a class of drugs called proton-pump inhibitors. These medicines block production of stomach acid. Long-time use of PPIs also interferes with the body’s ability to absorb calcium, which can lead to osteopenia, especially in women and older people. Osteopenia is a precursor of osteoporosis, devastating thinning of bones.

Osteoporosis is difficult to treat and irreversible. Although there are medications that slow the process, those medications have negative side effects and do not produce the quality of bone one would want.

Thinning of the bones after age 70 is a risk factor for fractures, hospitalization, and premature death. Yet if you read the precautions on a Prilosec label,  it says nothing about thinning of the bones. And how many people actually read the fine print? It does admonish users to take only one a day for 14 days, and not to repeat until 40 days have passed, but it does not even hint why. I think it should say DANGER BONE THINNING in huge red letters.

When my late husband learned about the serious negative side effects and his low bone density, he tried to quit the PPI. However, the rebound effect was very painful, so he upped his weight-bearing exercise, calcium and vitamin D. Yet when he had what for many of us would have been a minor fall, so many bones broke that he was in ICU at Harborview for 10 days before he died. The pain was enormous and with the addition of pain medications, intubation, dialysis, and feeding tube, his condition consistently worsened.

While this is by no means a scientific treatise, I just want more people to know the risks of PPIs. Perhaps you or someone you love can avoid a painful and premature death. But you may also need to take a PPI for certain forms of cancer and other diseases. There are always tradeoffs for taking or not taking drugs.

 

Notes from a new widow

You will never be prepared enough. Although I taught a continuing education course on Grief and Loss for over 15 years for the UW School of Social Work, there were unexpected issues after the devastating loss of my beloved husband.

When I called my lawyer, a respected colleague, I was surprised when she said, “Don’t tell the bank yet.” Indeed she was correct. My husband and I always had three expenditure accounts: his, hers, and ours. One of the credit cards was in his name only. It had been used for an expensive trip that had to be cancelled. It will now be more complicated to receive the numerous refunds from hotels, airlines, and rental car. Put everything in both your names.

You must of course promptly notify Social Security, 800-772-1213. You can speak to a Social Security representative between 7 a.m. and 7 p.m. Monday through Friday. Generally, you’ll have a shorter wait time if you call during the week after Tuesday. They notify Medicare.

Keep in mind that you must then also notify any other health care programs such as the Medicare supplement and drug insurance. I called the prescription provider promptly. Nevertheless they mailed out a $500 prescription after they had been notified of his death. They were kind enough to refund the money but it was an added pain.

Make absolutely certain that the hospital understands your documented end-of-life preferences. These are obviously painful and complicated issues. For example, my husband had a pacemaker/defibrillator. Therefore he was DNR. That literally means do not use cardiopulmonary resuscitation. CPR would not work with a pacemaker. It does not mean comfort care only.

We still wanted broken bones to be mended, fluids and medications maintained, and more. However, when his situation slowly worsened over 10 days, the hospital kept adding interventions such as dialysis, intubation on a ventilator, a feeding tube. His potential for recovery became dimmer and dimmer. Even though I had durable power of attorney for health care and wanted to involve hospice, they refused. “We don’t do hospice here.”

I finally had to bring in a “Values Worksheet” our lawyer had given us. It clearly stated that he did not want extraordinary interventions such as permanent intubation, continuing dialysis, tube feeding.

My heart is breaking writing all this. My last piece of advice in this article is sign up for People’s Memorial. The web site for Washington State is https://peoplesmemorial.org. They can refer you other organizations in your area. They were wonderful. It is a non-profit co-operative, providing education and affordable cremations, burials, and green funerals. There is a one-time $50 fee and we were long-time members. One of the most difficult aspects of saying goodbye was made smooth and easy and cost less than $1000. My husband was always thrifty, and I respect that. Death is not cheap. Or easy.IMG_2861

Mom always was a worrier

 

Many psychologists write about the five stabile personality traits and one of them is neuroticism. Those who are anxious, depressed, self-conscious, impulsive, vulnerable and/or perhaps hostile may fall into this category. The bad news: this characteristic appears to remain stabile with age. If mom always was a worrier, she most likely still is. Is there good news? I don’t know, but in my opinion here are some good and bad ideas.

It may be that age logically exacerbates worrying. After all, if mom always feared that “something bad is going to happen”, guess what? As we near the end of life, many bad things aregoing to happen, ending eventually and inevitably with death.

My philosophy is to avoid unnecessary pain and suffering and to avoid premature death. That’s another article.

To mitigate mom’s worrying, there may be some solutions that mom and her family think might work.

For example, a Continuing Care Retirement Community may be thought to relieve the worry of “being a burden to the family.” A long-term care insurance policy might alleviate the worry of paying for home care or a nursing home. Safety improvements in the home can lessen the risk of falls and fractures. In my opinion the first two are not particularly good options for many people.

For one thing a Continuing Care Retirement Community (CCRC) will always be expensive and you are making a life-long commitment. What if you don’t like it? I’ve known people who paid an enormous entrance fee, only to discover that the age-segregated lifestyle was not to their liking. Or that wine was not allowed at dinner. Or almost everyone didhave wine with dinner. Moving out can entail sacrificing a large part of the entrance fee.

Review the contract thoroughly. It is a legal agreement. Does the community have the right to determine your needed “level of care”?

My beloved mother-in-law moved to a CCRC in order to not be a burden to her only child. When she broke her hip and it was not healing, she was moved from her lovely view apartment to a windowless assisted living unit. Then when she broke her otherhip, she ended up in the nursing home. Although this was a state-of-the-art, newly built long-term care facility, it was clearly a nursing hone and she hated it.

Every other month we flew from one end of the country to the other, round-trip, for over a year, to be with her. Many family members would view that as a burden.

Moving into a CCRC is not the answer for everyone.

Now, about long-term care (LTC) insurance. Every insurance salesman in the country will assure you that it saves money in the long run. No it doesn’t. Not for everyone.

Insurance is shared risk. You are sharing the risk of moving into a nursing home. This is a perfect risk to share, if like car insurance, everyone must buy into it. That lowers the cost. But at the present time only a small percentage of the population buys in, primarily those who can afford it and feel that they have a high risk of needing a nursing home.

Again, check the policy thoroughly. It is a legal contract. Does it cover home care? For many, that is a more desirable option. It can even be cost effective.

Are you at risk of needing long-term care? Who knows? But currently less than 5% of the population 65 and over are in a nursing home. Many of the oldest old, those most likely to need LTC, are in alternative settings such as assisted living, adult family homes, or at home with home care. Does the policy cover those?

Who determines your need? All LTC insurance policies have gatekeepers. Nurses or some type of professional who, based on your activities of daily living such as your ability to bathe, dress, eat and walk around, determine whether or not you are sufficiently disabled to trigger the use of your insurance. And typically it covers only part of the cost. And typically you must be quite disabled to qualify.

One change that can actually lessen the risk that “something bad might happen” is Universal Design. Universal Design is usually defined as the design of products and environments to be usable by all people, to the greatest extent. Wikipedia has a useful summary https://en.wikipedia.org/wiki/Universal_design. A trend today is Design for All (DfL), where the activity is facilitated, whether or not there is a disability. An example would be doors that open automatically when a person is present.

Back to mom being a worrier:

What about therapy? Great idea!! Years of research on people of all ages indicate that talk therapy and medication therapy for anxiety, depression, impulsivity, and hostility do both work. The combination of the two works the best. But be cautious with medications. As we age we become more sensitive to drugs, including Seattle’s drug of choice, caffeine. And of course our tolerance for alcohol decreases with age, making it more dangerous for older people to drive, even with alcohol intake below the legal limit. Now there’s something for mom to worry about!

Next Weed Warrior Event is at a designated dementia care community, May 17, 1 to 3.

Can We Wear 2 Hats?

Most of us wear 2 or more hats. Join Weed Warrior/Gerontologist Jeannette as we battle ivy at Madrona House, 8800 Madison Ave NE (or as most of us say, right by the Baptist Church), Thursday, May 17 from 1 to 3.

Revered dementia specialist Teepa Snow recently led staff training at Madrona House. A respectful, interactive approach helps residents function more fully and with greater joy.

A more harmonious environment of native plants helps us all enjoy the outdoors more fully. Contact: jfranks1@comcast.net206-755-8461.

Other upcoming invasive plant removal events:

BI Land Trust 1stWednesday, 10 to noon: contact Sinclair at Sinclair@bi-landtrust.org  https://www.bi-landtrust.org/get-involved/

BI Parks & Rec: Waypoint Park just north of the ferry ticket Kiosk, 2:00-4:00pm, 3rd Tuesday of each month. The garden at Waypoint Park is one of the first sites for visitors to Bainbridge Island. Help us maintain its beauty as a symbol for the rest of our island. Contact: emilyh@biaprks.org  https://biparks.org/volunteers/

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Our Oyster event was a marvelous party—you should have been there! Betsy Peabody of the Puget Sound Restoration Fund went on to the Hama Hama Oyster Rama. That same week she appeared on 60 Minutes https://www.cbsnews.com/news/seaweed-farming-and-its-surprising-benefits/and in the Seattle Times magazine. Thank you Betsy for your generosity, hard work, and fame for an important cause! Let’s do it again next spring😀

Free Oyster Tasting April 20

April is Earth Month!! Listen to my (almost) thrilling podcast 

Join Weed Warriors at a FREE Oyster Slurp on Friday, April 20, 5:30 at Seabold Hall. Although free, we must limit this event to 80, so please register at Brown Paper Tickets https://www.brownpapertickets.com/event/3365879

This event is hosted by Weed Warriors andIMG_6770.jpgSustainable Bainbridge in partnership with the Puget Sound Restoration Fund. They are contributing the oysters, which will be harvested that morning at Pt. Madison.

Visit the Earth Month Calendar of events at http://www.sustainablebainbridge.org/earth-day-.aspx

Earth Day itself is April 22 and Weed Warriors will be at Blakely Park on Bainbridge Island, 10 to noon. Bring tools and gloves if you have them, but we have extras if you do not. For more information: emilyh@biparks.org

 

I wear 2 hats

IMG_1477Most of you know that I am your friendly neighborhood gerontologist, specializing in aging in place, independent living, and accessibility.

I also have coordinated Weed Warriors for more than 16 years. We do environmental restoration by pulling invasive weeds and planting natives. To help save trees and forests is to help save the planet.

Weed Warriors are a volunteer coalition of amateur and professional gardeners and environmental activists serving various organizations including but not limited to (in no particular order) IslandWood, Sustainable Bainbridge, BI Land Trust, City of Bainbridge Island, BI Parks Foundation, BI Parks & Rec, BI Watershed Council, Association of Bainbridge Communities, schools, service groups, and Kitsap Weed Board. Weed Warriors’ goal is to participate in at least one action and/or educational event a month focused on removal of noxious weeds and restoration of native plants. Weed Warriors is a 501c3 through Sustainable Bainbridge.

OUR NEXT EVENT is Sat. Dec. 16, from 1 to 3 at Way Point Woods on Bainbridge Island. This is an easy walk from the ferry or from T&C. Just take the very first left turn off the ferry and turn left, if by ferry. Or from Winslow, take the left from the Waterfront Trail just past the bridge.

Hospice is especially hard during the holidays

Hospice During the Holidays

Many of the huge and multiple challenges facing friends and family when someone is in hospice become larger during the holidays. Whether it’s Christmas or Passover, or a host of other gatherings intended to be celebratory, being with family and friends is even more difficult when someone is dying during special times. Thinking and planning in advance can help.

Humans are flawed and families are collections of humans, often with much more in common than just shared genes. Family gatherings can ignite conflict; the larger the gathering the greater the potential for flare-ups.

I come from a long line of bossy women. Get two of us in the same room at the same time and sometimes sparks will fly!

But understanding this in advance is a wonderful prevention. By this I mean if you recognize the possibility of a flare-up, you can minimize the flames.

The mix of old age, dementia, past history and a person at the end of life make family gatherings terribly difficult. Many issues are, at core, control issues. Relinquish control as often as possible. Even folks with Alzheimer’s are entitled to choices—even bad choices.

Especially during times that are supposed to be festive and harmonious, let grandpa have pie, even with his diabetes. (Perhaps bring a sugarless one!) Hide the alcohol and make everyone go without, if one person is at risk of a making major scene if unlimited alcohol is available. Refrain from forcing grandma to wear what you think are appropriate clothes; after all, it really doesn’t matter.

Check in with yourself as to what is important and what is not. For an old person near the end of life, the pleasures from dessert or wine or a summer gown on a winter night offset any risks. This is true regardless of age.

I remember a man in hospice who wanted one last beer (or probably a sip) before he died. The hospice nurse denied him “because he’s on morphine.” There is no reason in the world why a dying person on morphine cannot have a beer. Or snuggle in bed with a loved person. Or smoke a cigarette.

Keep the conversation pleasant. It is easy to switch the tone of a conversation, especially if the person has dementia. When grandma wants to know where her husband who died last year is, ask her “how did you meet granddad?”

If a person is disagreeing with you, accept it gracefully. If dad brings up that awful car wreck that was your brother’s fault, change the subject to an enjoyable one. “What was your favorite car?” This is not the time to disagree or drag up old disasters. Indeed there are very few times when it is actually productive to do so.

It is axiomatic in schools of social work that all families are dysfunctional—it’s just a matter of degree and coping skills. At first I was unwilling to agree with this pessimistic assessment, but over the years I have come to concur.

At my family reunions we explicitly do not discuss politics, religion, or home schooling. Everything else is fair game to talk about—including sex and drugs! The important topics are love, history, and shared lives.