Finding a Place for Mom (or Dad)

This month hundreds of thousands of American families will face the decision about where mom (or dad) should live. The time will have come that mom or dad cannot live alone safely. And woe is the family member who has to deliver that message.

In the best case scenario, the decision can be a mutual one, or at least planned for. In worst case scenarios, the decision has to be made while mom is in the hospital and the family feels rushed to wade through all the options and financial implications of moving a parent to another place.

This week yet another of my friends had to face this decision with her mom, and it reminded me how much we don't know until we actually have to do it. So this blog is meant to share some facts and resources, and I invite all commenters to do the same.

1. Financial issues -- if your parents have been living in their own homes, there will be a tough decision about if and when to sell the house. In this market, selling is not easy. The choice might be to get outside help into the house until the market gets better, but outside assistance is not paid for by most insurance companies and certainly not by Medicare, especially if it is simply help bathing, dressing, taking medications, etc. All those "activities of daily living" were considered "social" not "medical" when Medicare was passed in the 1960s, and not much has changed since then. So your choice will be whether or not you can afford to keep your parent at home with some help or need to find another place for them to live and be cared for.

2. Facility choices -- there are a bewildering amount of choices and names for places. You can usually get some help by contacting your local Area Agency on Aging or asking the hospital's social worker for help or checking out "A Place for Mom.". , a free elder care referral service. Almost all non-hospital settings have limited Medicare coverage, something that comes as a shock to most people. Medicare will cover about 30 days of rehabilitation care after an acute episode, like a stroke, but after that, the coverage pretty much runs dry.

Independent living means an apartment with meals served in a common dining room. Laundry, room cleaning, activities, etc. are part of the price, and the occasional delivery of meals to the room if the resident is ill. But independent living requires that the person be able to manage their daily life pretty much on their own.

Assisted living includes the room and meals plus -- help bathing, getting dressed, taking medications, etc. AL facilities often allow residents to buy more services from a menu, with each things costing a separate amount. Pushing a wheelchair to the dining room costs $5, etc. You should be able to google AL facilities in your state, but here is a great site for California.

The cost of assisted living varies tremendously from state to state. If you live in California, it ranges from $3000 to $5000 a month for a one bedroom apartment with 2 or 3 meals a day and the opportunity to "buy up" some additional help. The more assistance that is required, the more expensive it can be. Other states can be much cheaper, but if the older person is mainly living on social security, it can be a tight squeeze.

Residential care is sometimes a separate license in some states and offers a little more help than Assisted Living but not as much as a nursing home.

Dementia care is a separate category of its own. Often AL facilities will have a wing for dementia/alzheimers residents. It is the most expensive and the decision that the parent is ready for that is one of the most difficult for a family to make.

Nursing home care (skilled nursing) means just that -- that the person requires some type of medical or nursing assistance for intravenous feeding, oxygen, daily injections, etc. It is as or more expensive than dementia care and again, as in all of these options, it is not covered by insurance unless it's for rehab for 30 days or you have a long term care insurance policy for the person.

3. Care in the home -- After checking out a lot of these places, you may decide to try to keep mom or dad at home. If you put "home care" into google you get this bewildering array of choices. At this point, it is best to ask friends and neighbors for recommendations or the hospital social worker. Allowing people into the home requires that they be checked thoroughly and trained. You don't want to trust just anyone to come in and care for your parent. There are some pretty awful stories about bad choices in this regard. Nevertheless, if you can afford to do it (salaries for trained home care workers range from $15 to 20 an hour -- do the math), it may be the best choice for your parent.

4. End of life care -- too bad it's become a dirty word. Hospice does an amazing job working with people who are either very close to dying or in some cases not that close but have requested "palliative" care -- care that will make them comfortable as they decline but not be invasive. My own mother is on hospice and we could not be happier with the treatment and care she is receiving. Most places do not have an inpatient hospice, so the hospice staff come to the facility or the home, usually 2 or 3 times a week. Hospice is not a substitute for full time care, but it does allow the person to make their own decisions about what kind of treatment they want and need, and as a person ages, the ability to make this type of decisions becomes even more important. So much control is take away from elders. Giving them back as much as possible is critical to their mental health.

If you are facing or have faced these decisions with your parents, please share your experiences and what you have learned. As we all age, the decisions will become ours as well. Best to be prepared.

Comments

[sabercat78]

Linda, thank you so much for writing about a subject that is near and dear to my heart. After helping my grandparents through end of life issues, I made a career change into non-profit senior healthcare. I work for the local PACE provider (Program of All-inclusive Care for the Elderly) in Oakland California. There are over 60 PACE providers across the country and it is truly an amazing program. It is the newest Medicare benefit (first permanent one since Hospice) and it uses a coordinated care model to provide high risk seniors with all (yes ALL) the care they need to stay living at home rather than moving to a nursing home. It is a caregiver’s dream. A team made up of physicians, nurses, rehabilitative therapists (OT/PT/Speech), nutritionists, social workers, pharmacists, activity therapists and even transportation drivers all meet daily to coordinate care. It’s the true medical home people have been talking about.

Your readers can find out about it at the national website www.pace4you.org

[Hospice Guy]

Thank you for your positive comments and endorsement of hospice care. My company, Transcend Hospice Marketing Group, works with numerous hospice organizations across the country and our research typically shows that the public has many misperceptions that become obstacles to people seeking hospice care when they should. Common misperceptions include that hospice is only for cancer patients, it's for the "very end" and that it's a place to go to die. The truth is that hospice is for any terminal illness with a prognosis of six months or less (and the sooner patients engage with the program, the more beneficial it is), and that hospice provides an entire range of services that are brought to the patient's home. As your blog post pointed out, which services are received is up to the patient and family to decide. And those services are delivered by devoted hospice workers with the utmost dignity, respect and professionalism. What's more, the cost of hospice care is typically covered in full by Medicare, Medicaid or private insurance. In a world of health care options that are often confusing, unattainable or unaffordable, hospice care is a treasure that should be protected and shared.

[1osullivan]

After practicing as a senior specialist in Ireland and the U.S. I can tell you the thought process is the same wherever you live. The one issue our parents have a hard time dealing with and that is "what to do with the house." Most do not know that there are options out there to realize the maximum in the value and have control of their money.

To learn more on this visit www.theosullivangroup.net

[rightathomeUS]

I really enjoyed your article Linda. And I totally agree that this is an issue that most of us don't want to think about until we have to. We kind of grow up thinking that our parents are invulnerable.

But with the number of people 65 and older hit about 506 million as of midyear 2008, according to the U.S. Census Bureau. And the number doubling to 1.3 billion by 2040, accounting for 14 percent of the total global population, we really need to evaluate this issue as a whole. I think that the aging in place and in-home care movements will take on the care for many more Americans in the near future.

To learn more about these movements, you can check out the Senior Home Care Blog (www.rightathome.net/seniorhomecare).

Keep up the great posts,
Bill

[Linda Bergthold - Huffpost Blogger]

Thanks for another great resource suggestion. I hope everyone reading these comments notes down some of the great resources that folks have shared with us. It's not for lack of resources that people have trouble figuring this out, though. If you google these topics, the number of good sites is almost overwhelming. But it's a good place to start.

[LTC Man]

The Late Night Phone Call.

The phone rings. It's 2:00 AM and I know this can’t be good news.

My voice and hands are shaking. At the other end of the phone is my brother . I know in my heart that my life is going to change with the next few words that I am going to hear. “It’s me. Mom just fell and she’s broken her hip. The ambulance has just taken her to the hospital and I’m afraid it’s not going to be good.”

I finished the conversation; hung up the phone and immediately envision different scenarios. “What am I going to do now? Is she going to be able to go home after the hospital and rehabilitation? Who will take care of her? Will Medicare pay? How about Medicaid?

As we Baby Boomers move into our retirement years these situations become more and more prevalent. I am fortunate that my brothers and I purchased a long- term care policy for my mother. The monthly payments that we once wished we didn’t have to pay became a minor inconvenience compared to the $4,000 - $5,000 per month on average that it is going to cost taking care of her.

The consequences of needing care can be so catastrophic that you will never want to put your spouse, children, or other family members through it. Purchasing long-term care insurance allows you to own your future. Healthcare Reform? Don't leave your choices to the government.

[Northernmom]

My mother and mother-in-law both reside in assisted living 3 miles from our home. Both suffer from Alzheimers. They will both tell you that they prefer living where they know they are safe. They like having people around them of their "vintage". Their facility offers activities ranging from doing puzzles, to attending the opera. I see them both at least once or twice a week. We mostly go out to lunch, simple but they love it and fight over who gets to pay (I keep track). MIL had long term care insurance that helped pay the bills for the last 3 years. We are SOOOO glad she had it.

We have had experience with several facilities in the last 10 years with all 4 parents. Most important to our moms: 1. Their own "apartment" within the complex 2. Tasty food 3. Kind and attentive staff.
Most important to us: 1. Trustworthy staff who treat the elders with kindness and respect 2. Immediate response to our concerns. 3. Onsite medical visits - eyecare, personal physician, podiatrist. It's hard taking 85+ year old out in a Michigan January to see the doc.

All facilities are NOT alike. Ask people you know to recommend facilities near you.

[Linda Bergthold - Huffpost Blogger]

How lucky you are to have found such a great facility. Sounds like both moms still have some recognition of where they are and of you, which is great. You are right about the variation in facilities. This one sounds like they really try to keep people busy, which is not always true of other places. When you visit, check out the activities schedule. Are people just sitting around slumped in their chairs?

[Northernmom]

Mother-in-law is almost past the recognition point, but after a few minutes still knows that she's with family, and she still can joke. I see all levels of activity - the ladies group that plays games all afternoon, to the man in the wheelchair that sits near the nurse's station most of the day. I like that they seem work with each individual according to their own level. MIL has been there 4 years and has gone from an active "helper" to her current state. It works for her.
One more thing - both moms chose assisted living over living with family, as long as they could afford it. They feel more independent that way, even in the assisted living setting. They are still part of many family activities, but they return to their own homes at the end of the day.

[ProAging]

Great post and comments. Over the last 20 years I have visited approximately 500 different senior living options as the publisher of a guidebook to help elders and their loved ones. Last year I realized that I am regarded as an "expert" at something I have never experienced first-hand, so I moved in!

The first thing that hit me like a ton of bricks was how different the perspective is from being a loved one who is helping someone compared to being the person actually signing their name on the application. I recommend to families to try their hardest to imagine themselves moving into the community instead of mom or dad - its amazing the different things you will pick up. In addition, think about spending the first night in the community with your parent.

I have journaled the entire experience at www.everyoneisaging.com.

Keep up the good work!

[Linda Bergthold - Huffpost Blogger]

What a great idea! You're absolutely right. You have to see these places from the point of view of the person who will be there. Thanks for this insight.

[juliedavis]

The problem with boomers and their parents is they'd all rather put their heads in the sand (I have relatives who have told me as much) than sit down and talk openly with each other about these issues. But the dialogue has to be opened. Long term health care insurance will help, for about what it costs to insurance your home (which you might have to sell to cover your costs if you don't have it), yet it's most affordable years before you'd need it, so people are reluctant. Yes, a smallish percentage of people will need it, especially if they want care at home and not at a nursing home, but those chances are probably rising because we are all going to live longer. The sad part is, unless we improve our collective lifestyle, we won't be living better and will need more care for a longer period of time. An informative website that will answer a lot of the questions surrounding all these issues is www.parentgiving.com.

[Linda Bergthold - Huffpost Blogger]

Very good points. Thanks for the helpful website suggestion.

[GrumpyOldGeek]

I learned that nearly every older person tends to wait too long. I'll touch on two issues:

Some elders tend to dismiss their aches and pains as a normal part of aging. They are lousy at following up with diet and lifestyle changes. "I've smoked for 50 years and it hasn't killed me yet". We've all heard this one. My argument is simple and direct. Their choice is to either enjoy a longer, healthier, happier, and more active retirement, or live with the aches and pains, becoming more miserable, more infirm, and more alone for the rest of their lives.

Retirement communities and elder care facilities are often considered to be where people go to die. The fact is that these options improve one's quality of life. If you're at the point where you're trying to find a place for Mom or Dad, you have fewer options because your parents waited too long.

It's not too late for YOU. Seek professional advice. Consider putting your assets in a trust. Write a will. Appoint a health proxy. Downsize early. Retirement and assisted living facilities might be a good choice. Imagine how nice things would be of you don't need to prepare your own meals any more and you can hang out with a few hundred wonderful new friends.

Or you can just wait and let your kids deal with this stuff when you can't handle things any more.

Learn from your experiences with Mom and Dad. They love you.

[beyondliberal]

Medicare Part A covers rehabilitation for patients for a total of 100 days. The 100 days start upon admission to an acute-care facility for at least a 5-day stay and continue once the patient is placed either at home or in a skilled nursing unit (nursing home). Patients with a diagnosis-related "skilled needs" include those who require speech pathology, physical or occupational therapy services. It also includes tube feeding, IV administration, central-line care, wound care, respiratory therapy, and ostomy care. Another set of 100 days can happen after a patient has a 5-day acute care stay.
Once the Part A 100 days are used up, a patient can continue on Part B (considered to be "out-patient", even though the patient may be in a facility) for treatment as long as she/he is making "significant progress" toward long-term therapy goals.
I don't know where the author got the "30 days" information, but it is woefully off-base.
Medicare.gov has all the details.
(my background is in a rehabilitation profession)

[Linda Bergthold - Huffpost Blogger]

I should have said an "average" of 30 days. On paper it's 100 days, but it is highly unusual for an individual to get the full 100 days. If you have better information on this, glad to have it shared.

[GrumpyOldGeek]

Every physician and health care advisor I've ever met knows about ways to circumvent some of the more draconian rules. It might require a diagnosis of a different problem, therapy for a different issue, hospitalization, or transfer to a different facility for a while. Most health care professionals are pretty good at finding ways to help. If you have private health insurance and your coverage gets denied or recinded, you're at risk of bankruptcy. My parents qualified for Medicare and Medicaid and they had a medigap policy that covered everything else. That's what prevented me from going bankrupt.

We need health care insurance reform YESTERDAY. We need a single-payer government-run system. We need better Medicare rules. I'll settle for whatever improvements Congress can enact for a start.

That's not my highest priority. None of these reforms will help me, but they will help my children and grandchildren.

I'm unemployed now. My employer-provided health insurance cost about $200/mo. COBRA was $700/mo. Private insurand is now about $1600/mo with less coverage, big deductables, lifetime caps, and no coverage for my lifelong polio pre-existing condition. And I have no income. My retirement funds will be depleted before I qualify for Medicare 4 years from now. I understand why health caregivers are so willing to help. God bless them all.