Joanne Jansen’s mother Ruth* had lived in the same home for 45 years. Ruth raised three children there, nursed her husband there until his death and kept a box of toys in the hall closet for when the great-grandchildren visited. Ruth had been living alone for 12 years since her husband passed away, and despite Joanne’s efforts, she could tell her mom wasn’t eating well and was becoming more confused. Some days, Ruth forgot to eat, or she didn’t feel like going through the trouble of fixing a meal for herself. As she lost weight and became increasingly frail, she began sleeping more throughout the day, which caused her to wake up disoriented and not know when it was time to take her medications.
*Names have been changed to protect residents’ privacy.
“I got into a routine where I’d get off work, run by the store and pick up a few things, and go by Mom’s,” Joanne says. “I’d make sure she had taken her medicine and that she’d eaten something, and I’d try to snoop around a little and check her mail or the laundry.” Gradually, the daily visits became longer.
“Little by little, I’d see more and more that needed to be done,” she says. “She’d forget to pay a bill or finish a load of laundry, and then it would have to be washed again. Or she’d leave food in the fridge too long; I was afraid she’d get sick from eating something bad.”
As Ruth gradually required more and more attention, Joanne realized it was affecting her own health. She was feeling overwhelmed, resentful and depressed. Joanne’s husband Tom noticed when things were getting out of hand.
“She’d get home from her mom’s house at 8:00 or 9:00 at night and still have her own affairs to tend to,” says Tom. “Our kids and I tried to pitch in and do what we could to help ease the load, but it’s not as easy as you’d think. There are the things she enjoys doing for us or for herself, and she just didn’t have time to do it all. Her existence had been reduced to a series of tasks that she could never catch up with. I was afraid she’d have a stroke. Something had to change.” But change was just what Joanne feared Ruth would not handle well. She liked her home, her neighborhood and her routines.
“Mom had to give up driving a couple of years earlier, but we had a routine that seemed to work. I’d leave work to run her to doctor’s appointments, and I’d take her to the hairdresser and grocery store on Saturdays.” Ruth’s neighbor took her to church on Sunday, and Joanne says her mother was satisfied with that arrangement. “She didn’t want to lose what independence she still had, she didn’t want to be a burden on anyone and she sure didn’t want to leave her home.”
Eventually, Joanne knew it was time to talk to Ruth about moving out of her home and what her options would be. With Joanne and Tom working full time and no other family nearby, they felt that moving her in with them wouldn’t solve all their problems.
“It’s not that I wouldn’t have taken her in to live with us,” she explains, “but, we didn’t feel like we would be solving anything with my husband and I both gone 10 hours a day.” It was evident to Joanne that, in order to give her mother quality care for her remaining lifetime, they would need to look into an arrangement that met her needs, while freeing Joanne from the role of sole caregiver. Finding the right time to bring up the subject proved difficult.
“I wanted to wait until my brother Mark could come down from Virginia so we could present a united front,” Joanne remembers. “We finally made plans for Mark and his family to visit over Fourth of July, which was about a month away.”And then, in late June, Joanne got the call she’d been dreading. Ruth’s neighbor had come by to get her for church one Sunday, and Ruth did not answer the door. The neighbor used the key Joanne had given her for just such an emergency and found Ruth on her kitchen floor, where she had fallen hours before.
“Thankfully, she wasn’t hurt, except for her pride, but she had nothing to grasp onto to try and pull herself up,” Joanne explains, “So she had laid there for hours. She had wet herself. She was exhausted and embarrassed.” It was not the scenario Joanne wanted to open a dialogue with, but she was able to get her mother to see that this arrangement was a burden for the whole family and that they needed the peace of mind that a facility could provide. After speaking with Ruth’s doctor, Joanne determined that Ruth was the perfect candidate for an assisted living facility, or ALF. She didn’t need constant supervision or skilled nursing care, and she could do most things for herself, but she required assistance with some activities of daily living, such as meal preparation, laundry and medication reminders.
Today, Ruth has her own apartment in an assisted living facility just a couple of miles from Joanne’s home. She has a housekeeper and laundry service, assistance with grooming and medications, and the security of knowing help is available round-the-clock. When her great-grandchildren come to visit, she still has the box of toys from home she can pull out to entertain them or they go outside to feed the ducks that frequent the pond out back. She takes the facility’s bus to the grocery store and the pharmacy, and her former neighbor still comes by to pick her up for church on Sundays so they can catch up. She participates in the book club, bingo and goes to movie nights.
The best part? Her daughter has gone back to being a daughter, wife and mother, instead of caregiver. This is the ultimate goal of assisted living: returning adult children to their familial roles while providing quality care to family members.
“The best thing we can do is let sons and daughters become sons and daughters again. They can go to work or go on vacation without worrying,” says Geoff Oetjen, director of sales and marketing at Chambrel Pinecastle, an Ocala assisted living facility. One of his favorite success stories involves a 92-year-old man who was moved into Chambrel by his son. The son called a few days after his dad moved in and asked Geoff what he’d done to his father.
“Dad’s talking more; he’s more animated,” Geoff recalls him saying. Geoff had the pleasure of calling the son later to let him know his father was attending the facility’s happy hour and dancing! He told Geoff, “You just don’t know how much you’ve made my day.”
Another success story occurred when a mom told her son he shouldn’t visit that day because she didn’t want to miss bingo! Geoff and his associate Mary Peters stress that it’s all about giving people choices so that they maintain an active lifestyle and the independence to choose their activities while providing assistance where needed.
“We get feedback all the time from families saying their loved ones are happier because they are with people their own age with similar interests,” Mary says. “They are eating better, taking their medications more regularly, and they don’t have the stress of taking care of a house.”
While many people wait until an event like Ruth’s fall before investigating their options, more and more are becoming proactive. The Internet is a great tool for research with many support organizations for caregivers. Investigate your options, and have a plan in place that you can discuss with your parents so they are invested in the process.
Investigate The Options
A nearby apartment or retirement community.Your first step may be to move mom or dad closer to you, especially if you are not in the same city or state to begin with. An apartment complex with an active, caring management staff or a retirement community where the other residents are seniors who take an interest in looking out for each other can provide some security while still affording your parents complete independence.
Your home. Moving a parent in with you does have its advantages, which is why 70 percent of caregivers are caring for a loved one in their own home. You cut out time spent traveling back and forth to check on a parent, you can monitor his or her activities and health care, and you can enjoy family activities together daily.The No. 1 reason many people choose this option, of course, is to save money that would be spent on another residence.
Assisted living facility. ALFs are ideal for people who are independent but require assistance with activities of daily living, such as meals, housekeeping, grooming, bathing, medications, using the bathroom or transportation. Skilled nursing care is not provided. The monthly cost of ALFs depends upon the level of assistance needed and living quarters. ALFs can exist in a residential home setting or apartment-style living.
Intermediate care facility. These facilities provide all the assistance of an ALF for people who cannot live on their own, but they also provide some nursing care, though not 24 hours a day. Often, an ALF will have an intermediate care wing where a resident may transfer as he or she requires more care.
Skilled nursing facility.Nursing homes provide continuous skilled nursing care to residents who cannot live on their own. Monitoring blood pressure or ventilators, administering injections or intravenous feedings are examples of skilled nursing care. Nursing homes are not just for the elderly. Adults of any age may go to a nursing facility temporarily to recover from a stroke, fall or surgery if they require round-the-clock skilled nursing care. Others may live out the remainder of their lives in a nursing facility. Nursing homes offer a variety of activities to residents of all ability levels.
Take A Tour
“Tour, tour, tour,” says Trey Adams, admissions director of Ocala Health and Rehabilitation, a skilled nursing facility in Ocala. Adams says when looking for a nursing facility for your loved one, visit the facilities you are considering more than once, and use your senses!
“Watch the residents and staff: Do they interact with each other and know each other’s names? Do they look happy? Talk to the residents and listen to what they have to say about their home. Smell the rooms: Is there an odor, or are they clean?” Adams recommends having a meal at the facility. “Taste the food. Would you serve it to your mother?” Using your own senses will help you get a real feel for the home. Additionally, ask great questions. Adams suggests the following questions when looking for a skilled nursing facility:
What is the average length of employment of staff? A facility with a high turnover rate is a warning sign, particularly nursing staff. You want to know the staff is happy working there and that there is continuity of care. Residents with Alzheimer’s or dementia do better when the staff is not constantly changing.
How many doctors serve the facility? One doctor means long wait times for answers or visits, while 100 doctors means you never know who will be taking care of your parent. Ideally, somewhere between four and 20 doctors serving the facility will ensure you have accessibility and familiarity.
What are the visiting hours? Look for a facility with no restrictions on visitors. Some facilities up staff during the day and down staff at night. If your parent’s nursing home makes you leave at 8pm, you don’t want to wonder what happens after you leave. If you work nights or odd hours, you want to know you can come visit whenever it fits your schedule.
Financial and Legal Considerations
One of the first conversations you should have when considering a parent’s living arrangement is with your siblings. It may be necessary to have one sibling handle finances, and this is an area that can cause tension or resentment in the family. Deciding who is the best choice to manage financial affairs should be based on who can most effectively communicate their needs with your parents, their financial institution and their caregivers. Whoever is given this responsibility needs to know where Mom or Dad keep their financial and legal documents and whether retirement accounts, insurance policies and wills have been kept up to date.
If your loved one is forgetting to pay bills but does not want to give up control of his or her finances, you may begin by establishing a joint bank account so you or a sibling can check monthly statements and make sure bills are being paid. You may also utilize online banking, setting up automatic payments for regular monthly bills. A sibling with access to the login information can check and make sure payments are being made.
One of the most important things you can do right away is to make sure your parents have a durable power of attorney. This legal document gives someone the right to make financial and legal decisions for your parent if he or she becomes incapacitated. You do not want to wait until an event occurs, as then you will have to go to court and seek guardianship, a complicated process anytime but especially in a time of crises.
Paying for Care
Medicare covers short-term care in a skilled nursing facility after a hospital stay of at least three days. If a person needs to go into a nursing home to recover from a stroke or surgery, Medicare will pay all costs for 20 days and partial costs for an additional 80 days. Medicare will pay for home health care for a maximum of 35 hours per week and Hospice care for the terminally ill. Medicare does not cover assisted living or adult day care.
Medicaid covers skilled nursing care while allowing a person to retain their personal savings for additional expenses such as telephone and TV service, dentures, hearing aids, beauty shop appointments and personal belongings. Medicaid is a viable option for those whose household income is not sufficient to cover care privately. The application process can take several weeks and is complicated, so it may help to enlist the aid of an eldercare representative.
Long-term care insurance policies usually cover skilled nursing care in a licensed nursing home or home health care facility. Some policies also cover physical therapy, housekeeping, assisted living facilities, adult day care and respite care for caregivers. Many people are turned down for coverage due to preexisting conditions, alcohol or drug abuse and some mental disorders. Long-term care policies usually have a maximum daily benefit and maximum number of days covered. For example, a policy may pay $100 a day for up to five years and is renewable as long as premiums are paid. Premiums are higher as people age, so more and more people are purchasing policies 20 to 30 years before care is needed. The high premiums of long-term care policies often scare people from purchasing one, but the cost of care without benefits is even higher. Some offer a death benefit, which returns some benefits after death, so it’s important to shop around. Check with your parent’s insurance provider to see if long-term care can be added to an existing policy.
Reverse mortgages allow homeowners to receive cash payments against the equity they have built up in their home. No repayments are required until the home is sold. To qualify, homeowners must be at least 62 years of age and have paid off all or most of their mortgage. The reverse mortgage will pay off any remaining amount on the original mortgage before you receive any money, so if you have a large unpaid amount on your mortgage, a reverse mortgage won’t work for you.
Veterans’ pensions are available to those who served during any U.S. conflict through Desert Storm. Additionally, benefits are available to cover medical costs and housing renovations necessary to cope with disabilities resulting from service, even if the disability did not appear until later in life. Check with your local VA office.
Online Resources for Caregivers
Family Caregiver Alliance, caregiver.org
National Alliance for Caregiving, caregiving.org