Category: Long-Term Care

The parenting experience is precious and overwhelming.

In fact, according to Pew Research Center, about 41% say being a parent is tiring and 29% say it is stressful all or most of the time. But you already know that don’t you?

Three practical mental health tips

• Ration your exposure to negative thoughts and negative media. This helps to not add things to your worry list.
• Don’t underestimate the power of sharing the “real story” of your parenting struggles with others. Knowing you are not alone lifts some of the weight.
• Play with your children. This is a proven way to relieve stress. It sounds simple, but play can get lost in the business of life and the use of our phones. Whether it’s playing a game, building Legos or dancing or singing together, when you’re enjoying play with a child, your body releases endorphins that promote a feeling of well-being.

The article titled, “How to Reduce Stress” by the Parenting arm of Unicef has simple, proven ways for parents to manage stress and provides guidance on recognizing stress, managing anger, self care and when to seek help.

The National Parenting Helpline, operated by Parents Anonymous is available 24/7 and is a “judgment-free, compassionate space for those in need of immediate emotional support”.

Sometimes we find mental health resources for employees who are helping a parent or older adult, like our support for Holly.

• Holly was feeling stuck and anxious as a result of the behavior of her father who at 60 had early onset dementia. His behavior was very defensive and demanding.
• Her Ways & Wane care advisor coached her on what to expect from dementia behaviors and how to respond, but also helped her find a therapist in her network that fit the profile and therapy approach she wanted.
• Holly set up therapy and has found tremendous support because of it. Her care advisor also provided two dementia-focused caregiver support groups for Holly and her sister. Holly sent this message to her Care Advisor, “I greatly appreciate you, and you make this whole scary process a lot less scary, so thank you.“

According to the CDC, it is estimated that 20% of people aged 55 years or older experience some type of mental health concern. The most common conditions include anxiety, severe cognitive impairment, and mood disorders (such as depression or bipolar disorder). Sometimes we find a specialized therapist for the older adult, like for Mason’s mom.

• Mason reached out to us feeling very concerned about his 67 year old mom who had become depressed as a direct result of a chronic health condition. She was overwhelmed and isolated at home because of it. He described her as “having more bad days than good days”. His mom was open to talking to a therapist.
• Mason’s Ways & Wane care advisor found her a local provider that specializes in helping people cope with chronic medical illnesses. He said, “the psychologist she got through the list you provided, she’s been seeing and absolutely loves.”
• Mason shared that his mom is now having “more good days than bad days” and has gone from staying isolated at home to getting out and about again. This solution allowed Mason to worry less about his mom and focus more on work.

Your cell phone rings in the middle of your work day. It’s your brother calling to tell you that something happened with mom’s heart and she’s in the hospital. It’s a very scary call. Almost as scary as trying to figure out what to do next. The information here will help you know what your next steps should be.

Keep this on your radar
Don’t assume the older adult’s spouse or partner is able to be their advocate. Between the stress of the situation and a generation that may not be comfortable questioning doctors, hands-on support from you or someone else in the family (even virtually) may be necessary.

Keep an eye out to help manage the non-hospitalized partner’s stress and needs. Their circle of friends can be called upon to help with transportation to and from the hospital, meals or companionship. It’s a generation that is used to showing up in times of need.

When you live far away from the older adult

• First, call the hospital’s nurse desk and make sure they have your name, number and relation to the patient.
• If the current status or care plan is unclear to those involved, ask the nurse to connect you with the Social Worker on staff. The Social Worker can arrange a meeting with the doctor who can explain the situation.
• “Do I need to be there?” It’s the million dollar question. If you aren’t sure if you should be there in person, ask the nurse and/or doctor if they would recommend that a family member be present.
• Don’t be afraid to call the nurse desk for updates. The ideal time frame to reach them is likely between 12-5pm since it’s after morning rounds and between shift changes.

Keeping track of it all
Keep detailed notes capturing the names, titles and dates of who you speak with and their role in the care being provided. Frequently there are various care providers and it’s easy to lose track of who said what and when. You can download the Notes During a Hospital Stay template, which offers suggested questions for the medical team and space for notes.

The Ways & Wane GoKit Medical Planner is a great place to keep these notes. Once you’ve set it up to use, the older adult’s PCP, list of allergies and medicines can be found there. Additionally, the portable GoKit Planner has slots for insurance cards, IDs and envelopes for copies of care directives.

The hospital discharge process

• Use the GoKit Medical Planner’s suggested questions to ask prior to discharge and keep notes there. Or download our Hospital/Nursing Home Discharge form with suggested questions and space for notes.
• Go through the discharge notes with the nursing staff in order to clarify any questions.
• Make sure to explain the home environment to the care providers, specifically if there are any steps in the home, a spouse who cannot manage care needs for another, a lack of transportation to get prescriptions or to receive follow-up care, etc.
• If the doctor deems medical equipment to be necessary (such as a shower chair or bed side commode) it is usually covered by a regular Medicare policy.

IMPORTANT: If the older adult is being discharged to a rehabilitation facility, they will likely receive a list of facility options from the Social Worker. This is usually a pre-formulated list of options, but they are not vetted or screened in any way. In fact, there have been numerous times we have found that the list provided by the hospital included rehabilitation facilities that have been flagged for abuse.

If you find yourself having to navigate a hospital admission for your child, there are two very helpful and yet little known resources available to support you and your child.

A Child Life Specialist

A Child Life Specialist is a healthcare professional whose role is focused on the psychosocial needs of the patient, including mental, emotional, and social needs.

This support can include:

• Develop age-appropriate strategies to minimize trauma and increase understanding of a medical diagnosis through treatments plans using therapeutic play, education, preparation, and activities that promote growth and development
• Supporting children and their families by using a variety of tactics to help them better understand a process, procedure, or other element of their medical experience
• Advocating for the special needs of children and their families
• Providing information, support, and guidance to parents and family members
• Collaborating with the health care team to coordinate and manage care

Your child’s nurse or a Social Worker can ask the Child Life Specialist to reach out to you.

TIP: Since they tend to be in high demand and there may be just one of them at the hospital, put in a request as early as possible. Once you do, provide your phone and email so that it’s even easier for them to reach you.

A Social Worker

The hospital Social Worker can provide help to cope with the effects of your child’s illness on your family. They can support with both immediate and longer term practical and psychological challenges, such as:

• Resources to care for other children while your child is in the hospital
• Reimbursement for parking or public transport to/from the hospital
• Meals while in the hospital caring for your child
• Options for where to stay if you need to be close to the hospital
• Ways to pay for care
• An assessment of your family’s needs in relation to your child’s health event
• Referrals to community resources
• Short-term counseling to help your family adjust
• Help in understanding and learning strategies to effectively deal with behavior

Your child’s nurse can put a request in for a Social Worker to reach out to you.

TIP: Get the Social Worker’s specific contact information so that you can proactively reach out to them. Once you do, provide your phone and email so that it’s even easier for them to reach you.

This short, but very informative “Eight Ways You Can Help Your Child Cope While at the Hospital” by The National Child Traumatic Stress Network may be helpful as well.

If you were to ask your 4 year old if you can live with them when they grow up, they’d likely reply with an enthusiastic “I wanna always live with you; I never wanna live in another place from you!”. 

Ask them again when they are 35 and their answer may be different. 

Maybe you’ll choose to live with your adult child, but it might be nice if you have other choices too. Planning for affordable housing before you are the older adult is something that cannot start too soon. 

Retirement Calculator

Do a quick calculation to see if living with your kids will be optional. Without putting in identifying information or creating an account, Dave Ramsey’s retirement calculator will show an estimate of your retirement savings. It will even show you what you can save if you skip the daily coffee purchase, but you don’t actually have to look directly at that number. 

Compound Interest Example

According to AARP’s retirement planning article, “the earlier you start saving for retirement, the better off you’ll be. If you start putting $5,000 a year into an IRA at age 30, you’ll have about $669,400 at age 70, assuming you earn 5 percent a year. If you start at age 50, you’ll have $186,860. Although it’s never too late to start saving, it’s a lot easier if you start early.”

Fidelity Investments’ 8 moves to help snowball retirement savings has tips for those in their 20s and 30s. Additionally, Dave Ramsey’s How to Save Money: 23 Simple Tips has some truly practical ways to save money even if you can’t imagine cutting expenses.

And as a backup plan, you could always ask your four-year-old to put the “you can always live with me” in writing, especially if you plan on continuing your daily Starbucks habit.

True or false? 

Medicare will cover the cost of mom’s housing and care.

False.

It’s a fairly common misconception that Medicare will cover the cost of housing for older adults, but this is not the case. Medicare will cover up to 100 days a year in a nursing home, but only after a qualifying hospital stay. Particularly since housing prices and living costs are expected to continue to rise, a viable housing plan is more important than ever before.

Most funding for the housing and care of older adults comes from these sources:

• The sale or rental income of their home
• Retirement income such as a pension or investment account withdrawals
• Social Security benefits. According to the Center on Budget and Policy Priorities, in 2022, retired workers received an average of $1,669 per month in Social Security benefits

The fact is that for most older adults in the United States, their available funds do not adequately cover the cost of housing and necessary expenses. Currently, more than 15 million older adults are “economically insecure,” meaning they live at or below 200% of the federal poverty level ($27,180 per year for a single person in 2022), according to the National Council on Aging. In fact, by 2030 there will be about 72 million adults over the age of 65 with more older adults expected to enter the federal poverty level than ever before. 

Budgeting Tools for Senior Housing

Are you helping an older adult to plan ahead or stepping in to help manage a budget for housing and care? There are two free resources to help in the budget planning process:

1. This free Retirement Planner Worksheet is for individuals ages 50-70 and does not require identifying information.
2. If the expected income from Social Security is unknown, you can get an estimate of the expected benefit payout from the Social Security website.

Creative Senior Housing Options

It’s clear that affordable housing options and creative solutions are much needed to address the needs of economically insecure older adults. Some housing solutions include: 

• An Accessory Dwelling Unit which can be added to an existing property. Detailed information about ADUs can be found in our article HERE. 
• Manufactured home communities for 55+ can be another more affordable option. The home itself is owned, while the land in which it sits is leased. Care should be taken to understand the expected increases for the cost of the land lease.
• Senior apartment complexes offer independent living units, sometimes with common use areas and services. The cost of renting is usually less than the cost to maintain a home and cover property taxes, upkeep and repairs.
• The United States Department of Housing and Urban Development (HUD) offers affordable public housing apartments and single-family homes for older adults in need. The two programs which offer the most help to older adults are HUD’s Section 202 Affordable Senior Housing and HUD’s Housing Voucher Program
• The Low Income Housing Tax Credit (LIHTC) Program does not provide housing subsidies, but tax incentives to encourage developers to create affordable housing. These tax credits are provided to each state based on population and are distributed to the state’s designated tax credit allocating agency.

Both HUD programs and the LIHTC have specific processes and requirements to apply. Unfortunately, they can be time-consuming and confusing to navigate. The demand for subsidized housing is already significant and is only going to increase. So while there are long waitlists, it’s wise to begin the process of applying, even if it means paying an application fee.

Our Housing and Care Options chart provides a general overview and cost comparisons.

What if you could implement one thing that would help your child:

• Build a strong work ethic,
• Bond with the family,
• Learn responsibility and self-reliance,
• Practice teamwork,
• Have better academic performance,
• And improve planning and time management skills?

You’d probably want to do it, right? 

The one thing is: chores. 

Childrens’ participation in chores was a significant predictor of work ethic, according to the Harvard Grant Study (the longest running longitudinal study in history.) Chores are one of two key things that enable adults to be happy and successful. The first was love. 

This parenting approach will also give you time back! (Well, truthfully, depending on the age of your child you may be making investments before you see the return. But hang in there, it will pay off.)

Research from the University of Minnesota indicates that children who start doing chores as young as 3 years old, are more successful as young adults than children who have not participated in chores. Starting at any age is better than never participating with routine chores. However, the younger a child starts doing chores, the greater the likelihood that the benefits carry over into adulthood.

If you have a child with ADHD, the article “How Can I Get My Kids to Do Chores?” from the Child Mind Institute outlines the benefits for executive functioning and ideas for rewards and consequences. 

If you need a vision for how to create (or refresh) the delegation of or tracking of chores, The Spruce has some pretty great ideas in their post 13 Actually Doable Chore Chart Ideas for the Whole Family.

Lastly, Iet’s acknowledge that it is frequently easier to “do it yourself”. This is very true. But with a long-term vision and a deep desire for your child’s overall success and happiness, implementing chores is a worthwhile endeavor. 

Even if they break a glass unloading the dishwasher, at least they’ll be a happy adult.

My advice as a medical advocate

The man who seemed to be in charge (since he was the one who had just given detailed and important directives to the medical staff around him regarding medicine changes and a plan of care for our 10 day old baby) finally paused. He turned to me saying, “Do you have any questions?” “Yes,” I said, “WHO are you?” 

There are those who choose to be a medical advocate as a profession. However, most people who find themselves in the role are thrown into it, frequently without any notice. That was my situation. After 21 years of advocating on a weekly (sometimes on a minute-by-minute) basis for my son (and father at times), I’ve found several strategies to be exceedingly helpful.

Five (hard-earned) strategies for advocating well

1.Find out names and titles

Ask for the full names and the tiles of the medical professionals with whom you are interacting. Interrupt them if you need to, ask them to turn their name badges over and if their title/specialty isn’t stated ask them what it is. If it’s unclear to you, clarify what their exact role is in the patient’s care.

Why? There is a hierarchy in a hospital setting and newer, less experienced doctors (like the Residents) can toss out possible outcomes, procedures, approaches and suggested solutions as freely as an enthusiastic flower girl tosses rose petals around. The result can be alarming and confusing, but if you know you are talking to a Resident you can take it all with a grain of salt. If you are talking to the Attending you’ll know to put more weight on their message. (Note: I am not intending to be disrespectful to the Residents and am infinitely grateful for everyone who chooses a medical profession.)

2. Keep notes in a portable binder or notebook

When used consistently both at regular appointments and/or in a hospital setting, this will be an incredible asset in your role as an advocate. It’s where you’ll write down the names and titles/specialties of the doctors with whom you’ve met and the key information provided. Note the date and if it was “in-patient” (in the hospital) so that when you look back it’s clear where the care was taking place. Also, write down your questions beforehand (you really won’t remember them if you don’t) and confirm they’ve been answered before the appointment is over, even if it means asking the doctor/nurse to wait while you do a second review of your questions and notes. (The Ways & Wane GoKit is perfect for this!)

Why?

Especially under stress, it’s nearly impossible to keep track of the myriad of details provided in a care setting. If asked by other family members for updates and details you not only have the information captured in writing, but you can take a picture of it and text that as an update. If you are playing tag team with another advocate (like your spouse or sibling), a shared notebook is a great way to make sure information is documented and communicated. (Permission from the patient should be granted before sharing their private medical information like in a text out to a group.)

3. Don’t worry about being the “good guy”

It’s not uncommon to be intimidated by doctors and other medical professionals, but remember that your role is to advocate really well for someone else, not to win a prize for “most congenial”. Don’t be rude, but know that you have the right to insist on second opinions, additional answers, explanations in plain terms or other care needs that are in the best interest of the one for whom you are advocating. At the end of the day, remember that you and the patient are the customers. 

Why?

It’s very hard to do a great job at being a strong advocate when you are worried about aspects of the interactions that don’t have to do with getting the information you need and making sure the patient gets the best care possible. You have a job to do. Focus on that in order to show up as the advocate you hope someone would be for you. 

4.  Ban time in the land of “what ifs”

Make a purposeful decision not to put mental and emotional energy into the 25+ “what if” scenarios that you are tempted to entertain, especially if you are googling information. You do not actually show up more prepared for the horrible thing if you practice it in your mind. I believe it’s like practicing getting hit by a car so that if you get hit by a car it won’t hurt. There will likely be enough difficult things that you must face for absolute certainty, why use up your “perfectly good worry” in the land of “what ifs”? 

Why?

It’s truly helpful for your mental health to focus on what is actually ahead instead of what might happen, especially since we can be exceedingly good at coming up with the most terrifying version possible. As an advocate, you only have so much energy. Use it purposefully. 

5. Gather whatever tribe you can

Especially in the middle of an intense season of being a medical advocate, ask for help. Ask for practical help (can you bring me lunch or pick up X from Walgreens?) and emotional support (will you text me a cute picture or kind thought?). Ask regularly and ask people who you think may say no. You cannot control what their response is, but you can ask and in doing so you may just invite someone into something that will bless them too. 

Why?
Once you come out of the intensity of the season, there won’t be a prize for the most worn out or emotionally ravaged. We all need community and the reminder that we are loved and cared for too. It’s a very good thing not to do the hardest season by yourself. This is one of the reasons I truly love our mission and work at Ways & Wane – we get to join the tribes of those who are doing their best to advocate really well. 

Whether you are advocating or a child or an older adult, you’ll likely show up really well sometimes and other times you’ll scrape yourself up and give what little you can. Either way, you are showing up and that’s amazing. Be gentle with yourself too.