An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors. http://www.agingcare.com/
My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?
I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.
I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”
I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,
“A productive family meeting 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.”
In your situation you have an extensive family, so finding consensus will be a challenge. I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy. Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps). If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.
If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need. The report can be made anonymously.
Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.
The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.
WTDAM (me again) comment:
Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.
As I said in my previous post “Belongings” (3-31-2014), “Dispensing with belongs collected over a lifetime is generally not an easy task.” Becky Monroe documents the emotionally wrenching process in her blog “An Only Child’s Journey into Parent Care.” (beginning with Finding Out Who Your Friends Are, 3-24-14).
Check out Susan Diamond’s perspective about downsizing on link below, and then note my comment about photographs.
My comment: Thankfully, my brother and I shared the task of going through my mother’s things. There wasn’t much family history left in her physical belongings. Our father died when we were teens; Mom had moved and downsized a number of times since then. She had her remaining things completely organized, something I think we both appreciated.
This is not to say we did not relive, regret, and grieve—mostly for what could have been, but never was. I took home the box of pictures, which remained packed away for another thirteen years.
When my mother-in-law passed away (after living with us for four years) my husband “inherited” another box of pictures. He divvied them up into five big piles—one for himself, one for his brother, one each for his two sisters, one for the trash.
I agree with what you said: “The most frustrating part was looking at photos of people with no names to identify them.” And also, as you did, I wondered: “What will children of today find in the way of photos when their parents are gone?” (since all the pictures seem to be saved by the gazillions on their various devices).
In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I have pledged that I will not leave my children the burden of my messes (such as boxes of pictures). Therefore, I spent a number of months making picture books to document the history of both sides of our family.
My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day. Up until the last half year of her life, she was a vital woman and a go-to grandma. She and her husband were married for nearly 44 years–two months less than I have been married to mine. He wrote her eulogy, a beautiful tribute to his wife and their marriage. The eulogy was hard for him to deliver at the funeral; he did it, but broke down. My 6-year old granddaughter sat beside me, my arm around her holding on tight. She cried when she saw her grandfather cry. My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.
Really, none of us “understands.” Sure we know that we all live, and then we all die. But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.
It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment. So I tried to express my feelings by telling her:
“I am thinking about…
how overwhelmed you must have felt at the seemingly sudden onset of your disease;
how difficult it has been for you to decide what path to take;
the strength of your convictions in deciding your course of action;
your incredibly difficult decision and the courage of your choice;
how you are living life on your own terms;
the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;
how much your daughter loves you;
how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;
how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”
And then, at a later date, when the end was drawing near, I sent:
“A Heartfelt Message”
You have given our family a precious gift—YOUR DAUGHTER.
Your kind and gentle nature lives through her.
You have instilled in her the values of love, patience and honesty.
And so it passes—from mother, to daughter, to granddaughter.
Strong women, all.
I can only hope that these words somehow helped. I think they are what I would like to hear.
Click on http://youtu.be/GfKS98UTjB4 to view a UCLA Health Webinar on “Surviving Caregiver Stress” by Linda Ercoli, PhD.
Every caregiver who watches the webinar will find something that resonates with their own unique caregiving situation.
Some of the points that resonate with me are:
- Caregiving stress is impacted by the length and the load of the caregiving experience.
I was caregiver of my mother-in-law for seven years, four in my home. The last two years were characterized by escalating physical decline in conjunction with increased caregiving needs. What had been an overall positive caregiving experience became unmanageable.
- Caregiver stress is increased when there are fewer uplifts (positive perceptions).
I had assumed my caregiving role as a means to “give back” and show my appreciation. When I sensed my mother-in-law’s air of resentment, the positive perceptions of the arrangement eroded.
- Caregiver stress is impacted by role changes.
My mother-in-law was fiercely independent. She could not accept what she perceived as a “relinquishment” of control, such as when I began to set up her medications.
- Caregiver stress is greater when there are perceived problems relating to the family, as well as the care receiver.
We called a family meeting to discuss our need for increased support relative to increasing needs. My husband’s siblings were defensive. As relationships diminished, stress increased. As noted above, when my mother-in-law felt her “autonomy” decreased, her “animosity” increased.
- Coping strategies include “doing for self” through exercise, nutrition, activities, etc.
When I took time for myself or looked for ways to meet increasing needs, I was accused of being selfish. My mother-in-law stated, “Everything is for your convenience.”
- Coping strategies include availing yourself of opportunities for respite.
When I utilized hospice respite, I was again labeled as “selfish.”
- Coping strategies include finding support.
I joined to a support group; it was instrumental to maintaining my sanity and making difficult choices.
- Coping strategies include setting limits.
When my sister-in-law said she could not have Mom for Christmas because there would be three dogs and a grandchild there, my husband told her we would have one dog and seven grandchildren—our “request” was not negotiable.
- Caregivers should be aware of escalating caregiver burden: exhaustion, medical problems, unrealistic expectations, poor relationships, the need to control an uncontrollable situation.
Providing my mother-in-law with ambulatory support became unsafe since I was now in need of bilateral knee replacements.
- Caregivers should plan and prepare to transition to other care models when the burden becomes too great.
Although she did not want to leave our home, my mother-in-law moved to her daughter’s home when I could no longer care for her safely.
A Caring.com article: http://caring.com/
How to Go on Vacation When Mom Needs You
Tips to Help Caregivers Plan for Time Away
By Melanie Haiken, Caring.com senior editor
You want to get away — everyone does, at one time or another. And with all the responsibilities you shoulder on a day-to-day basis, you need — and deserve — a break. (In fact, if you neglect to take time off to care for yourself, you’re likely to suffer from caregiver burnout, a very real problem.)
But how in the world do you take a vacation when you’re on call and on the spot taking care of Mom or another family member? It’s a dilemma that every caregiver faces, and there’s no question that it’s a tough one. However, there are ways to make sure your loved one is safe and comfortable while you get some much-needed R&R. It starts with determination: You need this, you deserve it, and you can make it happen. Then use these strategies, time-tested by caregivers like you.
- Prepare her ahead of time.
As far in advance as possible, start talking to your mother or other family member about your upcoming plans. Explain where you’re going and the reasons for your trip, and how much you’re looking forward to it. After that, frequently tell her how excited you are about your vacation; you might mention details as they develop to help her “see” your plans. Understanding that this is something important to you will help her balance her distress and “buck up” to accept the temporary change.
- Ask family and friends to pitch in.
No, it’s not always easy to ask for help, but delegating is one of the secrets to surviving the stress of family caregiving. If you’re worried that your mother or other family member is going to resist help from someone else, take these steps to get her on board.
- Let Mom have some say-so.
Talk to your loved one about whom she’d like to spend time with while you’re gone. Knowing the people she feels most comfortable with will help you choose which tasks to delegate to whom. And even if the people your mom requests aren’t available, you’ve given her some say-so, which will help her feel better.
- Break up the jobs.
Since these responsibilities are new to your supporters, it’s best not to overwhelm any one person with too much to remember. Make a list of what you do during a typical week, then next to each item list names of people or services who could take on that task. Grocery shopping? Perhaps a neighbor could do that for you. Driving to appointments? Another family member, friend, or member of your church is a good candidate, or you could set up transportation with a senior transport service in your area. Cooking? Premake some meals, then freeze in single portions and enlist a family member, friend, or paid caregiver to help prepare and clean up.
- Schedule companionship.
While getting the basics covered is top priority, you’ll also feel better if your mom has some regular visitors planned during your absence. (Does wonders for caregiver guilt, too.) Now would be a great time for that long-distance visit from your second cousin, or for your mother’s church group to take her out to lunch. A few weeks before you leave, spread the word as widely as possible that visitors are needed, and you’ll be surprised what materializes.
- Hire short-term help.
Most in-home care agencies can provide you with a personal care assistant for the short term; this is often known as respite care. Using an agency saves you the work of finding, hiring, and training someone, so it’s a great way to go in a pinch. To find an in-home care agency near you, use our In-Home Care Directory.
- Find respite independent living care.
You might be surprised to find out how many independent living, assisted living, and continuing care retirement communities in your area offer short-term room-and-board situations, or respite care. Not only does this option offer the ultimate in peace of mind, it also presents an opportunity for your loved one to experience what an independent living or assisted living facility has to offer. To find out which facilities near you have respite care arrangements, call your Area Agency on Aging or use our Assisted Living Directory.
Some thoughts about your article:
I agree that it is vitally important to schedule caregiver respite, and that it is best to plan ahead. Sometimes, however, there are last minute opportunities.
I was fortunate that I had a good friend who would plan a vacation and invite us to go along. She knew my husband and I were not proactive about doing this for ourselves.
Taking a respite vacation requires a lot of preparation.
Caregivers need to accept that respite-care-providers might not do everything exactly the same, and be willing to relinquish control.
On one occasion, when family could not provide respite for a last-minute request, we utilized nursing home respite provided by hospice. I was labeled as “selfish” for doing that. Later, hospice personnel stressed to family that respite is a service the organization provides because caregivers need the opportunity, saying specifically, “The decision for respite care is 100% the caregiver’s call.”
After my caregiving responsibilities ended, my husband and I took a trip. We were driving along when it suddenly dawned on me. “We just walked out of the house!” The sense of freedom was exhilarating.
Everyone has different values based on their different life experiences. After a childhood of “stuffing” my emotions, I learned to reject that approach to life and became quite outspoken. I will admit that this quality sometimes causes me difficulty.
I sometimes wonder though, as I plow head-on into talking about the topics folks don’t talk about, why people struggle so much with “verboten” subjects such as mental health, sex and dying.
Often, even doctors lack confidence and are reluctant to broach the topic of death. Therefore, there are bills being proposed in Congress that will provide monetary compensation from Medicare, Medicaid, and other health insurance providers for patients and doctors who agree to talk about advance care planning.
Rather than repeating what I have said before, I encourage you to check out my previous posts, which have various references to the subject and where they appear in “What to Do about Mama?”
Meanwhile, the article below is well-worth reading.
Home » Elder Care » End of Life & Hospice » Articles » Doctors and Patients Getting Paid to Plan…
Doctors and Patients Getting Paid to Plan for Death
Marie Botek, Editor-in-chief
June 05, 2014
Would you be more likely to outline your personal preferences for end-of-life care if you knew you would get paid for it?
A slew of new bills and recommendations are hoping to secure monetary compensation for both patients and doctors who agree to sit down and chat about advance health care directives—legal documents such as a living will, a do not resuscitate order (DNR) and health care power of attorney.
Two pieces of newly-introduced legislation—the “Medicare Choices Empowerment and Protection Act,” championed by Senators Thomas Coburn (R-OK) and Chris Coons (D-DE), and the “Personalize Your Care Act,” introduced by Congressman Earl Blumenauer (D-OR)—each contain a mandate to pay Medicare beneficiaries to outline their preferences for end-of-life care.
The Medicare Choices Empowerment and Protection Act instructs Medicare to give beneficiaries $50 for filling out a hard copy of their advance directives (or $75 for doing the paperwork online), while the Personalize Your Care Act would provide financial incentives for patients to review their end-of-life plans with their doctor every five years, or if their medical condition changes. Both bills have been referred to committee to await further conveyance.
At the same time, the American Medical Association (AMA) is soon expected to announce their recommendation that doctors who engage in advance care planning discussions with their patients be reimbursed by Medicare, Medicaid and other health insurance providers, according to The Pew Charitable Trusts.
The importance of end-of-life planning
About half of Americans over 60 have completed some form of advance directives.
Studies have shown that those who do outline a plan of action for their end-of-life care are less likely to die in a hospital and more likely to receive palliative and hospice care. The take home message appears clear: when aging adults take time to plan for their future, the goal of providing care shifts away from pure prolongation of life to enhancing the quality of life, however long it ends up being.
Unfortunately for the 50 percent without such guidance in place, their care is too often dictated by their doctors’ individual style and the typical practices of the facility where they’re receiving treatment, according to VJ Periyakoil, MD, Clinical Associate Professor of Medicine at Stanford University School of Medicine.
During the 2014 Meeting of the American Geriatrics Society, Periyakoil presented the findings of new study on how doctors view advance care directives. Overall, doctors in all specialties agreed that outlining end-of-life care preferences was an important step for elders to take. A whopping 88 percent of the physicians that were interviewed said they would sign a DNR for themselves, rather than undergo extreme life-prolonging treatment.
The doctors also claimed that knowing more about their patient’s preferences would give them greater confidence to make decisions regarding that individual’s care and such information would alleviate some of the worry over legal retaliation, should they limit that patient’s treatment.
Why docs don’t talk
Despite the widespread support of advance directives among doctors, there are a few factors that make end-of-life care conversations between physicians and their patients difficult.
For one thing, most insurance companies don’t pay for special appointments to discuss advance directives (though some do), and there’s little or no opportunity to squeeze in an extra conversation about such weighty issues during the typical 10-20 minute appointment window.
But not having enough time may actually only be a significant factor for a small fraction of physicians who decide to forgo having end-of-life care talks with their patients. A recent survey of doctors and nurses from the Mayo Clinic found a widespread lack of confidence among health care providers when it comes to bringing up advance directives. The providers’ reluctance seemed to stem from a variety of misperceptions—patients and their families aren’t ready to face these issues, end-of-life talks can quickly turn into end-of-hope talks, etc.
Many physicians and nurses don’t receive formal training in how to approach patients and families about advance directives, which can contribute to this lack of confidence.
And when an elder has multiple doctors, there’s often a sense of confusion over which one is responsible from bringing up end-of-life issues. “Communication is key, but in many hospitals and health systems this can be difficult,” says Shannon Dunlay, MD, MS, a cardiologist with the Mayo Clinic in Rochester, Minnesota and lead author of the study. Dunlay emphasizes the need for health care providers to integrate such conversations into the ongoing care strategy of their patients, even if it means getting multiple doctors on the phone to discuss the plan. “Goals and preferences can change over time and patients and their families can feel more comfortable and confident in relaying their wishes to multiple providers,” she says.
In Janet Yano’s blog, Warren’s Daughter, she made a recent post: Read This Book If You Have Older Parents
“Well, I’ve discovered the bible for the other big life stage. The one nobody wants to talk about, or think about, much less spend precious free time reading about. Yep, that’s old age and all the scary things that come with it.”
This is so very, very true! I, too, have written a book, What to Do about Mama? about my own caregiving experience, along with those of 34 other caregivers. My intention was to give potential caregivers a “heads-up” about what to expect. I’m seeing a lot of these attitudes about the whole topic:
Potential caregivers: I don’t need to read it yet.
Current caregivers: I’m too busy to read it now.
Past caregivers: I want to put it all behind me.
Roz Chast’s book, Can’t We Talk About Something More Pleasant? something the public will look forward to reading.
In her PennLive article above: Not asking doctors questions can lead to medical errors–Linda Rhodes shares a statistic that eight of ten doctors find it helpful when a patient brings someone along to appointments. They welcome a second set of ears, find it reassuring when someone is taking notes, and are glad someone is showing up and asking questions. Doctors appreciate questions because an informed patient is more likely to follow orders correctly. Misunderstanding directions can lead to medical errors—something that a simple question could have avoided.
Although I completely agree with Rhodes’ article, I would like to add, however, that caregivers should also be prepared for conflict. In my experience as a caregiver, the issues of maintaining privacy and independence were exacerbated by the fact that I was a daughter-in-law.
When I went to doctors’ appointments with my mother-in-law, the medical personnel often directed their comments and questions to me. I would politely redirect them to speak directly to her. However, any involvement with medical issues, no matter how important, created discord in our relationship, particularly when I began to set up her medications, which occurred as follows:
After a hospitalization, when my mother-in-law was being released, I asked the doctor what his opinion was of my setting up her medications. My mother-in-law said, “You’re walking on thin ice!” After the doctor left the room, she said angrily to my husband: “You never know what is coming out of her mouth!”
That evening, after getting settled in at home, my husband’s sister called and talked to her mother about my setting up the medications. After the phone call was over, Mom came out, rolling her walker with a vengeance, and said, “Are you happy now?”
In truth, I was never happy when my mother-in-law “lost” the ability to perform a task independently. But in the case of medications, safety was the priority.
When I was 14-years-old, my father went to the Mayo Clinic. He died there, never having returned home.
When my children were teenagers, I told them the story of Daddy never coming home. I stressed that if they were ever going to be late getting home, I needed them to call me and let me know (these were still the pre-cell-phone days). In the event they did not get home on time, and did not call to let me know, I would tack on minutes for reasonable factors that could have interfered with our agreement. I then set an outside time limit in my mind that they would return home. If that time came and went with no phone call, I would basically “freak out.” Obviously, they were dead in a ditch somewhere.
In her AgingCare.com article: 6 Things Long-Distance Caregivers Understand, Sheri Samotin describes the similar feelings that long-distance caregivers have when roles with their parents have reversed:
If you are a long-distance caregiver, you probably feel as though you’re often in the dark. You call and call your loved one, but there’s no answer. You go to that darkest place – something must have happened. Then, if you’re like most of us, you go into full alert mode, calling every five minutes. Perhaps you call your loved one’s neighbors. Maybe you even call the police. After all, you’re the caregiver and you don’t want “anything bad” to happen on your watch.
Sheri’s words ring familiar when reading Judene’s story in “What to Do about Mama?”
Dad would go in to see Mom at the hospital, then go to supper at one of the local restaurants. I would call long distance to the house to make sure he got home safely, but on one occasion there was no answer. So I ended up calling around to several of the restaurants to ask if they had seen him. I called the neighbors, who went to the house to see if he was home, and thank God he was. WTDAM p.68
For some really good pointers about dealing with the “worry” aspect of long-distance caregiving, please visit: http://www.agingcare.com for the full article:
6 Things Long-Distance Caregivers Understand
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