PTO for a parent

“Hi mom, how did it go at your doctor’s appointment today?”

“Well, they said that I needed a new medication to help me remember things.”

“What was the diagnosis that they were treating?”

“I’m not really sure…”

It used to be that she took you to the doctor, sat in the vinyl chair next to the paper covered recliner, asked the doctor all the right questions and filled out all the forms. 

Now it’s you in that vinyl chair and she is sitting on the paper covered recliner quietly, like she used up all her questions when she asked them on your behalf—all those years ago. 

When did you start realizing that you wanted to attend doctor’s appointments together?

It may seem easier to go to appointments with your older adult so you can get the whole story. Although it can be a bit of a tightrope as you respect their independence and ask the tough questions. 

Out of love and necessity, I’ve been an advocate for a seriously ill family member in the hospital and at doctor appointments literally hundreds of times over the past 19 years.

I’ve learned a few things in that time. I’ve summarized it for you.

Six Ways to Be a Bold Medical Advocate

#1. You are the customer. There is something about a doctor title that can be intimidating, but it doesn’t change the fact that they are there to make sure your needs are met. Also, you are paying for the care.

#2. Arrive with your questions written out and don’t let the doctor leave the room until you’ve taken the time you need to make sure all the questions were asked and the answers understood. That means even if the doctor is standing at the door waiting while you are reviewing your notes.

#4. If you aren’t given the expertise, time and attention you need, find a new doctor. You don’t need to tolerate care that doesn’t meet your needs. It’s even okay if it’s because the doctor’s attitude or demeanor isn’t a fit.

#5. Ask for what you need. One time (to avoid embarrassing my family member) at check in I told the receptionist that I wanted to talk to the doctor privately at some point. Another time I asked the nurse to use the term “coach” instead of “hospice” in front of my dad. Many times I asked for a hallway conversation. 

#5. Make sure you know how to contact the doctor for follow-up concerns or questions. Weekend? After hours? Text? Email? As information sinks in, more questions will likely arise.

#6. Don’t hesitate to ask the doctor to use plain terms and simple explanations if they are using terminology that isn’t easy to understand. It’s okay that you (probably) didn’t go to medical school. I have some training through Gray’s Anatomy, but it may not be complete.

Use the right tools

One of the tools I have always used is a portable medical planner. I tried keeping notes on my phone, but found that it took too long to bring it up and type in answers, etc. so I used all my experience at the doctor’s office and hospital to create what I believe people need. I even designed the cover and taught myself InDesign so I could do the layout. Then I added pockets for organizing all the things. Just today, we got this feedback which delighted me…

“I received the GoKit yesterday and I was very impressed. Here are some of my first impressions:

  1. Loved the size. Easy to carry.
  2. I like that it doesn’t look like a medical document planner. That was important for my family because my mom wanted to look at our homemade notebook and we had to disguise it.
  3. I like how the book reminds, encourages and speaks to the caregiver in the blue bubbles.
  4. It is great that the divider pages are color pages. Relaxation technique built in!
  5. If I had received this from my employer, I would have felt totally supported and cared about!”

Click here to download a page from the “Doctor” section of the planner. Use it to help you prepare and navigate the next appointment for your older adult.

May you find joy in loving one another well.

Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. 

A little help, please

ONE question that reduces overwhelm when caring for an older adult with dementia, Alzheimer’s or physical needs

You don’t need to do it all and you definitely don’t need to do it all by yourself. As a family caregiver, there are times when someone else cannot fill your shoes, but there are many tasks someone else can do.

Before you add a task to your to-do list, ask

“Do I have to be the one to do this?” 

Put support systems in place for yourself so that you can show up in the areas where no one can replace you.

No one can replace you in your tradition of getting a root beer float with your older adult from the drive through.

No one can replace your sweet reminiscing through a photo album. 

But someone can remove some of the other day-to-day tasks that fall on your shoulders. Now more than ever, remote and home support services are pretty widely available.  If you are worried about the expense, set a weekly amount that you would pay to be less stressed. Then hire a few tasks out.

What could that look like? 

5 Ways to Delegate

Here are 5 ideas where spending a little bit of money can provide essential support for you, the family caregiver.

  1. Laundry service. There are places that charge just $1 a pound to pick up your laundry from a bag on your porch, wash it, fold it and return it to your porch. (Think cloth diaper service, but better.)
  2. Ready-to-prepare meals. Amazon Fresh used to charge extra for their grocery delivery, but now it’s included in a Prime membership and is free when you meet the minimum purchase amount. They have fresh, ready-to-prepare meals that even a non-cook can pull together like Kung Pao Chicken, No-Prep Kit for 2 for about $14. (It was yummy.)
  3. Hire self-care. There are companies like Zeel who have professional massage therapists who will come to your home. I tried it twice and to answer what you are wondering—it’s not creepy at all.
  4. Leverage your family, the neighborhood college kid or someone from your faith organization to do errands for you. Dropping off the package to UPS, returning the library book or picking up the Walgreens order for your older adult are all things you can ask someone else to help with. Or choose a company like TaskRabbit when you need a second set of hands or wheels to finish your to-do list. When you need an errand runner, book a Tasker to pick up prescriptions, make a trip to the post office, or complete any other one-off on your list. 
  5. Hire in-home help 10 hours a week. If you are concerned about finding good help and how to pay for it, look at our “How to Pay for Care” package. We’ll make sure you get all the benefits that you qualify for!

In a season that can be very intense, taking things off your plate so you can show up where you are not replaceable can make a huge difference to your level of stress and overall mental health. 

May you find joy in loving one another well.

Elizabeth Dameron-Drew is the co-founder and president of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, doing research or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

Free Respite Help in 2021

Dial 2-1-1 anytime of the day or night to get respite care resources (and other help) in your area

For example, a search on the 211 website:  www.211.org showed me resources near me, like the Jewish Family Service Caregiver Support Program which can offer respite help. I also found a link there that showed me 14 Adult Day Care options ranging from $0-65/day.
As a nonprofit funded by United Way and local governments, 2-1-1 made more than 12.8 million help connections in 2018. It’s free to have them help you.

Here are four reasons why you should call 2-1-1 for answers about local nursing homes, walker recommendations, senior transportation and in-home care.

  1. 2-1-1 referrals are free.
  2. 2-1-1 is government-funded, but it is not just for the poor. The operators can give you information about support groups, housing options and caregivers.
  3. 2-1-1 gives you names and numbers of local companies, nonprofits or agencies that will provide the services your senior needs. 
  4. 2-1-1 is open 24/7 and available by phone (best) or chat at 211.org or by text. They report that 94.6% of the U.S. population can access a local 2-1-1 center. My call was answered quickly by phone, but not at all by text. 

Calling 2-1-1 would have given me a starting point to getting more help for my dad. Here’s a checklist of questions to ask 2-1-1 when you call, so you don’t forget anything.

Now may you have peace as you help an older adult in their waning phase of life.

Debbie McDonald is the Founder of Ways & Wane, an online platform that helps you help your aging parent. She lives in Northern California with her husband.

Her mom’s surgery became a caregiving trial run

Exercises all the time, great home designer, smart as a whip . . . her 79-year-old mom embraced the knee surgery as a ticket to more action. Being the daughter and her mom’s best friend, Cheryl prepped to provide post-surgery care . . . and then the side effects began . . . Listen to the lively interview HERE. You’ll love these two 🙂

How to Keep Track of the COVID-19 Vaccine

Your senior may not get the COVID-19 vaccine right away, even if they live in a long-term care facility. It all depends on the amount allocated to your county by the state. 

According to the CDC, once a week, the federal government

senior with daughter getting vaccinated announces anticipated allocation figures for each state. The number of allocated doses provided by the federal government is a projection and subject to change.

For instance, my county was given 3,000 doses by Jan. 13. This allocation doesn’t meet the need as our vulnerable population totals two times more than the state average. 

Keep a record of  the vaccinations with this.

The CDC is recommending that the vaccine be administered in three initial phases:

  1. Healthcare workers and long-term care facility residents
  2. Frontline essential workers and people aged 75 and older
  3. People aged 65—74 years; People aged 16—64 years with underlying medical conditions and other essential workers.
PHASE #1 PHASE #2 PHASE #3
Healthcare workers and long-term care facility residents Frontline essential workers and people aged 75 and older People aged 65—74 years; People aged 16—64 years with underlying medical conditions and other essential workers.
What should you do next?

1. Check these resources for local information.

    1. Call your local 2-1-1 (county-funded resource information line) and ask how to get your senior a COVID-19 vaccination.
    2. Check in with your senior’s doctor’s office.
    3. Contact with your state health office and see how and where they are administering the vaccine.
    4. AARP provides state-specific vaccine information.

2.Make sure your senior’s advance directive and medical proxy form is accessible by storing it in a medical document planner. Partners administering the vaccine may require verbal, email or written consent from recipients or their medical advocate/proxy.

Number of weeks until vaccine recipient is immuneThe CDC states that with most COVID-19 vaccines, you will need two shots in order for them to work. Get the second shot even if you have side effects after the first one, unless a vaccination provider or your doctor tells you not to get a second shot. 

Keep track of your vaccinations with a medical document planner.

Download the CDC’s vaccine fact sheet for more answers.

May you find joy, even amongst the pricks. 

Author Debbie McDonald is founder of Ways & Wane and lives in Norther California with her husband.

 

Five Creative Ways to Advocate for Your Parent in a Nursing Home

Understanding the world of assisted living and nursing homes can be like learning a new language. Add a bit of dementia and a worldwide pandemic to the mix and the recipe becomes messy. Advocating for your senior under these circumstances requires creativity and perseverance!

5 strategies to advocate for your senior in an assisted living facility or nursing home

1. Make use of “compassionate care visits”, available under certain circumstances. These may include end-of-life situations, but those are not the only circumstances that qualify. According to the Department of Health & Human Services Centers for Medicare & Medicaid Services, compassionate care situations include, but are not limited to:
• A resident, who was living with their family before recently being admitted to a nursing home, is struggling with the change in environment and lack of physical family support.
• A resident who is grieving after a friend or family member recently passed away.
• A resident who needs cueing and encouragement with eating or drinking, previously provided by family and/or caregiver(s), is experiencing weight loss or dehydration.
• A resident, who used to talk and interact with others, is experiencing emotional distress, seldom speaking, or crying more frequently (when the resident had rarely cried in the past).

Allowing a visit in these situations would be consistent with the intent of “compassionate care situations.” Also, in addition to family members, compassionate care visits can be conducted by any individual that can meet the resident’s needs, such as clergy or lay persons offering religious and spiritual support.

2. Don’t hesitate to speak up as your senior’s advocate. This is not the time to worry about being “liked”. Just remember to be courteous. Dozens of times I specifically spoke up about an IV. I usually say something like, “I appreciate you, but he’s an impossible stick so we need the specialist.” I imagine how I’m going to feel if I don’t stand up and ask for what my senior needs.

woman in nursing home looking outsideIn general, try to understand the situation before you begin expressing your concerns. Let’s say you are concerned that your senior isn’t getting their physical therapy. Bring it up with the most appropriate person by commenting in a neutral way: “My dad said something about not having PT. I’m curious to understand his current PT schedule and how that’s going.” You’ll likely get a much better response than, “Why is my dad not getting his PT?!”

3. Establish one point of contact at your senior’s residence. Discover the best time of day for them to talk with you regarding their updates and observations. Specifically ask, “Do you see any changes that concern you?” If you can regularly talk to the same person, consider setting up a 1-5 scale regarding how your senior is doing overall. This way you can more objectively compare day to day. Keep good notes about these conversations with dates and the names with whom you’ve spoken.

4. Set up a time to talk to your parent using video technology. It’s very hard to advocate for your senior if you cannot see them. When you see them (even if it’s just over video call) you can pay attention to things like: is their hair combed, have they lost weight or simply do they look like themselves or not. Nursing home or assisted living staff should be able to assist you with setting up these calls. Some places have a tablet for video calls that can be sanitized and shared between residents.

5. Should you have concerns about the care your senior is receiving, first ask to talk to the director of the nursing home. Keep good notes about what exactly was discussed. If you feel that the issues or concerns are not being addressed despite your continued attempts, contact the Long-Term Care Ombudsman Program in your state to assist you.

What is a Long-Term Care Ombudsman? 
An ombudsman (pronounced aam·buhdz·muhn) is a trained volunteer who acts as an advocate for residents of nursing homes, adult family homes, and assisted living facilities. Their purpose is to protect and promote the Resident Rights guaranteed these residents under Federal and State law and regulations. They are trained to receive complaints and resolve problems in situations involving quality of care, use of restraints, transfer and discharge, abuse and other aspects of resident dignity and rights.

May you find joy in loving one another well, even if it has to be from afar!

Elizabeth Dameron-Drew is the Co-Founder & President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle, Washington with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, sewing, or vacuuming, or cooking while listening to the rain and thinking about her next creative endeavor.

How to Balance Work With Your Parent’s Medical Procedure

woman waiting for senior having medical procedureDo you take PTO at work to help your aging parents? Medical procedures like joint replacements, heart procedures and cancer treatments are common among those over age 65. 

Your aging parent may exude health, especially for their age. But it is likely they will experience a serious medical procedure.

Do you need to take time off work in order to help? 

Potentially, yes. But you may be able to show up for your parent while getting some work done using the tips below.

Six Tips to Waiting Room Productivity
  • Prepare to be your parent’s medical advocate.

Before the procedure, discuss what role they would like you to play in different scenarios, both if it goes smoothly and if there are complications.

  • Create a medical document planner with your parent.

Ensure you have copies of their driver’s license, insurance cards, advance directive, medical history and medication list. Make sure you know which pharmacy they use. Both digital and paper copies are useful. Download a free starter kit here

  1. Recognize post-surgery support will take more time than you expect. Transportation to follow-up appointments, support through medication reactions and personal assistance may be needed. Enlist other family members to help ahead of time. If you are providing the physical follow-up care yourself, remember self-care so that you can show up as your best self.
  2. Research outside help, even if you think you won’t use it. 

Knowing where and how you would get additional care support gives you peace of mind and allows you to meet your other work and family commitments. Consider getting a home health aide or checking into a rehab facility. Either one takes the physical burden off family members and offers built-in physical therapy. Research providers and read reviews at the unbiased Care Compare.

Many employers offer caregiver support as a part of your benefit package. Ask your HR department to offer the Ways & Wane benefit.
  • Be present in order to honor your parent.

Try to avoid scheduling critical meetings on the day of the procedure, even if you are working in the waiting room. You don’t want to be on an important call when the doctor comes out to give an update. 

  • Prepare your hospital “go” bag. 

Take your work with you. Procedures can be delayed or prolonged. Make sure you have power cords, earbuds, snacks, water and a sweater or light blanket in case your waiting time gets extended.

Download a free guide “How to Balance Work with Your Parent’s Medical Procedure” to share on your company’s Slack or with your HR team.

Care well; work well.

Debbie McDonald is the founder of Ways & Wane, simplifying eldercare decisions for working professionals. She lives in Northern California with her husband.

How to Help Your Senior Dress with Success: These Shoes Won’t Let Me In!

Age-related health challenges like arthritis and reduced mobility mean that many seniors struggle with getting dressed.

Adapting your senior’s clothing for their current capabilities creates a win-win situation. The ability to dress themselves reduces frustration, helps maintain their independence and gives them a sense of control.

senior in assisted living trying to get shoe on
Surprising Options

The world of adaptive clothing offers things like:

  • Pants with side zippers which are easier to use than front zippers
  • Magnetic belt buckles 
  • Front-closure bras
  • Extra wide slippers that velcro completely open/shut, accommodating swollen feet
  • Socks with extra wide tops are easier to put on
  • T-shirts that snap in the back so they are put on from the front without arms being having to be raised above the head
  • Snap back duster-style dresses, eliminate the challenges pants can pose
  • Non-binding elastic waistbands on roomy and stretchy pants allow for fewer adjustments after transfers
  • Wheelchair pants with discreet flaps on the backside make bathroom trips and incontinence easier to manage
  • A wheelchair blanket that snaps to the arm handles so it won’t slip off
Adaptive Clothing Companies

Several companies specialize in adaptive clothing:
1. Canadian-based Silverts allows you to shop based on your senior’s specific condition and has a wide range of colors and patterns.
2. Buck and Buck, a 40+ year old U.S. based company, features items with simple, basic styling.
3. Authored sells streamlined stylish clothing specifically adapted as easy-to-dress.

Do-It-Yourself

Alternatively, a tailor or alterations person (usually drycleaners have this service) modifies your senior’s current clothes. For example, buttons become permanently sewn to the outside of a shirt/pants and velcro attachments are hidden right behind them.

Altering existing clothes proved the best option for my dad. He donned the same kind of button-up shirt for 40 years and didn’t like pullover shirts. Adapting his favorite shirts so that he could velcro the buttons maintained his independence and made him feel “like himself.”

If you are up for a simple sewing adventure or have a friend who is, here’s a tutorial showing how to replace buttons with velcro. 

Simple Solutions

Lastly, these 3 tips help a senior get dressed by themselves:

  1. A dressing stick makes putting on shoes, socks, shirts and pants less of a struggle.
  2. A visit from an occupational therapist maximizes your senior’s current strengths and abilities.
  3. A paperclip looped into the hole in a zipper handle makes it much easier to grasp and pull.

    May your new year be filled with joy, your zippers zipped and your velcro firmly attached!

Veteran? Get Paid or Get Money for Caring

elderly veteran One of our GoKit users found the perfect assisted living facility in Florida for her father. Although at over $4,000 per month, the payments were quite a burden. After a few months, she discovered that her father was eligible for a VA housing benefit of $2,000/month, which was retroactive to the time he moved in. While not every veteran is eligible for this benefit, the VA caregiver program expanded on October 1, 2020 to offer more services.

Veteran’s Affairs offers two levels of support for caregivers: a general program available to all veterans and their families and a more comprehensive program with more strict criteria. The VA trains regional Caregiver Support Coordinators to help you understand which program addresses your situation at no charge.

General
The Program of General Caregiver Support Services (PGCSS) provides resources, education and support to caregivers of Veterans. The Veteran does not need to have a service-connected condition, for which the caregiver is needed, and may have served during any era. No formal application is required.

While the General program offers a range of supportive services, my favorite is the FREE caregiver coaching. You receive four individual sessions over the course of 2-3 months. The coach will provide you with a workbook and help you with a variety of issues caregivers face. They will coach you in stress management, problem solving, self-care and healthy behaviors, as well as, Veteran safety, behaviors, problems or concerns linked to a diagnosis. Your assigned coach will call you for a total of four sessions, over a two to three-month period.  Learn more about the REACH VA Program. Ask your Caregiver Support Coordinator about it.

Comprehensive
The Program of Comprehensive Assistance for Family Caregivers (PCAFC) is for eligible Veterans who have incurred a serious injury in the line of duty on or before May 7, 1975 or on or after September 11, 2001. This program provides resources, education, support, a financial stipend, and health insurance (if eligible), beneficiary travel (if eligible), to caregivers of eligible Veterans.

If you are the primary caregiver, you may receive:
A monthly stipend (paid directly to you as the caregiver.)
Access to health care insurance through Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), if you do not already have health insurance.
Mental health counseling.
Certain beneficiary travel benefits when traveling with the Veteran to appointments. Note for specific details, speak to your Caregiver Support Coordinator.
At least 30 days of respite care per year, for the Veteran. Respite is short term relief for someone else to care for the Veteran while you take a break.
If you are the secondary caregiver, you may receive:
– Mental health counseling.
– Certain beneficiary travel benefits when traveling with the Veteran to appointments. Note for specific details, speak to your Caregiver Support Coordinator.
– At least 30 days of respite care, per year for the Veteran. Respite is short term relief for someone else to care for the Veteran while you take a break.
To enroll or find out which programs your senior qualifies for, find a Caregiver Support Coordinator in your area.

Be sure to check the VA Caregiver Support Hotline for updates or subscribe to receive email updates and information about VA Caregiver Support Program services.

The VA Caregiver Services may help you love your senior well!

The Beautiful Practice that will Give You Peace While Caring for Your Parent

Machines beeping in the hospital ICU.

Never-dimming fluorescent lights.

Leaving home early and coming home late.

Honoring dad’s wishes while worrying about the next decision.

The situations caring for my dad in the hospital, nursing home, and then memory care assisted living seemed to pile up into a mountain of stress. 

At the end of the day I realized . . . I need to give it up.

Not give up, but give it up. To God.

I was out of my regular rhythm and resorting to quick “arrow” prayers instead of praying God’s promises and finding refuge there.

God is constant even when our circumstances are not.

We wanted you to have this Prayer Card to find encouragement as you pray for your senior. It contains four pocket-sized Bible verses to cut apart and tuck into your mirror or keep in your car. 

Now may the Lord of peace himself give you peace at all times in every way as you help your senior in their waning phase of life.

Debbie McDonald is the Founder of Ways & Wane, an online platform that helps you help your aging parent. She lives in Northern California with her husband.