Navigating the Journey of Aging Parents

By Cheryl Kuba

When Your Elderly Parent Moves In

One quarter of all care recipients live with their caregivers, according to a survey by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons, AARP (Pandya, 2005). Once the decision is made to move an elderly relative into the adult child’s home, considerations and adjustments need to be made in the family’s lifestyle.

Just 20 percent of parents would choose to move in with their kids, while 63 percent of adult children say they would have their healthy parents live with them, according to a report by Mark Clements Research in 2004 for Parade Magazine.

Several pages of this chapter are dedicated to tactics on keeping the entire family stress free. The sandwich generation is defined, and a new dimension of this family care paradigm, the double-tiered sandwich generation, is introduced.

Prior to a parent’s moving in, assessments need to be made regarding the strengths and weaknesses of the rest of the caregiver’s family. In the following pages, care receivers who have moved in with their children, discuss why moving in sometimes means falling out. Independence and loss of freedom by the care receiver are also reviewed. For the most part, the elders who are moving in want to continue to have a feeling of self-worth, and to look forward to contributing to their new household in some way. They want to have a feeling of involvement in their child’s home, and to continue to “parent” and “grandparent.” In some cases, these efforts are welcomed, in others boundaries are breached and authority is questioned.

In this chapter, the new living arrangement is also viewed from the other perspective — that of the caregiver. Adult children are guided through the paces of asking for help and being conscientious about not shouldering the burden of care alone.

Both care receiver and caregiver should be ready for some alterations in the dynamics of their current family relationships. Each individual who takes on the role of primary care provider needs to recognize that once an elderly parent moves in, there will be a shift in who gets the majority of the caregiver’s attention.

 “I always said I would never live with my children. When you are younger,
you always want to be independent. Maybe I didn’t want to move in
with them because I didn’t have such a great relationship with my own mother.”

Anita believes that the aging parent cannot be impervious toward change,
and must be accepting of the adult child’s lifestyle. “When parents move
in with their children … they have to understand that their children
have problems, too. I certainly never want to be a burden to them.”

— Anita, 89, who has lived with
her daughter and son-in-law for 6 years

The Entourage of Care
“Who are all these people?”

Prepare yourself for a parade of health care professionals who will come and go through your front door to serve your ailing relative’s needs. The caregiver and his or her family should be ready for the entourage of care to arrive. The army of helpers could include physical and occupational therapists, visiting nurses, physicians, home health aides, hospice workers, volunteers, and direct medical-equipment delivery people.

Grab Bars Are Not a Snack
Home Health and Adaptive Equipment

The delivery trucks are lined up in the driveway as you make room for the direct medical equipment (DME). Although the devices and equipment needs are individualized for every patient, here is a sampling of what supplies may be needed at your house:

• Wheelchair
  
• Hoyer lift
  
• Commode
  
• Elevated toilet seat
  
• Shower chair
  
• Respirator
  
• Grab bars
  
• Oxygen tank
  
• Hospital bed
  
• Walker
  
• Crutches
  
• Pacemaker check kit
  
• Cane
  
• Incontinence products

Assess the space and accessibility in your home for this equipment, including the width of doorways. Caregivers should anticipate that physical changes to their homes might be necessary to make the home more adaptable to the elderly relative. Modifications to the family’s bathrooms, entrances and doorways are always a possibility. Check out information about securing a home loan in the event you need modifications such as ramps and larger doorways. Consult your personal banker for loan information.

When Anita (who was introduced earlier in the chapter) moved into the town house with its three levels, she anticipated that walking up and down the stairs to her bedroom could become a problem as her knees become weaker. As a result of her forward thinking, Anita had an electric stair-climbing chair installed between the ground level and living room level of her home. “I only use it if me knees are giving me any trouble.”

Using financial strategies and good common sense are a must when considering home renovations and budgeting to meet the financial demands of having another person in the home. Securing a home-equity loan for renovation is one option. The loan can be a good way to pay for repairs. However, since it is secured by your house and property, you could lose your home if you cannot meet the terms of the loan. Make sure you can afford to make the monthly payments.

When investigating loan programs, deal only with reputable lenders. Scam artists prey on the elderly and the uninformed who are looking for ways to build up equity for home renovations.

Another Mouth to Feed—Looking for Financial Help

In a 2000 study by the American Society on Aging, respondents who were caregivers reported helping with expenses for 2 to 6 years for a total of an average of $19,525 in out-of-pocket expenses. An interesting and innovative way to bring more money into your household for food and care is to get a reverse mortgage on your home. A reverse mortgage is a loan against your home that requires no repayment of the loan for as long as you live there. To qualify for a reverse mortgage you must:

Own your own home, and all owners listed on the mortgage must be at least 62 years old. If you are over 62 and moving an elderly parent in with you, their age is not a problem.

Your home must be your “principal residence.” That is, you must live in it more than 6 months of the year.

For the federally insured “Home Equity Conversion Mortgage (HECM), your home must be a single-family property, a two- to four-unit building, or a federally approved condominium or planned unit development (PUC). Cooperatives and most mobile homes are not eligible. Some “manufactured” homes do qualify if they are built on a permanent foundation and classed and taxed as real estate.

If you have existing debt against your home, you must pay it off before getting a reverse mortgage, or use an immediate cash advance from the reverse mortgage to pay it off.
Additional information and answers to frequently asked questions about reverse mortgages and home equity loans for renovation are available from the American Association of Retired Persons’ (AARP) website, www.aarp.org/revmort/, or the AARP Home Equity Conversion Information Center (202-434-6044). For information from the National Center for Home Equity Conversion (NCHEC), write to them at 7373 147th St., Room 115, Apple Valley MN 55124.

Some cities have interest-free loan programs to finance home repairs for low-income residents. Many non-profit groups, such as Habitat for Humanity, offer home rehabilitation services for the elderly or for families without adequate financial resources. Other resourceful ways to raise cash for home improvements are: borrowing against your life insurance policy or annuity; a low-interest-rate credit card; federal home improvement loans; or state veterans loans. To qualify for a veteran’s loan, you must have completed at least 90 days of active military duty.

Having an elderly parent move in can have its financial rewards as well. Earlier in this chapter, you met Anita, who lives with her daughter and son-in law. Anita’s move into the town home with her daughter made it financially feasible for both parties to move to a larger home. She says, “I said, ‘Listen, I am going to pay rent wherever I go.’ Now I help them with the mortgage.”

Anita is just one of many care receivers whose move in with the children meant combining two households into a new, larger location. There are many benefits that are beyond financial when moving aging parents in their children’s home. The blending of two households can be a benefit for both care receiver and care provider. Anita is an integral part of running the house. “I help with Simon [the dog], and accept packages. I am less of a burden now [living with my daughter], than I was when I lived alone. I was being rushed off to the hospital all the time when I lived alone.”

Getting grandparents and grandchildren under the same roof, in many cases, creates a special bonding experience that may not have been present before the entry of the elder. In the case of Edward, a feisty 75-year-old Irishman who is a semi-retired civil engineer, it was his grandparenting initiative that made him move across the country.

A native of Port Chester, New York, Edward lived most of his life on the east coast. In 2004, he moved to Chicago to be closer to his son and to contribute to the positive upbringing of his three grandchildren. Prior to his move, he had mentored his 8-year-old granddaughter in New York on everything she could possibly learn about carpentry and architecture. He took her on many field trips to various construction sites. Although Edward didn’t like to leave his granddaughter in New York, he remained optimistic about his move to Chicago. “I’ve done all I can, but there are three kids [his grandchildren in Chicago] out here who need some parenting and grandparenting. I try to stay out of it, but once in a while, it overcomes me.”

Does the Sandwich Generation Live at Your House?

Sixteen million adults, representing half of all baby boomers ages 45–55, are part of the “sandwich generation.” In simple terms, this includes adult children taking care of aging parents while caring for their own children, or who have children living at home while assuming elder care responsibilities. Many Americans in this age group have aging relatives living with them, as well as children under 21. My husband has his own take on where he and I fit within the sandwich generation. We don’t have kids, but we were the primary caregivers for my parents. He believes we are the “open-faced” sandwich generation.

The New Double-Tiered Sandwich GenerationTM

Now that Americans are living longer, another layer of the sandwich generation, the “Double-Tiered Sandwich Generation,” has evolved over the last 10 to 20 years. It consists of adult children who are grandparents themselves and are taking care of their own aging parents. Conflict and stress are evident when the adult child resents time spent with an aging parent, and feels that more time could be spent with the grandchildren. These younger grandparents usually are 55–75 years old, with parents who are in their 80s or 90s. They are probably living on a fixed income and helping to shoulder the additional financial burden of the elder relatives.

What about the Kids?

Adolescents are one of the elements that add spice to the sandwich (generation). Recognize that once your elderly parent moves in, there may be a power struggle for attention between your child and your parent. Having teenagers living at home adds yet another dimension to possible tension and stress regarding their own mom or dad’s attention level.

Help your children understand why your elderly relative’s moods may change. Explain to them what happens when their grandfather is in pain. Include your children in the care plan. Give them a chore to help Grandma. Help your child remember new boundaries that are in place regarding noise, privacy, and space. Spend as much time with your kids during this period as possible. Ask for help. If parents of other kids offer to help, take them up on the offer.

Oh, Brother—Don’t Forget Your Siblings

Look to your brothers and sisters for help. Family bonds often become strained when it comes to care management for Mom or Dad. Include everybody. Figure out the strengths and talents of each brother or sister and use those talents. Work as a team. Let past sibling rivalries and resentments stay in the past. Listen to each other. Respect each other’s opinions. Include the in-laws. They often want to help. Some relatives just need to be asked. (Read more about siblings working as a team in Chapter 11.)

No two families are alike. Counselors who have worked with families whose loved ones have Alzheimer’s disease have put a new spin on the “seen one, seen them all” phrase. They say, “When you’ve met one Alzheimer’s family, you’ve met one Alzheimer’s family.

Living on the Edge
Living Closer, Not Moving In

One way Edward, our New York to Chicago transplant “stayed out” of his own son’s parenting arena was to have his own apartment just down the street from his son and family. Divorced from his first wife and a widower by his second, Edwards’s decision to move was solely his own. He spends the majority of his days at his son’s house.

Jimmy, 85, and his wife, Mabel, 82, left their 30-acre farm in rural Maryland and moved to a two-bedroom condominium in Chicago at the insistence of his stepdaughter, Bobbi. They moved into the same condominium complex where Bobbi lives. Their daughter had become aware that the farm, with its three buildings to maintain, had become too much for her parents to handle. Bobbi was also worried that their rural location would leave them isolated during the next snowy Maryland winter.

When you talk with Jimmy, you hear reluctance and acceptance in his voice about the transition and his new surroundings. “Well, there are physical aspects of a farm that age cannot overcome. A farm in Maryland, weather wise, is unsuitable for older people who can’t get immediate attention. You can be on a farm, slip, and fall down. You don’t have the strength to get up. You don’t have the visitors that you would have if you were living in the spot where younger people were constantly in contact with you. So, if I fell down at 8 o’clock in the morning, there are 200 pounds of me that my wife couldn’t pick up. It might be too slippery for her to go a quarter of a mile to get some help. There may be no other way. The phone could be down.”

The scenario regarding a potential accident or illness on the farm was enough to prompt Jimmy and Mabel to move. “It was necessary to make those decisions and the opportunity came along. I thought about the proposition that Bobbi knew about, and we just acted suddenly and have tried to capitalize on that. Even if I did go out and slip and fall now at 8 o’clock in the morning, before 8:15 somebody would have decided I wasn’t a drunk lying there. Someone would offer some type of help here in the city. You just couldn’t expect help like that in a community like a farm area in Maryland. There’s not the number of people there to call upon, much less depend upon. I couldn’t expect you as a neighbor to come looking for us every hour or so to see if I was all right or even call me on the phone. You have the same things to do for those who are near and dear to you in your own family.”

Moving In — Less Space, Less Freedom

For the aging parent who is moving into an adult child’s home, the transition doesn’t come without compromise and some loss of independence. The senior who once had an entire house to move around in may now be relegated to a bedroom and shared bath. “When I first moved in, my independence was comprised in certain ways,” Anita said, in talking about her move. “My daughter was watching me all the time, saying, ‘Are you doing too much?’ I feel more confident now. It takes time.”

Jimmy also felt that his independence had been reduced as a result of his move. “I lost a lot of freedom as far as my own particular activity was concerned. I can’t just go to the bank or go shopping for small things that probably never meant anything to anybody. For instance, I lost a pocketknife, which was the last one I had. And it hasn’t been replaced yet. Nobody sees any need, any need with a capital ‘N’, for me to have another. But, it’s something I’ve had all my life and used to use on little things.

“ I’ve got a key ring on here now. With my knife, I’d pry it open, put the two rings together and be through with it in 3 minutes. Now, it takes me sometimes 20­25 minutes to try to get that key ring open, because I have nothing small like that. I don’t want to use these stainless steel knives because they end up bending. They’re not good. That’s the kind of freedom I miss.”

The Ties that Bind
Making Your Family Members Stress Free

A critical first step to take before the move-in takes place is to open the lines of communication among you, your aging parent, and the rest of the family. Try to be proactive about conflict and emotional situations that could arise. For Anita, that meant a mother-to-daughter talk early on. “We talked about it. And we decided that if we had anything on our minds, we would sit down and discuss it.” Anita feels that the move has brought her daughter closer emotionally. She also believes that the efforts for all to live in harmony can’t be one-sided. “My daughter is not too easy to get along with. Sometimes she can be flippant and caustic. The parent has to learn to give a little bit, too. It’s a trade off. I understand her, and she tells me, ‘Mother, that’s the way I am.’”

Your home may start to feel a little crowded. Maybe your kids, or you and your spouse have to give up a bathroom. Discuss who’s giving up their room. Decisions need to be made about family laundry, extra supplies, family meals, special diets, and privacy.

One more thought about space. If you don’t have a spare bedroom on the first floor, the family dining room often is a great spot to convert for an aging parent. It is usually on the first floor, is spacious, and has a wide doorway. Some even have multiple doorways. In the days of yesteryear, or at least in the 1950s, my ailing great-grandmother moved into her dining room, hospital bed and all, where she “held court” until her dying day.

Action Steps to Keep Harmony in the Home

Have a family meeting before your loved one moves in.

• Make a plan regarding who will let the medical personnel in and out.
  
• Decide which areas of the home are off limits to the new help.
  
• If you have children living in the home, set aside personal time with them.
  
• Plan some family activities that don’t revolve around your elderly parent.
  
• Make sure that your family pets know about some of the new boundaries.
  
• Have your family plan include times when loud music should be avoided, or children’s friends should not come over.
  
• Try to keep the family’s current schedule for activities intact.
  
• Check out respite programs for your elderly loved one when the time comes for a family vacation.

Family Fallout That Turns to Elder Abuse

Several entries in this book address elder abuse and neglect. The topic is covered more extensively in Chapter 12. But it is focused on here because a frail individual can become extremely vulnerable when moving into a family member’s home. The elderly individual could become exposed to potential volatile situations that can result in abuse or neglect. Too often, a caregiver can reach a breaking point with the result that the elder suffers the consequences.
An arresting fact revealed in the Department of Health & Human Services Administration on Aging’s 1998 National Elder Abuse Incidence Study shows that among known perpetrators of abuse and neglect, the perpetrator was a family member in 90 percent of cases. Two-thirds of them were adult children or spouses.

Every effort has to be made to not let any situation get out of hand where abuse, neglect, or exploitation can happen. If there are other family members living in the home who have a history of violence or exploitation, alternate arrangements should be made for the elderly loved one.

Reporting incidents of abuse is critical. Often the frail, vulnerable victims of abuse are too humiliated to do self -reporting. In many instances, the elderly relative doesn’t want to expose an abusive son or daughter.

National Center on Elder Abuse
1201 Fifteenth Street NW, Suite 350
Washington, DC 20005-2842
(202)898-2586
www.elderabusecenter.org

In addition to the national Center on Elder Abuse listed above, the local social service agencies, police departments and hospitals will get involved in abuse cases when reported. The following table includes toll free numbers for reporting elder abuse out of state. If the number listed is for in-state calls only, call the Eldercare Locator at 800-677-1116.

Don’t Go It Alone—Ask for Help

Having your elderly loved one move in may be the result of an illness or because they can no longer can physically take care of themselves. As the caregiver, don’t hesitate to bring in outside help.

Hiring a home aide doesn’t have to be financially out of reach. Many agencies have sliding scale payment programs, depending on a person’s income. Some organizations offer volunteers who can help with your caregiving chores.

Assess how much help you will need. Do you need someone to come in for a couple of hours, so that you can run some errands? Does your loved one need twenty- four hour care and help with grooming, incontinence or transferring?

Bringing in the Hired Hands
Do You Need Home Care Or Health Care?

Home Care services are those that are custodial, such as cleaning, laundry, escorts, sitters, bathing, brushing teeth, toileting, and dressing.

Health Care services include physical therapy, speech, catheterization, respite care, medication monitoring, wound care, and occupational therapy.

There are two methods for employing paid caregivers in your home.

An individual hired through an agency. These individuals are usually licensed and bonded, and the agency can get a replacement if your caregiver is sick or late. The cost is much higher for agency help, but there are benefits.

An independent caregiver. You take your chances when you hire someone independently. Who will replace them for time off? What if they don’t show up? Has there been a background check? The daily/weekly charge is much less than hiring through an agency.

There are many questions to ask when hiring a home care agency or overseeing a private-duty aide. (Some of these questions are similar to those in Chapter 6, but are covered here from a different perspective. Cross-reference the questions in Chapter 6).

Action Steps for Hiring

Have a written agreement about pay schedule, severance pay, advance pay, and who will administer the checks.

• Does the individual smoke?
  
• Are your household pets a problem?
  
• Will he have a replacement for days off?
  
• Will you allow the aide to have visitors?
  
• Who is responsible for personal phone calls made by the aide?
  
• Make a plan about the aide’s meals.
  
• Talk to your accountant about paid caregivers and taxes.
  
• Talk to your insurance agent about coverage in case the caregiver is injured in your home.

Welcoming an aging loved one into your home comes with an obvious, yet unspoken question: How long will the visit last? The answer can’t be given in black and white or definitive terms. The ailing relative will stay until death? Until nursing home placement becomes necessary? Until he or she is well enough to go out independently into the world again?

To ensure that the ties that bind a family together don’t become frayed because of the elderly relative who has moved in, communication is key. Elderly people want the freedom to continue to live lives that are familiar and comfortable. Primary caregivers must monitor their own sensory overload levels. With enough advance planning, open discussion, and respect for each family member’s needs, the multigenerational family can thrive together under one roof.

Used by permission.