Caregiving: Facing the factsPosted: September 28, 2021 Filed under: Assuming Caregiving Responsibilities, Emotional and Physical Challenges, Financial Considerations, Impact on Family Relationships | Tags: caregiving plans, eldercare, family cultures, Pamela Wilson, The Conversation Project Starter Kit Leave a comment
As I began to glance at Pamela Wilson’s Sep 22, 2021 Podcast: Hard Truths About Caring for Aging Parents – The Caring Generation® the hard truths started jumping out at me right and left. I had learned about many of those hard truths the hard way—by first-hand experience
Hard Truths About Caring for Aging Parents – The Caring Generation® (pameladwilson.com)
In this blog post, I will identify some of those hard truths and then share how they impacted my own caregiving experience and how I anticipate they will impact me and my family in the future.
- Decide how much interaction you want with your parents throughout your life. The decision to remain living in the same town as your parents or move away affects caregiving responsibilities later in life.
This decision is not always yours to make. Both my mother and my husband’s parents chose to move away from us when they retired to Florida. My mother and my father-in-law both died suddenly; there caregiving needs were never very great. My mother-in-law, however, had a goal of living to 100 and did her best to accomplish that goal, despite having a number of serious health conditions. When she became unsafe living on her own, she moved closer to us. My son and two daughters were all married with families, but they always found time to be supportive of their grandmother. When her caregiving needs became much greater, she moved into our home with me as her primary caregiver. My children continued to be supportive. (My mother-in-law died just short of 90.).
Although my husband chose not to move away from our children, our older daughter and her spouse decided to relocate from our hometown when their kids were old enough that they no longer needed as much family support. Since then, she made it clear she does not intend to be a caregiver. Her younger sister thanked me for being such a good example when I cared for her grandmother. I certainly encourage the children to be supportive of each other when the time comes that we may need some help.
- Be aware that life cycle transitions affect the timing and care of aging parents. Few children expect to spend their retirement years caring for aging parents. Still, many retired adults become caregivers—if not for a spouse, then first for aging parents. Caregiving responsibilities often pass from one generation to the next. Although some families may believe in the responsibility to care for aging parents—is there another way to make sure parents receive care and you are not the only caregiver? There isn’t one right or wrong way, but one solution is for families to think about caregiving differently, from a whole-family perspective that take lifecycles into account: having and raising children, caring for aging parents, caring for a spouse, and caring for the caregiver.
- Family culture has a strong impact on how families handle the issue of caregiving. Is the family individualistic, believing in self-sufficiency or collectivist, setting aside individual achievement to work toward the good of all in the family? Does the family talk openly about the unpleasant realities of life and death? Some elderly parents may refuse to talk about legal planning or burial plans, whereas some adult children find talking about the death of a parent too emotionally traumatic. A family generally benefits if they can discuss sensitive topics openly as a recurring topic instead of a subject of hesitation and disagreement.
This was one of the biggest challenges when I was my mother-in-law’s caregiver. As one sister stated, “We never talked about anything. We just moved on.” When we came to the point that I was coming to a point of resentment because of their comfort with my assuming the role, which diminished their need for sacrifice, I forced the issue by insisting on a family meeting and requesting greater shared responsibility. Although that eventually led to more involvement, it also led to hard feelings that still exist ten years after my mother-in-law passed away. Setting boundary lines increased their participation and helped rid me of resentment, but I also think that it increased theirs—but there are times that difficult decisions must be made in order to avoid even greater consequences.
- Caregiving and care costs affect family income. It’s important to have conversations about the cost of caregiving ahead of time. Potential caregivers need to consider how it will impact their educations and careers. If you don’t talk about caregiving ahead of time, you will find yourself learning after you are embroiled in the role. Often families move in together to provide care for an aging parent with the thought of saving money. Too frequently, however, when a son or daughter gives up their job to be a caregiver, they become financially strapped. Sometimes caregiving appears to be an opportunity to escape from a job or a boss you hate.
Because I quit my job when my mother-in-law moved into our home, she paid the mortgage (equitable to the cost of her apartment in the independent senior living facility where she had been living) because that is what my salary had covered previously. She also named my husband as her life insurance beneficiary to compensate for the loss of social security and pension monies from my early retirement. Although my husband’s siblings had agreed to the arrangement ahead of time, it did not seem to settle well with them when the estate was settled.
- Caregivers often give up or trading parts of their lives to care for aging parents. Should you? For how long? The cost is great when you were the only person to step up.
Today, as I age and my health declines, I often feel that I squandered the last best years of my life as my mother-in-law’s caregiver. At those points my counterpart sister-in-law’s comment comes to mind: “My priority is my children. I am only a daughter-in-law.” What to Do about Mama? p. 20
- A lack of planning affects family relationships. When there is no planning because the topic of caring for aging parents is something no one wants to talk about, unpleasant and unwanted decisions are not avoided. Caregiving becomes a process of action and reaction that elicit a response only when serious concerns are manifested, or a crisis moment occurs. Ripple effects are then created that affect every generation in the family.
A few years ago, both my daughter-in-law and my son-in-law’ mothers were diagnosed with cancer. The first family spoke openly of the diagnosis. She opted not to undergo treatment and after five months, passed away.
“There was all this anticipation of need when the diagnosis came, but that need did not actually manifest itself much until the last few weeks of my mother’s life. She was fortunate to live comfortably until then, and was indeed in decent enough shape, that she was still making coffee for my dad every morning, up until those last few weeks. Our help for her was largely emotional support and keeping true to her wishes of spending as much time with family as she could. My mother waited until she’d checked the last items off her “To Do” list—a granddaughter’s birthday, a dance recital, and Dad’s hemorrhoid surgery—and then she stopped eating. She passed away on Father’s Day, surrounded by her husband and children who loved her so.” What to Do about Mama? P. 280
When I offered my son-in-law a copy of “The Conversation Project” which encourages dialogue between parents and children, he was angry with me, calling me “insensitive”. His mother opted for treatment, but sadly, the result was the same. Without going into the details, I think it would be accurate to say that her experience was in many ways, quite different that the one described above.
- It’s never too early to make a plan. Consider how caring for a parent will affect you, your marriage, your family, and your career. There are times when you must make difficult decisions in order to avoid even greater negative consequences.
I found from personal experience that Caregiving isn’t a short-term project. It can go on for a year, three, five, ten, twenty, or more. If you are proactive about making choices for on-going care you may avoid the caregiver burnout and frustration—the sources of emotional stress that can cause one’s health to decline. I know it did for me.
Post-Caregiving Déjà VuPosted: June 11, 2021 Filed under: Aftermath of Caregiving, Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Financial Considerations, Impact on Family Relationships | Tags: 24/7 Caregiving defined, Caregiving Commitments, Pamela Wilson, The Caring Generation Leave a comment
In regard to the June 2, 2021, Caring Generation Podcast—Taking Care of Family: Living for Someone Else—by Pamela Wilson–when I listened to this Podcast, I checked all of the following off as having had a significant impact in my own 24/7 caregiving experience. Supportive examples from What to do About Mama? are in blue.
24 7 Care For Elderly – The Caring Generation® – Pamela D Wilson
What does 24/7 care mean?
- The individual in need of care may be at risk of injury or other safety concerns if left alone for any time during a 24-hour period.
- The term 24/7 care is often first heard after an elderly parent is either hospitalized, or in a nursing home for rehabilitation after a serious injury or health issue.
Mom nearly collapsed twice Monday night while I was helping her from the bathroom to the bedroom. I just could not physically handle her anymore. Normally I become highly focused when there is a problem to solve, but this time I felt at a loss about how to proceed. I called the doctor on his cell phone, and he instructed me to take her to the ER. He also said that my mother-in-law was probably moving beyond my ability to care for, and that we should consider placing her in a nursing home.An Unremarkable and Imperfect Grandma, (my memoir) p. 414
Goal upon release:
- If a parent has been living alone at home, the individual’s goal or the family’s wish is usually for a return to independent living.
When Mom was discharged, she returned to the retirement facility. The day after Thanksgiving she fell in her apartment, resulting in another trip to the emergency room. She had broken her pelvis again, this time in two places on the other side, which resulted in another hospital stay and another nursing home admission for rehab. Mom was discharged after two months and returned once again to her retirement home in early 2007. However, this time David and I informed Mom and his siblings that we were not going to repeat this process if she was injured and debilitated once more; something had to be done to put an end to this vicious cycle.What to Do about Mama? p. 11
- Parents often deny they need “help” because the term can have a negative connotation when viewed as meaning “incapable of self-care”.
- The ability to return to independence can be vague in terms of time and ability level.
Caregivers sometimes begin by providing support in such areas as yard work or home repairs, followed by assistance with IADLs: telephone communication, housekeeping, laundry, food preparation, transportation, and managing medications and finances. Perhaps a greater sense of dependence involves the need for support with ADLs: bathing, dressing, grooming, ambulating, transferring, toileting, and feeding. The list of caregiving tasks grows and grows; the specifics are customized to each individual situation. When I was no longer able to care for my mother-in-law because of my knee replacement surgery, I wrote a job description for our nephew, which, in addition to the above-listed responsibilities, included the following tasks:
*Maintain an updated medical history to take to all doctor appointmentsWhat to Do about Mama? p. 162
*Maintain hearing aids; help to put them in
*Perform wound care
*Order medications, medical supplies, and equipment
*Order incontinence products
*Take to hair and nail appointments
*Provide opportunity for recreational activity
*Schedule and direct help–aids and hospice personnel
A serious talk is needed to determine:
- What level of independence necessary to return home?
- What efforts will need to be made?
- How much involvement and commitment will be required of caregivers?
- Will your parent commit to following doctor’s orders? Will he/she go above and beyond to establish habits that support better health and more physical activity?
We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving – which now included hands-on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the wheelchair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities – was just more than I could handle in my current physical condition.What to Do about Mama? p. 434
Options to be explored:
- Paid in-home caregivers
When the Aging care manager outlined the specifics of the waiver program’s “Services My Way” plan, I was floored. It provided more than I had dreamed in my wildest imagination: A 24/7 service provider; expensive equipment, such as an electric Hoyer lift, a customized wheelchair, and a combination shower wheelchair-commode; and environmental modifications, including ramps, laminate flooring, and a handicapped-accessible bathroom modification with a wheel-in shower chair.What to Do about Mama? p. 314
- Moving to a care community.
I accepted more responsibility as my parents’ conditions worsened. Eventually, my mom convinced my dad they should move to my city to end the last-minute emergency flights for me and allow me to keep closer tabs on their situation, including help arrangements. I chose a continuing care retirement community (CCRC) near my house, and it was the best decision for them and for me. My mother called the shots on the move, and of course, I agreed. Moving them to my hometown was the biggest change in my caregiving situation, and it certainly did ratchet up my involvement and time commitment.What to Do About Mama? From Marianne’s Story p. 98
- Relying on family caregiving
Boundaries to be set:
- As the caregiver, what level of time or money you can you commit?
Secondly, I was a caregiver for seven years. 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. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.What to Do about Mama? p. 2
If care becomes permanent, what will be the next steps taken to meet increasing needs?
Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? p. 252
A problem to avoid:
- Caregivers contributing to the situation by becoming indispensable. Be aware that each hospitalization or nursing home stay opens up another point for decision-making since escalating needs require new approaches.
She made comments such as, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.”
“I understand that you are that you are apprehensive of change and what it will be like for you living at Shelley’s. I say with confidence that Shelley is very capable and resourceful and will see that you are well-cared for. And after all, she is your daughter.”What to Do about Mama? pp, 32 & 35
A principal to follow:
- Establishing equal participation in care. This is essential so that that caregiver does not become responsible for taking on total responsibility for a 24/7 care situation.
Develop a “contract of expectations and commitments that everyone understands, agrees to, and signs off on.What to Do about Mama? p. 255
How many of you have been inundated with a show of hands?
Compensation for CaregivingPosted: July 10, 2020 Filed under: Financial Considerations | Tags: Aging in Place, Area Agency on Aging, Caregiver Space, Caregiving Contracts, Compensation for caregivers, Cori Carl, Financing Caregiving, Personal service agreements Leave a comment
See the Caregiver Space article “Can I get paid to be a family caregiver?” by Cori Carl: https://thecaregiverspace.org/paid-to-be-a-family-caregiver for helpful and comprehensive information about options for paying caregivers. Programs vary state to state and are, in general a work in progress. That is not to say you shouldn’t bother—it is worth you effort to explore what is available—and a good starting point is your Area Agency on Aging.
The following excerpts are included in the chapter titled “Finances” in What to Do about Mama?
One means of accomplishing “Aging in Place” is through a Personal Service Agreement, or Caregiving Contract. The agreement provides family members with compensation for quitting a job to take on the responsibility of caregiving. It recognizes the sacrifice of family members who give up income and acknowledges the astronomical costs of assisted-living facilities or hiring in-home help. Because the contract is a legal document, it is advisable to hire a lawyer to draft it or advise you about the contents.What to Do about Mama? p. 209
Therefore, the disadvantages are:
• Legal expenditures
• The time entailed for detailed recordkeeping
The advantages are:
• Financial compensation
• A legitimate way to spend down assets
• Transparency for all family members
• The senior citizen maintains a sense of control over his or her life
• A lessening of the senior’s feeling of being a “burden” to the caregiver
Families can, of course, agree upon other reimbursement options—as long as they recognize that the sharing of expenses with the care receiver and/or other family members:
• Is “insurance” to cover the increasing level of care needs (by avoiding more expensive options: home-health care, assisted living, and nursing homes)
• Minimizes the stress on the caregiver’s personal finances It is advisable, however, to secure some type of legal agreement to avoid future problems. Remember, too, that if you have financial control, keeping your family informed decreases their tendencies toward doubt and second-guessing.
Some caregivers choose to quit an existing job to provide care. That option may be more feasible if a Personal Service Agreement or Caregiver Contract is established.What to Do about Mama? p. 214
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.
Don’t forget–research and explore your options.
Thoughts about DenialPosted: March 16, 2020 Filed under: Aftermath of Caregiving, Emotional and Physical Challenges, Financial Considerations, Impact on Family Relationships, Miscellaneous | Tags: attitudes about caregiving, avoiding caregiving, avoiding-crisis-mode, caregiving denial, denial, Information folders for family caregivers, proactivity and preparation for caregiving, procrastination and caregiving, viscous cycle of caregiving 2 Comments
I asked on my Home Page: Did you ever have a major life experience that made you say (or even just think), “I should write a book”? Well, I did. The Caregiving Experience. I kept a journal; I saved e-mails written to family; I had a veritable glut of relevant information and experience. So, what did I do with all this stuff? I wrote What to Do about Mama? The book was released November 2013, and within a couple of years I was thinking:
- Young people don’t think they need it yet.
- Caregivers are too darn busy.
- Post-caregivers just want to “put it all behind them.”
Believe me, I get it. But these attitudes are a core reason for why caregiving becomes one big viscous cycle. It usually takes a crisis to pull us out of the procrastination, avoidance, and denial mode. I want to tell you—that just ain’t no fun.
The 2nd edition of What to Do about Mama? has now been released. There’s a new chapter, The Aftermath of Caregiving, which deals with a number of these issues.
There are many steps you can take to be proactive about preparing for future caregiving needs. Many are discussed in the book. Here is just one:
- The folder has the relevant information our children (or surviving spouse) will need.
- Table of Contents: Financial (accounts, expenses, insurance, taxes and payments; Legal (information and paperwork); Property Maintenance (home and vehicles); Medical Information (insurance, medical history, wishes and preferences for end-of-life care); Other (information to access accounts, an inventory of belongings with our children’s and grandchildren’s preferences noted).
- The Conversation Project is a conversation starter, but it also contains our values, as well as our preferences for life-decisions and care. It is in the medical section.
- Our will and directives are also completed, but are in a separate file.
Denial of Caregiving:
Three articles of interest.
Daily Caregiving: 3 Ways to Deal with Family in Denial About Seniors Needing Help
According to the Mayo Clinic, “Denial is a coping mechanism that gives you time to adjust to distressing situations.”
Why would someone be in denial?
- Asking someone to change how they see your older adult threatens their whole world. That’s usually why people fall back on denial.
- It’s safe and comfortable to pretend that everything is fine and nothing is changing.
- For some, denial is a subconscious way to ignore the fact that their parent or spouse is declining. For others, it’s a way to avoid taking on caregiving responsibilities.
A Place for Mom: 13 Dangers of Caregiver Denial
Denial is a normal human emotion. No one wants to confront diseases such as Alzheimer’s for which there is currently no cure. Caregiver denial presents dangers that puts the caregiver at risk, as well as the care receiver. Elizabeth Lonseth, whose parents and parents-in-law were all diagnosed with memory impairment, is the author of “A Gradual Disappearance”. Elizabeth is up-front that it doesn’t matter how many times you’ve been through the caregiving experience—it never gets easy. But a little education helps, and the article presents some good pointers and survival tips to keep in mind.
- 7 Dangers of Denial for the Patient
- 6 Dangers of Denial for Family Members
Our Aging Parents: Are Your Elderly Parents In Denial? By Mike Gamble
This article questions whether what appears to be denial is really triggered by underlying causes, and that progress depends on understanding those causes.
- Pride — Fiercely independent, they simply don’t want to admit they can no longer do many of the things needed to live independently.
- Embarrassment — They are uncomfortably self-conscious because they can’t do things they used to do with ease.
- Ashamed — They are afraid of disappointing friends, family members and other people they admire and love because they are no longer capable of living independently.
- Fearful — They are afraid of losing their independence and/or their ability to function independently. Such as giving up driving
- Depressed — They look sad, talk less, never smile, are joyless, believe they are a burden.
- Powerless — They feel helpless — like they no longer have the power or ability to act to change their circumstances. They withdraw, become socially isolated.
- Core Identity — There’s nothing that leaves you feeling more powerless than losing your core identity.
This last list is really hitting home for me right now. I’ll save that discussion for another day.
An Optimistic Update: Katie’s Story, Part TwentyPosted: February 20, 2015 Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Financial Considerations, Katie's Story | Tags: building-block, caregiving-book, caring-for-disabled, confidence, faith, funding, goals, Katie, respite, success Leave a comment
For 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.
The 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.
With Faith, I hope to believe:
THIS PLAN WILL SUCCEED!
Caring for Katie at Home—One Big Roller Coaster Ride: Katie’s Story, Part EighteenPosted: January 30, 2015 Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Financial Considerations, Katie's Story | Tags: caregiving-book, environmental modifications, funding-for-craregiving, Katie, mitigation, pain-management Leave a comment
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.
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.
Caregiver ContractsPosted: July 6, 2014 Filed under: Financial Considerations, Impact on Family Relationships | Tags: attorney, binding, caregiver-contract, caregiving-book, commitments, family-meeting, legal protection, notarized, service-agreement, signatures 1 Comment
On the AgingCare.com website, saugo5774 asked the following question:
Do I need a caregiver agreement between me and my Mom?
Mom is giving me a check each month to care and support her.
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.
Aging in Place: Moving in with the KidsPosted: May 30, 2014 Filed under: Assuming Caregiving Responsibilities, Financial Considerations | Tags: aging-in-place, caregiving-book, in-law-quarters, Matt Gallardo, Messiah Lifeways, modifications, modular-unit, moving-in, remodeling, repurposing, sandwich-generation 1 Comment
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.
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?Posted: February 12, 2014 Filed under: Financial Considerations | Tags: caregiving-book, job 1 Comment
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.