A Guide to Caring for Aging Family Members

Archive for May, 2014

An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”

An interview with the authors of "What to Do about Mama?: A Guide to Caring for Aging Family Members".

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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.”

Do Family Caregivers Feel Valued?

Carol Bradley Bursack’s article, “Family Caregivers Still Undervalued by Many” hit a chord with caregivers, myself included. See AgingCare.com for the full article. http://agingcare.com
Home » Caregiver Support » Emotional Wellbeing » Articles » Family Caregivers Still Undervalued By Many

As Bursack points out:

  • We live in a society that tends to value what we do over who we are. If what we do isn’t highly paid or well understood, many people often brush it off as unimportant. Thus, one of the most important jobs in our society today – that of being a family caregiver – is all too often undervalued by people who don’t understand. They couldn’t relate to that kind of life and didn’t regard caregiving as a “real” job.
  • As millions of boomers’ parents continue to age, more people have been called on to be family caregivers. However, the general public still tends to lack a true understanding and respect for what caregivers do.
  • A MetLife study, as reported on NPR’s “The True Cost of Caregiving,” says that the kind of care family caregivers provide would cost about $42,000 a year, if it was provided by paid workers. A private room in a nursing home averages more than $87,000. Costs vary, and have risen since the original study was updated in 2011.
  • We shouldn’t have to justify our choices to care for our adult loved ones. Caregiving is about far more than money.
  • Former colleagues, potential employers and even old friends often don’t understand why we frequently need to take substantial time away from our work; generally in the form unpaid leave or extended vacation time. It’s either that, or we quit our jobs. If we quit a paying job, we are often treated “like we took a long vacation.”
  • Caregivers would like to have people understand that with or without outside employment, caregiving is a job.
  • Caregivers often say, ”No job for which I’ve received a regular paycheck has ever compared in intensity or hours caregiving.” As with many difficult life situations, only those who’ve walked a similar path can understand on the deepest level.

Caregiver Comments (abbreviated):

LILDEB:
Carol, great article however, the only ones reading these are those who are the “caregivers.” I think we need to get more caregiving education to the public. I recently went off on a family member when he mentioned that, “Others have to go back to work.” That was it! That was all it took for me to blow a gasket! However, I have a job, a job 24/7 without pay, a job that doesn’t just stop because I am at home. Just maybe, through education, caregivers will be out from the dark and get the respect from the public as well as from family members.

We enter into care giving out of love or as a noble gesture without knowing the toll it is going to take on our lives, health, finances. I have learned the hard way that there is a LIMIT to what a human being can do or what we should expect of ourselves. And there is NO SHAME is saying I have had enough or I cannot do this anymore—especially when your own health fails.

I wish there were more information in the media to educate others about the important JOB caregivers are doing. There should be a pamphlet made BY CAREGIVERS for potential care givers WARNING them of all the hazards. Most of us go into this with blinders on and looking through “rose colored glasses……….”

STANDING ALONE:
Thank God for this article. You’ve nailed some of my own confused thoughts dead on. I’m too tired to write much, but to anyone who ever wants to judge me too harshly, come live my life.

CLH777:
This article hits home to many who struggle every day to be understood in a world that venerates high paying, high profile, people.

MARSHA530:
I have to say I was surprised at this article. Since becoming my grandma’s caregiver I have had nothing but praise and support from, not just friends, but complete strangers I’ve just met when I tell them what I do.

SISTERS2: (Caregivers) deserve more rewards than can ever be bestowed upon them. I’ve come to learn that it doesn’t matter what anyone says or thinks about the way I cared for “the only mom I ever had.” I did the best I could with what God handed to me and that’s all that matters.

OLDCODGER2: As with most things in life—whether it be birth, marriage, divorce—it is practically impossible for someone who has not actually experienced it to truly understand the dynamics. It’s the same with caregiving. There was no way to know how it felt until I did it. And it does not always feel good. My own charge—my dear MIL—feels and tells others that I “have it made…….”

SUMMER1900: Great article Carol! What I’ve come to realize through caring for my father 24/7 (with the help of my sister) is that the difference between a full time job say…40 hours a week and being a full time caregiver…168 hours a week is 128 hours. It’s more than a full time job. Add on the fact that a caregiver is responsible for another human being and all that involves…washing, dressing, feeding, toileting, medications, doctor appointments, entertainment and keeping one safe, day in and day out. You begin to live the life of the person that you are caring for. Add in the responsibility of home…cleaning, cooking, laundry, maintenance, lawn care, snow removal and bills. A caregiver wears many different hats.

WUVSICECREAM: I would like to point out a common situation in conjunction with this topic. Most caregivers need a backup plan for future care needs, or in the possible case of themselves getting ill or their own need of medical attention. So along with daily care needs being met, they have to find resources and navigate and negotiate through a maze of “what if’s” and prepare for anything that may cause a crisis situation, have to with no choice worry about all of this as well, and just do it all (usually alone) however possible or impossible. I have also witnessed myself and from knowing and communicating with other caregivers, that this should be considered a fact … that the people who do not cooperate or even extend a simple thank you, are usually the people who run when the situation is critical, but when everything is in order due to the caregivers efforts the runners come back like your nearing the finish line and complain about why the caregiver did this or that. I know one thing… all I ever asked for was cooperation, understanding and two words, “Thank You.”

HANK4422: If I had it to do over again I’d fake my death, change my name and flee to another country! I’ve found many of the people who are critical have already made up their minds and all the “explaining” just falls on deaf ears. This is one of those “dirty jobs”…

GLADIMHERE: I found a great website this morning when searching for states that permit family caregivers being paid. This link will take you to a document that provides contacts within states that permit the payment for family caregivers.

NICHOLAS29: Excellent article. More people need to read it and I plan to share it with those who do not understand what I do for my Mom. I prefer to have her AT home rather than IN a home. I get criticized that what I am doing is not contributing to the economy like an office position. Perhaps health insurers should contribute to the expenses of a caregiver because if the caregiving were to cease the patient may incur expensive care in a hospital or rehab center. But they do not want to listen to logic.

 

MY RESPONSE TO CAROL’S ARTICLE AND CAREGIVER COMMENTS:

Carol’s article, “Family Caregivers Still Undervalued by Many” certainly resonated with many of us! In response to LILDEB’s statement, “There should be a pamphlet made BY CAREGIVERS for potential caregivers WARNING them of all the hazards—I did exactly that. “What to Do about Mama?” was written for caregivers by caregivers. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving. The book deals with the issues you have all addressed—and more. For example:

  • Like LILDEB, I learned the hard way that there was a limit to what I could do, and had to say “enough” when I required knee replacements.
  • Like Marsha530, I received accolades from friends, acquaintances, and strangers.
  • SISTERS2’S comment that caregivers deserve more rewards than can ever be bestowed upon them reminded me of the remark I often heard, “Your reward will be in heaven.” Do you think it is a possibility that grandchildren or in-laws are shown a little more respect from the public than the “daughters” who are filling a more “expected” role?
  • But then again, like OLDCODGER2, whose MIL feels and tells others that she “has it made,” my MIL said, “Everything is for your convenience!”
  • To WUVSICECREAM, who pointed out that “the others” complain about why the caregiver did this or that—remind them of the ground rule: “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”
  • And finally, to GLADIMHERE and NICHOLAS29, who both brought up some of the financial aspects of caregiving: One means of accomplishing “Aging in Place” (at least here in PA) is through a Personal Service Agreement or Caregiver Contract. The agreement provides family members 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. So sometimes, with digging, you CAN find a little bit of logic out there.

Barbara Matthews

Egads! I’m the Pokey Parent!

See Susan Diamond’s post:  Slowed-down Aging Parents–What I never realized.Pokey

Oh no! My husband’s and my parents are all gone–now this applies to ME! I especially identify with:

1) There’s a persistent worry about forgetting, so there’s added urgency–the feeling I must take care of a thing right away before it’s forgotten;

2) This causes me to double-check myself to make certain I did–or will do–it right; and

3) I don’t multi-task well because multi-tasking diverts concentration and can easily lead to forgetting.

There’s also the fact that I’m retired and don’t HAVE to rush about anymore.  So–I guess I am now the “Pokey Parent.” Scary huh?

 

 

 

Again, Quality vs. Quantity of Life

In an AgingCare.com article, May 08, 2014, Coy F. Cross discusses “Quality or Quantity of Life?”   Visit http://www.agingcare.com
Home » Blog » Life as a Caregiver » Articles » Quality or Quantity of Life?

Another “hard talk” Carol and I had before her diagnosis with ovarian cancer was the need to balance quality of life and quantity of life. Both chemotherapy and radiation can have profound side-effects, some immediate, but gradually dissipating, others causing permanent damage.

How much quality of life are you willing to give up to live longer?

I remember talking with my dad, over his kitchen table, as he was considering high-risk bypass surgery to correct congestive heart failure. He was no longer able to fish or garden, two of his great joys in life. He asked what I would do and I replied, “If I could no longer do the things that brought me joy, I would have the surgery.” He opted for the surgery, had a stroke during the operation, and made his transition a few weeks later.

Carol and I talked about my dad and what we would do in a similar situation; we both agreed, “I would have the surgery.” So even after she opted for surgery and chemotherapy to treat her ovarian cancer, she always had the option, “if this becomes too painful or the residual effects take away my quality of life, I will stop the treatments.”

Discussing these difficult circumstances before the crisis arises makes your decisions and your acceptance easier when decision time comes.

My response:

Quality vs. Quantity of Life is very much based on personal value systems. There is not one “right” or “wrong” belief, and convictions on both ends of the continuum demonstrate personal strength. The topic is broached in my book, “What to Do about Mama?” Following is an excerpt from pp 159-160:

During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she was not cognitive, it would be obvious what step to take next (no treatment). He then continued by saying that since she was cognitively intact, decisions about treatment were completely up to her—the lady who opted to take every recourse available because she wanted to live to 100 and had stated, “I don’t want to miss anything.”

I recall another assessment I administered with a woman well over 90. She told me a story about her marriage. She had wedded a much younger man and had her only son later in life. It was ironic to her that her husband had preceded her in death. She said that her son was a widower and remarked that I reminded her of her deceased daughter-in-law. Later in the assessment, she asked me, “Are you married?” Afterward, when I was walking to my car, I burst out laughing when it suddenly dawned on me that she was exploring my status of availability for her son. I think it was important for her to know he was taken care of before she was ready to depart this earth.

And here is another reason one senior is motivated, just like the Energizer Bunny, to keep going and going and going . . .

Her mother hadn’t “planned” to live past 85. But once Patricia’s siblings began to compile a family history, she expressed the desire to see the work completed. It gave her satisfaction that her children, who hadn’t always gotten along, were cooperating on the project.

Conversely, I met other clients who lost their motivation to continue living. They stopped eating and were diagnosed with “failure to thrive.” This type of situation was often an enigma to the children and certainly put them in a quandary about decision making.

According to current medical standards, it is important to follow the individual’s wishes. I wonder, however, how many times people’s lives are extended not because of the parents’ choice, but because of the inability of children to let go.

At the end of his life, Marianne’s father had a stroke. But he was able to indicate that he didn’t want extraordinary measures. The family brought in hospice for his care.

Nathan’s sister, the nurse in the family, had trouble accepting the concept of eliminating anything that would prolong her father’s life.

Julie advises families to discuss—ahead of time—such issues as heroic efforts and sustaining life if there is little or no quality of life.

I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that “no extraordinary measures” be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.

Barbara Matthews

Moving In!

In “Me and These Men” May 5, 2014, MKC posts:

Five Tips for Not Losing Your Mind When Your Parent Moves In.

There are PLENTY of ways to lose your mind once your parent has moved in—but prior planning certainly does help.  I address this same topic in my book, “What to Do about Mama?” on pages 72-73 and 77-78.

Providing Care in Your Own Home 

As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown? 

But certainly, if this is the choice you make, be sure that you and your spouse or partner are as prepared as possible. Your home needs to be made safe and handicap accessible, with equipment such as grab bars and shower chairs. Throw rugs should be removed from walkways. It is best if you can provide one-floor living capability, which can be an extra challenge if there is no bathroom facility on that level.

Discuss how responsibilities will be divided among those living in the home, as well as those providing outside support. Don’t forget to talk about finances. Bringing your loved one into your home will put extra demands on your budget. Make sure you will have opportunities for respite and time for yourself; don’t “lose” yourself in the process of caregiving. 

Most importantly, consider whether your relationship is strong enough to handle the demands of living together. If you have problems historically, they will continue or even get worse. Even if you believe you have gotten along well, be prepared; there may be some surprises you just didn’t foresee. Keep all the household members in mind—are there personality clashes? Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress?  

If you opt to bring your loved one into your home, establish an open line of communication. Talk about and listen to expectations on both sides. It is so difficult to respect everyone’s roles when the parent-child lines become fuzzy. To encourage a positive and cooperative atmosphere in your home:

Designate a personal space for your loved one that is not too isolated from the rest of the household. Fill it with his or her belongings, collectibles, and mementos.

  • Talk about individual routines, and try to accommodate everyone’s needs as closely as possible without compromising your household and family values. Will you have enough time for other family members? If your spouse or children are required to sacrifice what they hold dear, the household climate will become a breeding ground for resentment and conflict. Remember that family support is vital if the living arrangement is to be successful.
  • Emphasize household customs, and solicit support for avoiding unneeded disruptions. Will you be able to maintain important lifestyle concerns such as employment, social life, and vacation plans? Are you prepared to make adjustments?

  • As a family, discuss what you each value and what causes you stress.

  • Set boundaries in the relationship, but make sure to schedule time together.

  • Help the care receiver develop new activities and friendships.

  • Encourage mutual respect based on communicating wants and needs, not giving orders. Stress the importance of being open and honest with each other. This is particularly difficult when your care receiver goes around you to complain to the “others,” which also sets the “others” up to second guess your actions. Direct communication is the key to avoiding misunderstandings. 

Barbara Matthews

 

Say what?

Say WhatClick on the link to see Joy Johnston’s article in “The Memories Project”  which discusses communication techniques to use in dementia situations.

Communication Strategies.

Inaccurate communication creates a lot of misunderstandings in many caregiving circumstances.  I would say something to my mother-in-law, she would reply (I thought appropriately), and then later it would be, “I didn’t say that.”  I couldn’t get a grasp on the reason:  Was she not listening?  Was she not hearing?  Was it the beginning stages of dementia?

I suggested that she reflect back to me with her responses.  For example, when asked, “Would you like a cup of tea?” that she respond, “ Yes, I would like a cup of tea.” instead of just “Yes.”    Not a simple skill for an 89-year-old to adopt.

When I took her to a friend’s birthday party at a restaurant, people took turns standing and making lovely comments about the birthday girl.  After we returned home, MIL admitted for the first time that she could not hear what anyone was saying, and that maybe she did need hearing aids.  (she disliked all symbols of “getting old.”)  Unfortunately, the adjustment was difficult, and although we did not give up on them, the aids never really helped much.

Not hearing accurately is very frustrating for everyone in the caregiving situation.  The communication strategies discussed in the article Joy Johnson shared in The Memories Project are applicable well-beyond the scope of dementia.

Barbara Matthews

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