Caring for Aging Parents While Working Full-Time.pptx
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Suggestions for self-care and respite care while caring for aging parents or other loved ones, while working full-time.
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Caring for Aging Parents While Working Full-Time.pptx
- 1. Caring for Aging Parents While Working (The other slide of the “Sandwich”)
- 2. What is the “sandwich generation”? Mainly women, caught in the middle of both children and living parents. FACTOID: There are 53 million family caregivers in the U.S. providing unpaid care to an adult.
- 3. One of 4 kids. Recently went through helping care for my dad at end of life. Didn’t have the experience of raising my own kids, but now I’m caring for my mom, who just turned 90. Hope to make this a jumping point for conversations & ideas. You can connect with me on LinkedIn. A little about me…
- 4. Differences in Caring CHILD CARE • More “peers” available to share responsibilities; easier to “trade off” duties. • Becomes “easier” to communicate boundaries as children mature. ELDER CARE • Becoming more common. • Can become harder over time as parents reduce competencies.
- 5. Poll • What stage are YOU at? • What’s YOUR biggest challenge as a caregiver to an adult parent?
- 6. Biggest Concerns for Caregivers • Managing time • Emotional and physical stress • Lack of privacy • Sleep deprivation • Financial strain • Being afraid to ask for help • Depression and isolation
- 7. Be aware of…possible caregiver depression • “Compassion Fatigue” • The pandemic has created more opportunities for remote work, meaning more freedom but also, additional isolation. • Be wary of “self-medicating.” • Social media can negatively affect people of any age, causing “FOMO.”
- 8. How to deal… • Transparency with employers • Set limits with elderly parents • Be aware of what to expect down the road • Encourage self-sufficiency where possible • Find resources to help you • Rely on “third places”
- 9. Places to find help • Discover options for “respite care” • Use your EAP if your company has one • Sign up for and use Nextdoor • Try Findhelp.org www.findhelp.org • Locate issue-specific Support Groups & online forums
- 10. Another idea to find help Consider using generative AI… • Bard bard.google.com • ChatGPT chat.openai.com See article: Is AI the Future of Mental Healthcare?
- 11. Possible Activities for Your Parent? Pickleball Book club Windowsill garden Ant farm Suduko Word search Jigsaw puzzles Chinese checkers Checkers Raking leaves Tai Chi Pinterest Facebook Scrabble Boggle Coloring books Bullet Lists MadLibs
- 12. Areas loved ones may need help… • Technology help needs • Food and meals • Having someone to converse with, a ready and available listener • Fighting boredom or feelings of insignificance • Forgetfulness / retelling stories / Sundowner’s syndrome • Driving (know when to hang up the license and resources to keep mobile)
- 13. Special Issues • Paranoia or false memories, unhelpful recurrent ideation • Hoarding (creates anxiety in both caregiver and parent, as well as physical dangers) • Parent’s resistance against accepting help • Some people get “cantankerous” when they age
- 14. The Best Care Situation…. Is one that: • Meets your loved one’s physical needs • Keeps them as content as possible given their situation (note, this doesn’t mean they are happy all the time) • Allows you, the caregiver, to meet other obligations in your life (children, work, etc.) • AND does all this without wrecking your own health (physical and mental).
- 15. Considerations about Outside Care • If your parent has advanced dementia or needs palliative care, it may be the best bet • Potential for elder-abuse (physical or financial) • Reduces the value of the estate • New options emerging, like “dementia villages”
- 16. Considerations about Providing Care Yourself • Caregiving can take a toll. • Older caregivers find caregiving more meaningful than younger ones, but not surprisingly, more tiring. • Studies also show that caregivers who dwell on positive aspects of caregiving show lower levels of depression. Keep a gratitude journal. • Caring for your parents provides an opportunity to give back.
- 17. Benefits about Providing Care Yourself • Two can live more cheaply than one, and it’s much less expensive to provide care in your own home. • You gain skillsets. • For better or worse, you get a keener sense of the aging process (and can take steps to stay active, have better posture, etc.) • You may help your parent stave off dementia. (This study found that social isolation can increase the risk of dementia by 50%.)
- 18. Ways to regenerate, recharge, and live a balanced life. • Self-care for the caregiver. (YOU!) • Get help from siblings. • Use Google docs to share responsibilities, plan, & document. • (Cautiously) consider a pet.
- 19. Possible Activities for YOU Podcasts Yoga Mani/Pedi Bullet Lists Aromatherapy Hire a cleaning person Pandora radio
- 20. Resources
- 21. Websites • Activities of Daily Living Checklist • www.agingcare.com/topics • Administration for Community Living acl.gov/ • Caregivers section of MedlinePlus • National Aging and Disability Transportation Center • AARP Family Caregiving Guide & Caregiving section of AARP website • AgingCare-HomeCareGuide (website also has help forums) • Depression and Caregiving • What is Compassion Fatigue, and how do I cope?
- 22. Free Meditation sources A couple of free, online meditation sessions (via Zoom): • Meditation with Sarah (three times a week) • Daily Mindfulness Meditation (M-F, am and pm sessions) Pandora radio channels • Meditation Radio • Meditation Radio 10 Free Mental Health Apps
- 23. Recommended Books • “The Dementia Caregiver,” by Marc E. Agronin • “Elder Rage, or Take My Father... Please!: How to Survive Caring for Aging Parents,” by Jacqueline Marcell • “My Aging Parent Needs Help!: 7 Step Guide to Caregiving with No Regrets,” by Cynthia Kaye • “The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter,” by Margareta Magnusson (see link to summary on Lifehacker website: 'Swedish Death Cleaning' Can Improve Your Life Right Now }
- 24. “Romance fails us, and so do friendships, but the relationship of a parent and child, less noisy than all the others, remains indelible and indestructible, the strongest relationship on earth.” - Theodor Reik
Editor's Notes
- This session will map out some common challenges (and solutions) for those caring for aging parents while working. It will briefly go into why these responsibilities usually fall to women and include some statistics about what this role can mean for women.
- The term often refers to middle-aged people who support both their parents and their children— financially, physically, or emotionally. This session will focus on the bottom half of the sandwich…elderly parents and how to manage caring for them while working full-time. “The average age for millennial caregivers is 27,” says Lori Nisson, MSW, LCSW, Family and Community Services Director at Banner Alzheimer’s Institute and Banner Sun Heath Research Institute in Arizona. “Millennials spend about 21 hours a week on caregiving and 75% of them work full time.” See article: Why women become sandwich generation caregivers more often than men and how they can cope https://www.care.com/c/women-facing-sandwich-caregiving-challenges/?related_content=https%3A%2F%2Fwww.care.com%2Fc%2Ftransportation-options-for-seniors-local-and%2F
- While this is geared towards caring for an elderly parent, some may find the info helpful for caring for an aging spouse. You’ll find there’s a whole terminology for caregivers. ADLs = Activities of Daily Living, respite time, palliative care, hospice, Sundowner's syndrome, also called sundowning or late-day confusion, is a group of symptoms that occur in someone with memory loss that can start around late afternoon and continue into the night.
- “Nursing Homes” are an outdated concept, with negative connotations, including even elder abuse. Today, there are more options like “assisted living” facilities, “adult day care”, “memory care” communities rely on experienced, skilled staff to help prevent and minimize dementia symptoms like the following: Sundown syndrome Memory loss or confusion Wandering Aggressive or combative behavior Hallucinations As reported in the New York Times, today there are even “dementia villages” for elderly people to live in communities.
- Emotional stress: Feelings of guilt, sadness, dread/anticipatory grief, worry. Studies show that increased levels of stress can aggravate immune disorders. Stress decreases the body's lymphocytes, the white blood cells that help fight off infection, and causes inflammatory response. Lack of privacy: can cause you to entertain less at home Financial strain: PUT IN CHAT HOW MUCH YOU THINK A NURSING HOME COSTS PER MONTH WHERE YOU LIVE In 2023, the national median cost of assisted living is roughly $4,774 per month; however, these costs will vary greatly depending on both location and the type of community. “Younger caregivers are also bearing some of the cost of care,” said Nisson. “In an AARP study, caregivers reported spending an average of $6,800 a year of their own money on caregiving expenses. Keep in mind this group also has the highest rate of student loan debt on top of the added financial pressure of caring for a loved one.” Isolation: The pandemic has made remote work a commonplace possibility and it relieves many concerns for caregivers, but stats from a June 2023 webinar warn that remote/hybrid workers are especially at risk, with 53% saying they don’t regularly socialize with their coworkers.
- Family caregivers may be even more susceptible to compassion fatigue than formal caregivers because of the lack of systemic support they receive. (from study in the Journal of Adult Development) Compassion fatigue has been linked with secretive self-medication or addiction. Overuse patterns like overeating, alcoholism, smoking,, drug addictions, or even compulsive shopping, gambling addiction or workaholism. Even overdoing social media can be bad. "Numerous studies continue to indicate that social media use correlates to increased risks of depression, low self-esteem, loneliness, and anxiety. According to some studies, social media use does appear to cause a decrease in self-esteem, with the age group most affected being girls between the ages of 10 and 14." (source: https://www.theguardian.com/science/2022/mar/28/social-media-may-affect-girls-mental-health-earlier-than-boys-study-finds ) Social media preys on girls where they are most vulnerable and it also exposes them to bullying and negativity. Further, it takes up precious hours in the day when they could be enjoying more fulfilling, positive activities.
- Transparency with employers “Balancing work and caregiving Building a career while caring for a parent has its own set of challenges. “Many people don’t share their responsibilities with supervisors or coworkers for fear of missing out on job opportunities or being seen as an unreliable worker,” said Nisson. But not sharing your outside responsibilities makes it even more difficult when you need time off for doctor’s appointments, transportation issues and emergent medical needs. Nisson recommends you speak with your supervisor about your caregiving responsibilities. Employers are becoming more receptive to supporting people with family commitments in order to retain their employees.” Be aware of what to expect down the road Intermediary steps and resources in your area. And be prepared to learn about palliative and hospice care. Whereas palliative care is broader and can be utilized at any time during a life-limiting illness, hospice is a philosophy of care that seeks to provide comfort and maximize a patient’s quality of life as they near the end of life. These services are beneficial for both the patient and their caregivers. Encourage self-sufficiency where possible “Ask them to plan meals, fold the laundry and participate in the shopping, cooking and cleaning where possible. Bake cookies together, even if they can only help stir the dough. Let them decide what TV shows, radio programs and music they want to listen to.” Find resources to help you You may be surprised to find that your employer offers some resources that can help. Do you have an intranet for employee benefits? My employer, for example, offers the Calm app free to employees. It also has something called UKG, where there are other benefits like our Employee Assistance Program, LifeMatters Support Sessions, benefits like Rocket Lawyer, (which has advice on Family/Elder care), RecoveryOne (online back and joint care program), FitPros LIVE! With live, streaming content in short 15 to 30 minute sessions, Mental Health Awareness Management Tips, etc. Our company also offers ThrivePass, which reimburses for hobby or fitness expenses. Concept of Third Places A third place "offers stress relief from the everyday demands of both home and work. It provides the feeling of inclusiveness and belonging associated with participating in a group’s social activities, without the rigidity of policy or exclusiveness of club or organization membership".[4] https://en.wikipedia.org/wiki/Third_place Weekly group from classes to church can help you connect. I go to Quaker Meeting, do ceramics (wheelwork, which provides centering) and figure drawing. Find your “tribe.” Other searches on Amazon or Google Go to Amazon and paste: gadgets for dementia (there are things like “fidget blankets” for sensory engagement, like an adult version of the Dressy Bessy doll for kids) Or Google “adaptive clothing” for apparel or shoes for needs like arthritis, diabetes, handicaps, bedridden people.
- Respite care provides short-term relief for primary caregivers. Respite care can take place in your own home, at day-care centers, or at residential or nursing facilities that offer overnight stays. Findhelp.org Search and connect to support. Financial assistance, food pantries, medical care, and other free or reduced-cost help. Plus, Support groups for: Alzheimer’s & Dementia Caregiver Burnout Depression Diabetes Grief Support Incontinence Care New to Caregiving Parkinson’s Disease Veterans Assistance AI for solutions with specific prompts on the situation and desired outcome….
- From article: “AI could help alleviate this problem by providing help without any need for the patient to disclose their issue to another human being. Virtual mental health therapists or chatbots can provide mental health support, and they can also provide diagnoses and recommend therapies. It’s possible that patients worried about social stigma would feel more comfortable asking an AI for help rather than a GP or a human psychotherapist.”
- You want to help your parent fight boredom. Many of these activities can be done solo. Probe your parent about what they enjoyed in their youth. Magic rocks, or other crystal growing kits.
- Technology help The other day, my mother asked when writing an email, “how do I create a question mark?” Create easy to follow, step by step instructions for accessing email, joining a zoom call, using a smart phone, checking voice messages. Some older adults can be helped with vision assisted clocks/calendars, or even Siri/Alexa. If possible, do tasks alongside your parents instead of for them. Consider “wearables” like the Tempo, a wrist-worn wearable that houses a sophisticated array of sensors able to detect an individual’s activities of daily living (ADLs) and location while providing a touch-button call system for real-time communication with caregivers. Tempo senses ADLs like eating, drinking, bathing, grooming, brushing teeth, toileting, walking, sitting, sleeping and more. And, it knows in what rooms those activities are occurring. When the integrated assistance button is pressed, an alert is sent to caregivers showing the exact location of the senior. Tempo also features a 2-way audio communication between the caregiver and the senior for additional support. Food and meals Consider safety concerns about cooking and checking the fridge for food spoilage. Signs around the house can help. I have one by the stove, to remind Mom not to use the high heat on burners, and not to leave a pot unattended. Dad’s attempts at taking out trash and recycling… Forgetfulness – Make large signs or post-it notes on appliances, put contact info on canes or a phone. Sundowner's syndrome, also called sundowning or late-day confusion, is a group of symptoms that occur in someone with memory loss that can start around late afternoon and continue into the night. It can cause increased confusion, disorientation, anxiety, agitation, pacing and even wandering. Driving: Here are only a few warning signs of unsafe driving: Delayed response to unexpected situations Becoming easily distracted while driving Decrease in confidence while driving Having difficulty moving into or maintaining the correct lane of traffic Hitting curbs when making right turns or backing up Getting scrapes or dents on car, garage or mailbox Having frequent close calls Driving too fast or too slow for road conditions
- Parent’s resistance against accepting help: Sometimes parents want to take responsibility for themselves but aren’t able to do all they think. Also, their feelings about how much help they want or need can vary with their moods. If they are still in control of finances: A note on finances: If your parent is tempted to give to the charities solicitations they may be barraged with in the mail, tell them you’ll check the legitimacy of charities/businesses with: The Better Business Bureau. BBB Wise Giving Alliance Charity Navigator CharityWatch GuideStar Paranoia: “Tips to Help Older Adults Experiencing Paranoia If you know someone experiencing paranoia, these tips can help both you and them navigate a challenging time: Be understanding and patient Keep their surroundings calm and quiet Avoid arguing about anything that is making them paranoid Empathize with them and let them know that you understand why their thoughts would make them afraid Consider if your body language shows them you are on their side (for example, sitting next to them instead of in front of them)” Capgras Syndrome This syndrome is named for Joseph Capgras, a French psychiatrist who explored the illusion of doubles. Those with Capgras syndrome hold the delusional belief that someone in their life, usually a spouse, close friend, or family member, has been replaced by an impostor. It can occur in patients with schizophrenia, dementia, or epilepsy and after traumatic brain injury. Treatment approaches mirror those utilized for the underlying disorders and often include antipsychotic medications. Hoarding: Diogenes Syndrome The compulsive hoarding of rubbish and seemingly random items is the main feature of Diogenes Syndrome, which is found mainly in the elderly and is associated with progressive dementia. Other characteristics include extreme self-neglect, apathy, social withdrawal, and a lack of shame. The syndrome is a misnomer, as it is named after the Greek philosopher Diogenes of Sinope. Diogenes was a Cynic who, according to the philosophy he helped found, rejected the desire for wealth, power, and fame, choosing to live free from all possessions. He found virtue in poverty, slept in a large ceramic jar, and sought social interaction. Concept behind Swedish Death Cleansing: At a certain point in your life, you should stop accumulating more stuff and start dealing with the stuff you’ve already accumulated so your loved ones won’t have to do it after you’re gone. Instead of leaving an enormous chore behind for the future, you can make it a thoughtful project now, while you’re still in control. The author, Margareta Magnusson, recommends age 65 as a good time to get started. “Hoarding can be more of problem as people age. It can increase risk of falls and losing important documents. Nearly 6% of the population has hoarding disorder. Around 75% of individuals who have hoarding as a diagnosis also have a co-occurring mental health condition. The most common co-occurring disorders are major depressive disorder, social anxiety disorder/social phobia, and generalized anxiety disorder.” “Compulsive hoarding includes ALL three of the following: 1. A person collects and keeps a lot of items, even things that appear useless or of little value to most people, and 2. These items clutter the living spaces and keep the person from using their rooms as they were intended, and 3. These items cause distress or problems in day-to-day activities.” “Put safety first Prevent falls by removing hazards that could cause your loved one to trip or fall down. Add handrails in hallways and stairways and grab bars in the bathroom for extra support. If they are alone for lengths of time, consider getting a personal emergency response system so that they can call for help by simply pressing an alert button.” Parent’s resistance: Communication Guidelines Use “I” messages rather than “you” messages. Saying “I feel angry” rather than “You made me angry” enables you to express your feelings without blaming others or causing them to become defensive. Respect the rights and feelings of others. Do not say something that will violate another person's rights or intentionally hurt the personʼs feelings. Recognize that the other person has the right to express feelings. Be clear and specific. Speak directly to the person. Donʼt hint or hope the person will guess what you need. Other people are not mind readers. When you speak directly about what you need or feel, you are taking the risk that the other person might disagree or say no to your request, but that action also shows respect for the other personʼs opinion. When both parties speak directly, the chances of reaching understanding are greater. Be a good listener. Listening is the most important aspect of communication. There are some Facebook Groups that can help you get advice AARP Family Caregivers Discussion Group or vent about special issues: Full-on Parent Care (Caring for our elderly parents)
- Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave a year to care for relatives. Ask your human resources office about options for unpaid leave.
- Potential for elder-abuse (physical, financial, or emotional) Note: If you’re caring for your parent in the home, be aware of all kinds of emotional abuse that can happen if tempers flare. People can be emotionally abusive in families, such as shouting or belittling or gaslighting. New options are slowly cropping up. Started in Holland, now expanded to Denmark, Norway, Italy, Germany, Australia, now coming to US (one going to open in NJ) In a certain sense, Hogeweyk is like a fortress. Apartments and buildings surround the whole village, fully enclosing its inhabitants with the exception of the village's main entrance which is monitored 24/7. However, take a step inside and the restaurants, cafés, shops, gardens and outdoor spaces create an environment just like the world outside, only this world is self-contained and completely safe for people with dementia. The residents of Hogeweyk are able to carry out day-to-day activities and lead a largely normal life , despite the fact that they are under surveillance at all times. There are twice as many carers as residents to ensure high levels of care. The carers wear ordinary casual clothes and their strong relationship with the residents is unique. https://operabeds.com/blogs/news/dutch-dementia-village#:~:text=Hogeweyk%20is%20known%20as%20'Dementia,Hogeweyk%20is%20like%20a%20fortress.
- Caregiving can take a toll. It may even increase suicidal ideation. Know about https://www.sciencedirect.com/science/article/pii/S0010440X21000390#:~:text=The%20proportion%20of%20caregivers%20experiencing,by%20homicide%2Dsuicide%20also%20reported. Know about: 988 Suicide and Crisis Lifeline Hours: Available 24 hours. Languages: English, Spanish. Learn more 988 (Long-term caregiving for Alzheimer’s may shorten life up to eight years) Allow yourself to mourn the “loss” of your parent Although they have not passed away, the person that you knew as your mother or father may be changing rapidly. It is okay to feel sad or angry about your relationship changing, and to allow yourself to mourn the loss of your previous relationship. By Carol Bradley Bursack “A new study by Ohio State University in conjunction with the National Institute on Aging has shown that adult children caring for their parents, as well as parents caring for chronically ill children, may have their life span shortened by four to eight years. Their focus was on telomeres, which are areas of genetic material on the ends of a cell’s chromosomes. Over time, as a cell divides, those telomeres shorten and lose genetic instructions. An enzyme called telomerase normally works to repair that damage to the chromosome.” https://www.cdc.gov/aging/publications/features/lonely-older-adults.html
- You gain skillsets. For me, it was learning how to negotiate for services (termite tenting, plumbing, learning to barter) And I became a better, more efficient cook.
- Read The Caregiver's Bill Of Rights https://compassionfatigue.org/TheBillOfRights.pdf • Know where to spend some money, and how things can best be paid for. By parent? by splitting expenses? from long-term care, automatic deductions from bank account or credit card. Keep a list (I used Google contacts for most, but also Google Docs for some) Can you get away from time to time? “Park” your parent? Use Google Docs to share information with your siblings. Will. This document outlines how your estate should be distributed after your death. A medical power of attorney. With this document, you name someone you trust to make medical decisions on your behalf if you cannot. Be sure to include mental health powers and to name a primary and secondary person who can execute it if needed. Living will. This document shares your specific care wishes if you cannot make decisions, so your children have guidelines to follow. You can outline whether you want CPR, ventilation for breathing, feeding through a tube, certain medications or treatments, or other interventions. Organ donation. If you would like to donate your organs, be sure your children know your wishes so they can share them. A durable power of attorney. With this document in place, your children can pay bills, access money and make financial decisions on your behalf. It’s essential to make your children aware of your financial situation in case you ever need private care or placement in a care facility, or if you’re faced with an emergency. You may want to add one or more of your children as account holders to your primary bank account, so it’s easier for them to access money quickly if necessary. Mortuary wishes and planning. Let your children know if you have a preferred funeral home, whether you have an insurance policy that covers burial expenses, and if you prefer burial or cremation. Tell them if there’s anything specific you would like mentioned in your obituary. Long-term care insurance. If you have a policy that covers long-term care, let your children know how to access it. Accounts and assets. Maybe you opened an account at a bank in a city you used to live in, own some valuable jewelry or antiques, or have a safety deposit box. Make sure everything is documented, so nothing gets lost. Passwords. Even if you have all the correct documents in place, it can be a struggle for your children to access your accounts if they don’t know your passwords. If you use a password manager, share your master password. Otherwise, let your children know how to find your passwords. Be sure to share the passwords or PINs that unlock your main computer and your cell phone. Medications. Your children should have access to an up-to-date list of all the medications you take and their dosages. That way, if you have any sort of health emergency and they need to step in, they can share this list so doctors can check for possible side effects or reactions. Advisors’ names and phone numbers. You’ll want to make it easy for your children to contact your doctors, lawyer, accountant and other people you rely on if you cannot do it yourself. Key. Be sure your children can enter your home if they need to. Copies of insurance cards. This information makes it easier for your children to take care of your health care expenses. You can put all these documents and information in a binder and give it to your children or keep it in a place they know and can access. “It is important for children to have a copy of these documents or at least know where they are so that if they get an emergency call, they are prepared to step in,” Sheridan said. These conversations can be challenging, and they can bring up difficult emotions as you and your children consider a future where you’re no longer healthy and vibrant. But it’s essential to have them. You don’t have to talk about everything all at once. If your discussion gets too emotional, take a break and talk again after everyone has had a chance to deal with their strong feelings.
- As for your parent, some of the best activities for yourself is to return to passions of your youth. One of the signs of caregiver stress Is losing interest in activities you used to enjoy. Some websites and other resources follow on the next slides.