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.

New med making someone act different?

Every time they go to the doctor, a new medication is prescribed.

Emergency room visit? New medicine.

Rehab nursing home? New medicine.

Home health? New medicine.

As their medical advocate, approach it this way to prevent trouble.

To stay on top of their latest meds, do these three things:

  1. Before leaving the doctor’s office, the hospital or a nursing home, ask for a printout of current medications.
  2. Take a picture of their list of current medications to keep on your phone.
  3. Print this medical tracker to write down any non-prescription supplements and attach the medical professional printout.
  4. Add the current medicine list to your medical document planner that includes vitals, immunizations, medical history and advance directive.

What kind of process do you use to track medications? Reply to this email—we’d love to learn from you.

Sibling Relations

One sibling usually takes the lead. How can others get involved?

caregiver woman worried

Sibling relationships as they relate to care for aging parents—t’s pretty much the perfect storm of potential conflict. A dynamic that taps into long-term emotional wounds, inheritance concerns and parental/sibling life memories going back many years. In the midst of the conflict, especially if you feel like you’re the one holding all of the responsibilities, where can solutions and practical coping strategies be found?  

 

Let’s begin by looking at three reasons why siblings may avoid helping with caregiving:

  1. They don’t think/see that there’s a need

  2. They don’t see how they can help

  3. They are afraid of doing a “bad job” or messing up

 

So let’s break these down into strategic responses…

 

They don’t see a need. How about…

  • Send a calendar invite for specific times they can fill in.

  • Set up a regular whole family meeting (including spouses) to review the situation. Then make a date for the next whole family meeting.

  • Start a family message thread or a private family Facebook group providing regular updates and encouraging dialogue.

  • Create a shared google document outlining updates, questions and challenges.

  • Use a website like Caring Bridge or Lotsa Helping Hands to outline needs

 

They don’t see how they can help. How about asking them to do something specific, like…

  • Take over bill paying, banking and/or tax management.

  • Cover the cost of a bi-monthly housekeeper or helper. (One family I know had all the kids and grandkids pitch in for a year of housecleaning for their great grandma.)

  • Have a meal delivered every week (or every so often).

  • Gift a membership (massage, yoga, etc.) for the family member who does most of the care.

  • Research solutions to various needs, e.g. find a used wheelchair, the best shower chair, etc.

 

They might be afraid of doing a “bad job” or messing up. How about encouraging based on these perspectives…

  • Accept siblings for who they are and expect different approaches.

  • Try to respect other’s perceptions and find opportunities to compromise.

  • “Decide to believe that everyone is truly doing the best that they can. We’re all a little bit right and a little bit wrong.” – Life Coach Mary Remmes

  • Assume positive intent.

 

At the end of the day, we can only control how WE respond. Caregiving isn’t easy, so extra grace is hugely helpful—all around.

May you find joy in loving one another well and assuming the best

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 work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

Marriages Affected by Caregiving

couple laughing

Don’t let caregiving kill your marriage

No one needs to tell you that caregiving can be all encompassing, but if you are giving 100% of yourself to caregiving for your senior then what is left for your self-care? 

And, if you aren’t practicing self-care, it also means there isn’t care for your partner either. 

No one wins if you let caregiving cost you your relationship with your partner.

My dad was known to say, “It’s hard to remember that you set out to clean the swamp when you are knee deep in alligator sh#!” In the thick of it, it can be hard to see a way out. Implement these 5 practical ideas, beginning with self-care for you, the caregiver:

  1. Take 15 minutes just for you every day.

University professor and researcher, Francis Lewis suggests that caregivers spend (at least) 15 minutes alone everyday doing something for themselves. Doing so “creates a place for your peace and your joy”. Lewis says, “It might be shooting hoops, it might be calling up friends, it might be having a cup of tea, it may be walking around the neighborhood.” Whatever it is, treat yourself “like company.” Recharge your spirit with a time of meditation or prayer.  

2. Include your partner in caregiving decisions.

You may think that decisions only impact you since you’re the caregiver, but it’s likely that your partner is very much impacted by them too. Include them in decisions and ask for their practical help and if they say “no” respect that. You need your “no” respected too.

3. Be purposeful about scheduling regular time with your partner.

Once you’ve scheduled time, honor that time by showing up and being fully present, giving your  partner more than just your “leftovers”. Let it be a balanced time of listening and sharing, away from your caregiving role. 

4. Show appreciation to your partner. Regularly and sincerely.

Your senior may not be expressing their appreciation to you or for you which may make you feel like hoarding your appreciation words, as though you can keep them for yourself. Be generous about expressing gratitude for your partner, to your partner. Let them catch you praising them in front of others.

5. Connect with a caregiving community.

Investing time in a supportive community group that understands the day to day challenges of caregiving is invaluable. An outlet for your own caregiver feelings and challenges provides you support without your partner having to hold the full weight of that need. I’ve gathered a list of my favorite groups on Facebook and Reddit.  

Are you unable to see how to care for yourself? Are you experiencing the following challenges?

  • Ignoring own health problems 
  • Not eating a healthy diet for lack of time 
  • Overusing tobacco and alcohol when stressed 
  • Feeling resentful toward the older adult in your care 
  • Holding in feelings of anger and frustration and then being surprised by outbursts directed at the care recipient, other family members, co-workers and strangers
  • Feeling sad, down, depressed or hopeless
    Listed by Denise E. Flori, PhD, LMFT
    If these are your struggles, seek professional help from a counselor.

May you find joy in loving one another really well!

How to Quickly Decorate An Assisted Living, Nursing Home or Hospital Room

How to invite healing joy into your senior’s room

Does your senior’s nursing home room feel depressing? Did the balloons deflate and the flowers die after a day in the hospital? Does their room in the assisted living facility still look kind of generic even after adding a few photos on the bedside table?

If you feel that way walking in, think how they feel living there.

Sometimes we hesitate to decorate, giving these excuses:
  • My senior won’t be in this room very long.
  • The facility restricts what we add to the walls or room.
  • I don’t want personal items to get in the way of medical staff and equipment.

Overcome your internal excuses and create an atmosphere for healing and joy, even in a nursing home or assisted living facility!

Choose one of these simple products and ideas to transform your senior’s room.

  1. Removable “sweet dreams” decal on the wall in front of the bed wishes them good night
  2. Huge paper flowers/decals or removable potted plant decals (these don’t need water) fill a space
  3. Make a custom placemat with photos of people they love to use on a tray or at the table 
  4. Inspire conversation with this “Who I Am” poster and hang it with these damage free wall clips
  5. Wall mounted or desktop adjustable sunlight lamp may improve the mood
  6. Have a photo blanket made, even just lap size
  7. Put up a suction cup window-mounted outside bird feeder
  8. Put up sparkle lights around a window or door frame
  9. Set up a digital picture frame with rotating pictures 
  10. A diffuser with essential oils offers aromatherapy and a warm light. (Not recommended for shared room situations.) 
  11. Tack a beautiful  poster on the ceiling above their bed. This scene makes you feel as though you are laying in a forest looking up through the trees on a sunny day.
  12. Hanging a quilt on a wall can fill a big blank space and helps create a cozy atmosphere. These quilt hangers attach with removable adhesive strips
  13. The management of a real fish tank is too much, but can be relaxing, so why not try a lamp/virtual ocean fish tank?
  14. This temporary stick-on wall quote is a reminder to spread joy
  15.  Window suction plant pot brings the outside in
  16.  Rugs are trip hazards, but these peel and stick tiles can look like a rug.
Consider some of the benefits of temporary decorating:
  • Gives you something to do “together.” Bring some paint chips and ask which colors they like. Psychology Today says, “Some colors, like shades of yellow, are like the sunshine. They can boost one’s mood and create a sense of optimism. Shades of blue can be calming. Others, like red or a secondary color such as orange, can be jarring.” Use those colors as you choose decorations. Or ask them which quote they like better for their temporary decal or about their favorite pictures for the lap blanket.
  • Becomes a conversation starter for staff or visitors.
  • Creates a welcoming atmosphere. If the decor makes staff and visitors smile, that brings more joy to your senior’s room.

Decorating your senior’s room fills it with personalized brightness and joy. Even if you just choose one of the items above, it can have a compounding effect, which is needed in a nursing home, hospital or assisted living facility.

Want other gift ideas for your senior? Check out these 7 thoughtful presents.

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.

 

Your Parent Forgets Your Birthday

You didn’t expect your parent to show up on your birthday with a gift and a card.

After all, you sometimes wear a name tag so they remember your name. And yet, the first time your elderly parent

parent with dementia forgets birthday :(forgets your birthday, well, it can be painful. It amplifies the loss happening right in front of you and is a very personal reminder of the new relationship with your parent. For many people, this strikes a painful chord.

To support you in this, here are 5 ideas to help you weather the next forgotten birthday.

  1. Expect your senior to forget and mourn the loss that represents, but don’t stay in that sad place too long.
  2. Print the letter below, put it in an envelope and give it to yourself—from your parent. 
  3. Gather all the memories of times your birthday wasn’t forgotten and take time to savor those memories. Maybe take a few minutes and write them down. 
  4. Put an extra candle on your dessert, from your parent.
  5. Remember that you are loved, today, tomorrow and yesterday. 

Celebrate YOU by sending yourself this card!

The Unsent Birthday Card. . . From Your Parent

You transformed my life with your birth. Hidden in the recesses of my mind, I know it’s the anniversary of your birthday. Somewhere in my mind, I remember your birthday parties, your smiles, your fingers in frosting, the brightly colored cards, your gifts, the yellow crepe streamers, the balloons bouncing, the flickering candles. My love for you was on full display in the way we celebrated your birthday. 

Today is the same as two yesterdays ago or two days from now—I don’t know. I count on you to know what day it is. I want to celebrate this birthday for you, but I don’t know where the candles are. So will you find them for me? Will you put an extra candle on—from me to you? (You should probably light it for me too since people get nervous when I have the matches.) And then, when your wish-breath blows the candle out, know that in that hidden place in my mind, my love for you is on full display.

Happy Birthday!

May you find joy in loving one another well today and tomorrow and tomorrow. 

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 work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

 

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 🙂