Residents Marion Roenna (left) and Mary Pastor play a game of Scrabble Thursday in the White Oaks at Heritage Woods of South Elgin expansion that includes memory care apartments for adults with Alzheimer’s or some form of dementia. November 15, 2012 | Michael Smart~Sun-Times Media
Updated: December 19, 2012 1:16PM
Within the last month or so, I got a call from my sister, a call many if not most of us eventually will get.
Her message: It might be time for my parents to move into some sort of facility that can help them take care of themselves — and for their grown children to help them make that choice.
My dad has decided he might want to spend what’s left of his time on Earth back here in the Midwest instead of out West where my sister and her family and my brother have settled and where my parents have been living for years. Maybe. We’ll see. If we do anything it will be in spring, he says.
Thus began a family project that is going on in three states, across two time zones.
As for the health woes involved, my mother has a replacement valve in her heart and declining memory issues, some of which might be the result of a bump to the head she took about seven years ago which caused a brain bleed.
My father has maladies caused by at least 30 years of smoking (he quit 20 years or so ago), a typical Midwestern diet of his generation, a general lack of activity, and genetics.
That they have made it into their late 70s is a tribute to modern medicine and their own wills to carry on.
I am not going to wallow in my family’s drama or share much more of it, Oprah-style, with you.
Instead, the point of all of this is to show the preliminary steps you should consider if and when you find yourself in a similar situation.
Paperwork in order
Consider this a still-in-the-works checklist being made up as it happens. Think about putting together one not just for your parents and if you are middle-aged, starting one for yourself.
First, if they haven’t done it themselves, someone is going to have to make sure mom and dad have all their personal, financial and medical paperwork in order — wills, power of attorney, insurance policies, bank accounts, property records (if they own a home or car or anything significant), medical records, including the most recent diagnoses and list of the current health situations and medications. All of that. And probably more.
While they and you get the records together, start asking your friends and social network how they might have dealt with finding a place for mom and dad to live.
Sure, Facebook can seem really silly at times, but sometimes it can have serve an actual purpose. People on it are willing to share information about their own experiences and to pass along contacts they might have.
In my case, it turned out someone knew people who work in the senior care industry. And a friend who had been through finding care for family recommended a website, A Place for Mom, as a good resource.
A Place for Mom claims to be the nation’s largest senior living referral service.
I provided the site with some information and within a half hour heard back by phone from the organization. After explaining what I was seeking, they put me in touch with some places they thought I might consider visiting.
I also called Senior Services Associates in Elgin and talked with Care Coordinator Katherine Nelson, who pointed me toward facilities to consider and who explained what the process might be like to get them into a place.
Based on these discussions and those with my sister, the first type of places we decided to look at would be assisted care or supportive care — which allow a large degree of independence — or a place where my mom could transition from living with my dad to a room or another facility that could meet needs related to her memory issues.
When you start such a search you learn that while words such as “supportive” and “assisted” are dictionary synonyms, there’s a difference in the senior care world.
According to the Illinois Legal Aid website, “The level of care provided by an assisted living facility (ALF) is very similar to the level of care provided by a supportive living facility (SLF). The primary difference between the two is that Medicaid can pay for an SLF but there is no source of public payment available for care in an ALF.”
The list price for residences at the three places I visited went from more than $3,100 per month (not including personal care services) at places that did take Medicaid to as high as $6,195 for a one-bedroom, two-room suite at a place that doesn’t.
The places: Eastgate Manor in Algonquin, which calls itself a supportive living community; Heritage Woods in South Elgin, which describes itself as “an affordable assisted lifestyle community for the older adult,” and which recently opened a 32-unit, $8.5 million facility for adults age 65 and older who have been diagnosed with Alzheimer’s disease or related dementia and that already has a waiting list; and Sunrise Senior Living in Barrington which specializes in memory care and which doesn’t take Medicaid.
Like many parents, mine didn’t save boatloads of money to spend in late retirement. Nor did they take out long term care insurance. In fact, with the way the economy has been and their medical bills over the years, they don’t have much left to their names.
According to information provided by the facilities visited and Senior Services, to qualify for Medicaid coverage for such facilities, your parents essentially have to be very close to broke. The rules can vary from state to state. And a good many places don’t take folks who are receiving Medicaid.
If they qualify, the payment from my parents to a Medicaid-taking facility of the type under consideration would be whatever is left of their income (from Social Security in their cases) after they pay what they have as health insurance. And they get to keep $90 each a month to use as they want.
Medicaid will want records that include Medicare and Social Security Cards, birth and marriage certificates, guardianship and power of attorney paperwork; supplemental insurance information; information about any life insurance policies; a list of stocks and bonds owned; and tax forms for the last five years.
Records must be supplied for the last five years for any types of bank accounts; checks for more than $500 that are not recurring (such as rent); house deeds or sales information and titles to vehicles.
Any money that Medicaid might question during that 5-year period could wind up having to be paid into the system in order to get benefits.
About $5,200 per parent can be set aside if it is used as an irrevocable burial trust. Under some circumstances a vehicle can be exempt, and if it is not deemed so, if it’s fair market value is more than $4,500 the amount over that is applied to the asset limit.
And at the end of the day, the asset limit for medical cases is $2,000 for one person and $3,000 for two.
If you need help putting matters in order, there are attorneys who specialize in laws related to senior care, and a few offer the first consultation at no charge.
If either of your parents served in the military benefits might be available through the Veterans Assistance office, too, which can help for care in their own home or at a facility.
Getting that aid, though, takes a long time.
According to Veterans Services Officer John Fanning, it can take eight months to two years to get benefit claims processed for approval or rejection.
Fanning works out of the Illinois Department of Veterans Affairs office in Elgin. He said a point to remember when filling out paperwork is that, depending on what part of the country where your parents live, those documents go to different offices. For instance, West Coast claims are processed through an office in Minnesota, while those from Illinois are handled in Milwaukee.
Also, before even sending out paperwork, check with a VA office near you to make sure all the necessary documents have been completed and if others might need to be filed.
After you send what you have to one of the centers, eventually you will receive a form letter. It can mean that someone has at least glanced at your documents, but in some cases, such letters are auto-generated after a certain time for cases put into the system.
Once you receive a longer, “duty to assist” letter requesting even more information, it means the claim is seriously being processed to be funded.
The number to call to check on claims (877-294-6380) can take at least 40 minutes being on hold before you talk to someone.
Also, that call has to be made by the person making the claim. That is, if it’s your dad looking for assistance, your dad has to call. He then can give permission to another family member there with him to talk to the representative.
And if you still feel bogged down by this, you can check with your congress member’s office which should have a V.A. liaison who might be able to offer further help.
Level of need
If your parents meet the Medicaid requirements, then once you’ve picked a supportive place, it will require a some sort of Determination of Need (DON) screening to see if your parents qualify to live in the facility. That is, they require a certain level of need for care and the place in question can meet those needs.
Also, according to the Illinois Pro Bono website’s Senior Citizens Handbook, “You cannot have been diagnosed as having a primary or secondary ‘developmental disability’ or a serious and persistent mental illness.
“A ‘developmental disability’ is defined as a disability which is attributable to mental retardation or a related condition. You must be tested to make sure you do not have tuberculosis.”
Depending on the facility, the screening might be done there, at home, or where the parents are staying. Each parent’s screening takes about an hour and is done on an individual basis.
All of this assumes that there will be a room available in the facility in which you would like your parents to live and that your parents would be able to get into the place relatively quickly.
As for the facilities I visited, I chose my three stops thus far on their proximity to where I live and the type of care offered. The plan is to widen that geographic circle, if it becomes necessary.
All three were pleasant, well-kept, and reminded me of a cross between some sort of resort hotel and a college dorm or residence hall, albeit with pull cords or other devices by which people could get prompt help should they need it, staff present to assist residents, and activity happening geared toward seniors and their needs.
The living quarters come in a variety of floor plans and range from 300 square feet for a studio to 600 square feet, so parents probably will have to scale back on what they bring with them.
What you also will want to know should include the type of nursing staff and the hours that staff is on duty; size of staff for the facility; the physician used and his or her availability at the facility; the policy and procedures for visiting and for parents leaving; other medical services that might be available on site (dental, lab, pharmacy delivery, medication reminders); activities and field trips offered; meal plans; options for getting assistance with bathing, dressing and cleaning the housing unit; other senior care and medical facilities the one under consideration works with; and what services and amenities might incur an extra charge and which are included with the monthly fee.
Finally, while this process should remain in large part an analytical one, there should also be room for trusting your gut.
As Heritage Woods Administrator Trish Uttich put it, “Listen to your heart. When you walk into a community for a tour, were you greeted with a warm and friendly welcome with lots of smiling faces? Fancy curtains and furniture do not make a home. A home is where your heart is.”