A Guide to Caring for Aging Family Members

Archive for the ‘The Financial Considerations Involved with Caregiving’ Category

An Optimistic Update: Katie’s Story, Part Twenty

OptimismFor the first time, I am reporting to you with a sense of confidence.

The problem with funding has been rectified.  The only major item remaining to be acquired is the shower wheelchair.

The change of caregivers has taken place. “Faith” started last Sunday, and already she is a comfortable part of the family.  Faith is a take charge individual.  She sends Sam out of the room when she performs Katie’s personal care.  Moreover, she is a task-master with Katie’s exercises.  This is important since Katie has lost a lot of her inherent drive.

Faith Building BlocksThe experience with Grace was an opportunity to learn and a sturdy building block for a successful experience with Faith.   Sam has learned that he can step back and let Faith do her job—he is in fact, eager to do so.  It is obvious that Sam is relaxing as stress decreases.

Faith stones

With Faith, I hope to believe:

THIS PLAN WILL SUCCEED!

Success ahead

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Caring for Katie at Home—One Big Roller Coaster Ride: Katie’s Story, Part Eighteen

Roller Coaster

Caregiving for Katie is one big roller coaster ride.

As of last Monday, Katie has been home for six weeks.  I would like to report that everything has worked out and this care plan is now sailing smoothly.  But since most of you are probably caregivers, you already know that there’s always a problem to be mitigated just around the next bend—especially in a scenario as complicated as Katie’s.

Ironically, even improvements bring with them another glitch.  When I visited Katie on Tuesday, she was especially quiet and blue.  When I asked her about it she said, “I’m not sure I will ever walk again,” and, “Every day is the same as the last.”  I asked her if being home was better than living in the nursing home and she replied, “Oh, yes!”  But, because Katie is much more aware and much more expressive she is also recognizing the profound extent of her limitations, unlike in the nursing home where she just slept through time.

On Tuesday, Sam said that for the past three days Katie had been crying out again.  He doesn’t feel that he can stand it if she doesn’t get a handle on her pain.  But then during Thursday’s visit he reported that Katie had shown improvement again–hence the roller coaster analogy.  The OT recommended that Sam and Gloria give Katie a heads up before each and every movement when transferring and providing personal care.  I reminded Katie that it is her responsibility to maintain control—she is the only one who can do it.  Of course we remember to acknowledge the difficulty of bearing pain and to lavish her with praise when she does well.  Ups and Downs

The biggest UP that I can report is that Katie’s room is finished and that Gloria is now able to provide care independently for those times Sam must be away from home.  That alleviates the need for Sam to make arrangements with the neighbors to cover when he is working at his part time job.

The biggest DOWN is really a bummer.  The transfer of funding from the nursing home to the community was supposed to be a “seamless” process.  Seamless, indeed!  There has been NO transfer, so none of the vendors have been paid for the environmental modifications, consumable products have not been provided (such as diapers, wipes and barrier cream), delivery of equipment has been held up (such as the combination shower chair-wheelchair), and most importantly, the agency caregiver has not been paid (because she is living in the home 24/7, all she has received is her room and board).  Obviously, this is causing a great deal of stress for everyone involved, and the problem needs to be rectified soon.

I have a few ideas for dealing with some of these problems, but I will leave that for the next post.  In the meantime, I would sure appreciate hearing any thoughts and suggestions you experienced caregivers may have to offer.

Complicated Ups and Downs

The Ups and Downs of Caregiving. It’s Complicated.

 

Caregiver Contracts

http://www.agingcare.com/

On the AgingCare.com website, saugo5774 asked the following question:

Protect Yourself with a Caregiver Contract

Protect Yourself with a Caregiver Contract

Do I need a caregiver agreement between me and my Mom?
Mom is giving me a check each month to care and support her.

My reply:

Caregivers can be compensated for services by using a Caregiver Contract
or Personal Service Agreement

The contract should address:

1) tasks—personal services, personal health services, driving, household services
2) work schedule and hours
3) wages and how to be paid (rates comparable to those of home-health companies)
4) care receiver Social Security payments and caregiver reporting
5) reimbursement of caregiver expenses and car maintenance.

Another important “contract” is a family agreement, generated from a family meeting. I don’t think this is the type of “agreement” you were referring to in your question, but it is important nonetheless. A productive family meeting (which includes your mother) can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.

Either of these types of agreements are more binding if they are at least notarized, if not drawn up with an attorney. If your objective is to be paid, I would definitely work with an attorney to draw up a Personal Service Agreement.

Barbara Matthews

 

 

Aging in Place: Moving in with the Kids

On page 31 of “What to Do about Mama?” I state:

“Many of the decisions we made and the priorities we established about caregiving were based on the observations I had made as an assessor at the Area Agency on Aging. Families experienced a lot of stress in their caregiving roles and dealt with their challenges in different ways. Some of my impressions were:

  • Long-distance caregiving is very difficult. Families worry about their loved one’s safety and how he or she is living. Caregivers expend a lot of time, and probably money, on trying to maintain a good quality of living. Long-distance caregiving makes you feel as if you have no control.
  • Providing support for loved ones who live “closer” is also challenging. Caregivers try to balance their jobs and other responsibilities, such as parenting, with meeting the needs of their senior family member. They often maintain two homes, both inside and out, as well as doing other tasks, such as laundry and shopping. Caregivers might have to take time off work to provide transportation and go to medical appointments. The list is endless.
  • Families that had attached in-law quarters—close but separate—appeared to me to fare better.”

During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent-living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation.

It was the last bulleted point above that impacted our decision to extend to my mother-in-law the offer to move into our home. When she accepted our offer, my husband and I gave her our first-floor master bedroom suite—bedroom, bathroom, and sitting room—and filled the rooms with her furniture and doll collection.

OLYMPUS DIGITAL CAMERA

Great Grandma enjoys visiting with the children in her personal living space. She frequently and proudly stated, “I started all of this!”

 

Another caregiver featured in “What to Do about Mama?” also opened up her home to her mother-in-law. As “Katie” reported on page 172:

“My mother-in-law was living in a 55+ high-rise apartment with no assistance. She was legally blind. She began to have frequent falls and would call the fire department to be lifted. My husband was making frequent visits to her apartment, a one-and-a-half-hour’s drive away. The apartment management stated she was no longer eligible to live within their guidelines because she was unsafe and needed a higher level of assistance. My husband and mother-in-law discussed the options. She had the choice to move to assisted living, or to utilize her finances to add a handicapped-accessible living area onto our home, which was what she opted to do. We built a large living area with a handicapped bathroom that extended off of our existing family room so we could provide the assistance she needed.”

It’s important for seniors to have their own space, and separate quarters are preferable, when possible. The article below discusses “aging in place” and ways to make it possible.

Note: Ironically, Katie is now in a nursing facility due to a traumatic brain injury suffered during surgery. She requires 24/7 care. Her family is exploring ways to bring her home so that she can live in the addition previously built for her mother-in-law.

Making homes senior friendly growing trend as parents move in with kids or “age in place” by Carolyn Kimmel | Special to PennLive The Patriot-News, May 25, 2014

Kate Adams is a trained professional chef, but these days she’s busy cooking at home – for her husband and kids and for her mother, who is living with the family on a semi-permanent basis.

“I’m the typical sandwich generation,” said the 47-year-old Shiremanstown resident. “We’re still trying to figure out how things are going to go and what will be the next step.”

Adams’ parents have a house in Seattle, but after her dad died last fall, her mother spent the winter with her in Shiremanstown. She was due to go back home next month, but she suffered a small stroke several weeks ago that left her with general weakness and some facial paralysis.

“We’re thinking very seriously about the way to make the relationship we have sustainable for as long as possible,” said Adams, who has turned a front room of her house into a bedroom for her 84-year-old mother.

Aging in place, the term that refers to seniors staying in their homes rather than moving to a nursing home, is growing in popularity.

“Statistics show only 5 to 10 percent of seniors end up moving into a facility,” said Matthew Gallardo, director of community engagement and coaching at Messiah Lifeways in Mechanicsburg.

“It’s very difficult to bring somebody into your home to live, but it’s a wonderful option if you can do it,” said Wendy David, executive vice president of the Home Builders Association of Metropolitan Harrisburg.

“Many parents are happy to invest the money into their adult children’s homes instead of into a nursing home,” said builder Jim Mirando

Several options for “Aging in place”

Knowing that her current arrangement isn’t ideal, Adams and her husband are looking into the possibility of adding a modular addition to their home through the services of CareSpace, a Mechanicsburg- based company dedicated to helping people age at home.

“Sharing our lives but having our own dwelling makes a lot of sense to me,” Adams said.

CareSpace owners Brad Hakes, Michael Weaver and Don Steele know firsthand the challenge that Adams faces; they have all been in the caregiver position for aging parents.

“Many people can’t afford to go to a long-term facility so their children – people in the sandwich generation – are left trying to raise their own family and care for their parents in their home too,” Weaver said. “It’s a feel-good thing for both cared-for person and the caregiver to let them stay at home.”

The two-year-old company offers remodeling expertise and something new for this area – the option of adding a modular unit onto a home that can be removed once it is no longer needed.

“The advantage of a modular addition is that it can be added on quicker with less mess and fewer inspections and it can be removed later when it’s no longer needed,” Hakes said.

Some municipalities have zoning ordinances that may require a variance or special permission before the homeowner can proceed, however. CareSpace may eventually offer free removal of the modular units and then revamp them and offer them at reduced cost or no cost to others who need them temporarily, Hakes said.

“If someone has moved a parent into their home and the person passes away in the guest bedroom, there is always that memory of that room being where mom or dad was and that can bother people,” Gallardo said. “A modular unit has the advantage that it can be removed and so that room isn’t there to walk past all the time.”

There are pockets of the country where modular additions are commonplace, Gallardo said.

David said she doesn’t know of any other companies in the midstate that offer modular units. Some of the association’s members, however, have become certified Aging-in-Place Specialists through the National Association of Home Builders. The program focuses on technical, business management and customer service skills to serve the aging-in-place customer.

Jim Mirando, president of Excel Interior Concepts & Construction in Lemoyne, took the certification because he has always been interested in the aging-in-place segment and he sees it growing as baby boomers age.

Remodeling now for later

“Some people want to make modifications so mom and dad can come live with them,” Mirando said. “But some younger people are realizing that, if they like where they live, it makes sense to make the doorways wider, eliminate the barriers and put in some attractive grab bars in the shower now for their own use later.”

Other common adjustments include adding a full bathroom on a first floor, putting in ramps and stair lifts, changing doorknobs to levers and including a shower with a seat, he said.

CareSpace offers appliances with safety and accessible features such as induction coil stoves and roll under kitchen sink and work space as well as monitoring systems to manage medical status, medication taking and communication in the home. The company will also help facilitate a client’s move, including property appraisal, enhancing curbside appeal of a property and physical help with the move.

Whether adding a modular unit or making additions, the price tag can run upwards of $50,000, but, as David said, that’s still cheaper than nursing home care. According to the AARP, the average annual cost for nursing home care is more than $50,000.

“Many parents are happy to invest the money into their adult children’s homes instead of into a nursing home so that they can live comfortably and close to family and then that space can be repurposed down the road,” Mirando said.

Resources growing for an aging population

The need for information and resources related to aging in place is expected to increase. With about 10,000 people turning 65 everyday, 45 percent of homeowners will be age 55 or older by 2020, according to the National Aging in Place Council.

“A lot of people look at the older stage in life as a time of sadness and loss, but we’re trying to change the conversation. Yes, there are those who have health issues or other issues that make this a challenging time, but there are many other people who savor the idea of growing older because they have escaped the rat race and can focus on acquiring a new hobby or passion,” Gallardo said.

When Messiah Village changed its name to Messiah Lifeways and broadened its mission two years ago, the community engagement and coaching program was born for this group for people, Gallardo said.

“It’s combining social work, counseling and being an advocate for people who don’t know where to start. People who are facing issues of aging – either themselves or a loved one – don’t know the issues, the resources and services because they’ve never needed to know before,” he said. “We want to help people look at aging as a positive thing where they can still have a purpose and a positive attitude about what’s next in their life.”

Messiah Lifeways provides non-medical homecare to help people stay in their homes and offers adult care programs and a respite program that allows caregivers to leave a loved one for five to 30 days while on vacation or just in need of a break.

“To help people stay in their homes may seem counter-intuitive to what we are, but we just want to help people be where they want to be,” Gallardo said. “For more and more people, that’s at home as long as possible.”

Caregiving: Should I quit my job?

I saw a good article today on Penn Live, Harrisburg, PA, entitled “Measure financial impact of quitting job to care for mom: Linda Rhodes.” See: http://connect.pennlive.com/user/lrhodes/posts.html. The article rang true because this is what I did to take care of my husband’s mother in our home.

Linda Rhodes discusses factors that need to be considered before quitting a job to provide elder care, number one being the financial impact. She cites the MetLife study of Caregiving Costs to Working Caregivers, which puts the total financial impact of elder care on the individual female caregiver in terms of lost wages, Social Security and pension benefits at $324,044.

These numbers must be based on averages—I certainly don’t know precisely how much we were financially impacted by my quitting my job. We did have a financial agreement with my mother-in-law (and agreed to by my husband’s siblings) to cover the loss of my income—which was essential to our cost of living. I’m sure the agreement did not cover the full financial loss, but we felt that it was fair, and that this was something we could do for his mother. See my book, What to Do about Mama? p. 8 for details.

Many of the other issues that Linda Rhodes addresses also appear by example in the book.
• Caregiving is a family affair:
WTDAM Family Involvement and Support p. 55
WTDAM Caregiving Contracts p. 61
• There are all kinds of ways you can help:
WTDAM Deborah’s Story p. 98
• Other options:
Reverse mortgages WTDAM p. 144
Caregiver Contracts (and elder care lawyers) WTDAM pp. 140, 143, 145
• Family Medical Leave (FMLA) WTDAM pp. 144, 169
• Long-term care insurance WTDAM pp. 45, 143, 144
• Inheritance issues
WTDAM discusses sharing responsibility and inheritance “equally” p. 149.

What to Do about Mama? A Guide to Caring for Aging Family Members, a collection of caregiving stories written by caregivers for caregivers, also addresses aspects such as: The emotional journey; Impact on the family; Sharing responsibility; Managing finances; Maintaining dignity; and so much more.

Barbara Matthews

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