When Things Fall Apart
A practical guide for navigating life's hardest moments from those who have been there. Practical support and what-to-do-checklists for when you or your loved ones face illness, loss, and death.
What to do in the first 2 weeks after a cancer diagnosis.
How to handle the outside world when you are sick.
What to do when you, the parent of young children, is sick.
Ways to make hospital stays better.
Mastectomy/Lymphadenectomy
For Friends - Say this, don't say that!
For Friends - How to plan a helpful meal train.
Hospice (coming soon).
Grief.
Your parents need assisted living.
The First Two Weeks After a Cancer Diagnosis
The days following a cancer diagnosis can feel overwhelming. When my husband was diagnosed with stage 3 cancer when he was 35 and I was 4 weeks pregnant and 30, we didn't know what to do first. Four months later, my 35 year old sister, and mother to twin 6 month olds, a 2 year old, and a 4 year old, was diagnosed with stage 1 cancer.
Navigating cancer with babies and young children, we realized that most resources were not geared to us or didn't even exist. What we needed was someone to tell us "do this now" and "this is what you do and what you say." These lists are what we needed.
Here is what matters most in these early days as you begin to process this news and take your first steps forward.
General but immediate action to take:
01
Get a second opinion
Get a second opinion at a major cancer research hospital (Memorial Sloan Kettering, MD Anderson). Their protocol can be carried out locally if you decide to go with them. Doing so can fully change the course of your treatment.
Remember that a good doctor will suggest you get a second opinion and may even suggest doctors for you to see.
You can get a second opinion over the phone/zoom once the doctors have your records if you are unable to travel.
02
Move quickly, but not immediately
Take your time in getting opinions and deciding the right course of treatment. Some treatments preclude you from getting future treatment or being in studies and trials. Make sure you know all your options prior to doing anything major.
Doctors will push you to move quickly, but unless you are in imminent danger (like operating in the first 24 hours), you can say you want a second opinion prior to operations or the start of treatment.
03
Where to get a 2nd (or 3rd) opinion
You must get a second opinion. You will want to speak with a major cancer research hospital, not just another local hospital. You want a doctor and hospital who sees this disease multiple times a DAY, not a week, a month, or a year.
Go to MD Anderson and Memorial Sloan Kettering’s web sites, link below, or call the appointment number. Make the soonest appointment possible (you can always cancel).
You will need to have the pathology and test results sent from your hospital/doctors to MSK/MD Anderson. The cancer centers will help you - you tell MSK/MD Anderson what hospitals you have been treated at and they will request the records.
04
You are your own advocate
You are your own (or your loved ones) advocate. No doctor, social worker, or hospital is going to do the leg work for you. No one will care as much as you do. You often have to annoy them into doing things. Don’t feel bad, its just part of the deal.
05
Hurry up and wait
There is a ton of hurry up and wait. You will be told to make an appointment quickly, get tests done quickly, speak to people quickly, and then you will wait ages (days to weeks) to hear back. This is normal.
06
Never go to the doctor's alone
Always have two people in the room when the doctor is updating you. Tell them to come back if you are alone or record the appointment on your phone. Make sure you take notes or record what they say. Two people can easily walk away with vastly different ideas of how a meeting went or what the doctor’s suggestions were or even what survival rate is.
How to handle the outside world when you are sick:
The outflowing of support, phone calls, texts can be wonderful, but it can quickly become overwhelming and even annoying! It is important to establish clear boundaries for family and friends. People often seem to lose all sense of normal behavior and appropriate boundaries.
Pick a point person
  • The name of the game is to prevent people from annoying you and your family.
  • Pick a point person to send all group communications. This should be someone you feel comfortable being honest with and who has the ability to act as a gatekeeper to the rest of the world. It's generally best for a close friend, cousin, or family member to do - but not your spouse, children, or parents.
  • The point person will send weekly or monthly updates, meal train sign-ups, and visiting/helping sign-ups.
  • The point person should make it clear that when bringing food/doing errand/driving kids it is not a social call. People will want to come in and talk. If your point person makes it clear that they can’t do that, they won’t. (See the section of meal train rules for more info!)
People say very odd things. . .
  • People, both strangers and good friends and family members, may say incredibly odd things. Prepare for it and try to find the humor in their comparing your situation to their 98 year old grandmother or dog (I promise, promise someone will do it). They mean well, they just have no understanding.
  • Set up an email folder for friends/condolence/“I can’t believe it” emails. You can read them when you are good and ready and won’t have to deal with looking at them in your inbox and feeling bad you haven’t replied. Even better, you can have your point person tell people to send actual paper letters.
What to do when you, the parent, is sick:
It is very hard for people to truly understand what it is like to face cancer or a serious illness when you have young children. Though your parents, grandparents, aunts, and uncles may have been or even be sick, it is a completely different beast when you have babies, toddlers, and school aged children to take care of.
We sought the support of grief therapists, social works, psychologists, and psychiatrists. Get help from the experts! There is no need to reinvent the wheel!
Many good intentions can feel not only unhelpful, but even unkind. You are not alone in feeling this. Your point person can add some of this to their email updates.
How to tell your children
After talking to many therapists and social workers, we found the best course of action was to tell your children what was going on by using the correct words (cancer, tumor, chemo, etc.) in age appropriate language.
For example, “Mommy has cancer. They are a lot of kinds of cancer, like there are lots of kinds of tummy bugs. Some are very bad and some aren’t so bad. Sometimes when someone is very, very old, they can die from cancer. Luckily, mommy is very healthy, very strong, and isn’t old. We have the very best doctors in the world. They are going to take the sick part out and give her strong medicine called chemotherapy to make her better. She will be very tired when she gets the medicine, but the amazing doctors are going to work very hard to help her get better and heal.”
Use the words that scare you
You cannot hide cancer, so don't try to or lie to them about it.
When you use words like cancer, chemo, and even die, they will be prepared for when they inevitably hear it on the playground or overhear it a soccer game and won’t freak out. Both adults and children will say peculiar and scary things to your children (not out of malice, but out of foolishness).
You will be more upset and worried about this conversation than they will be – taboo topics for adults are not taboo for them.
They will know that old people can die from cancer, but will believe what you have told them - that you will work your hardest to get better.
They will trust you and know that you are telling them the truth. If you don’t use those words, they won’t know what to think when they hear it from friends and may not trust what you tell them.
So many gifts
Try to limit the number of gifts random strangers and even friends bring for your children. In the beginning it can be helpful, as they will keep the kids occupied, but after awhile it gets strange and affects the kids.
Playdates
People will want to take your kids on playdates, have them sleepover, and generally get them out of the house, which can be incredibly helpful!
Just remember that kids will also want to be home the same amount they are normally. Keeping things as normal and consistent as possible will help them feel safe.
Outside help
Make sure your children have a therapist or counselor to speak with. Doing so will NOT make them more nervous or upset, rather, they will feel safer because they have support. Most therapy with young children is play based, so they don't even realize they are seeing a therapist or counselor.
School
Your children’s teachers, coaches, and school administrators all need to be told what is going on. They will be able to help and support your kids – do not leave them in the dark.
Hospital stays:
Hospital stays cannot be avoided, but they can be made easier!
Bribery
Bribing nurses with cupcakes and cookies really does help your care. Have someone bring them or order them to your floor at the beginning of your stay.
No jewelry
Do not wear your jewelry or bring anything valuable to the hospital. Wear a plain band instead of your wedding rings. Things do disappear, especially when you are losing weight and finger sizes change.
Comfort
Bring body wipes, face wipes, hand lotion, and a good smelling room spray. Feeling clean and nice makes a difference and you cannot always shower or get to the bathroom.
Decorate
Make yourself more comfortable. At one point, we brought in a lamp because the lighting was so dreadful and depressing.
Hang up pictures of your kids on the bulletin board – a not-so-subtle way of reminding people you are a parent of young kids.
Visitors/Helpers
It is often hard to be alone in the hospital. If you are recovering from treatment or an operation, it is often best to have someone with you who can call the nurse or hand you a drink.
For each hospital stay, have your point person send out a sign-up schedule (to a select group) and have them sign up for shifts. Always fill the schedule two days beyond you anticipated leave date. You can always cancel because you have gone home, but its very hard to get last minute help when you are hopped up on painkillers.
This ensures you have someone with you and allows your spouse to be with the kids, especially overnight. The hospital will provide a roll-a-way before for your helper to sleep on.
Meals
It it not uncommon to find yourself or your helper to find themselves in a hospital without any food or cafeteria. Most hospital cafeterias close by 6pm or 9pm.
Before your stay, check and see who delivers to the hospital and what time they close! Also, bring snacks and bottles of water.
Mastectomy/Lyphadenectomy checklist:
Often, coming home from the hospital after major surgery can be hard. While absolutely amazing, surgeons and oncologists don't know exactly what is needed at home to make a recovery smoother. Here are some tips!
1
Childcare/Help
This is a major operation! No matter what anyone tells you, you will not be up and about in 2 weeks. I waited to have my prophylcatic mastectomy until my youngest could get herself into her car seat at 3, as I could not lift her.
  • You will need childcare and cooking/meal help for 3-4 weeks.
  • Someone should be in the house with you the first 1-2 weeks because you will be so hopped up on meds and will need help getting to the bathroom.
  • If you can hire a nurse or have a friend stay the first two nights at home, I highly recommend it. Your family will be sleep deprived and you will need assistance and meds every few hours.
2
Drinking
Following your mastectomy, you will be unable to use you arms (you will be like a T-Rex) or lift anything (including a cup) for up to 3 weeks. Buy these things!
  • 2-3 cups with lids and straws
  • Box of bendy straws
  • Bendy straws are easier to use.
  • Bed tray.
3
Pillows
You will need to be at an angle in bed and won’t be able to use your arms to move yourself around, so definitely get a wedge pillow, “husband pillow”, heart arm pillows (which are a life saver), and a small head pillow.

Amazon.com

Bedluxe Wedge Pillow for Sleeping, Adjustable 9&12 Inch Foldable Bed Wedge Pillow Set, Orthopedic Memory Foam Triangle Pillows Wedge, 7-in-1 Elevated Pillows for Leg and Back Support, Velvet

Introducing the Ultimate Wedge Pillow Set – your gateway to heavenly slumber and revitalizing rest! Crafted with passion and precision, our 2-piece set is designed to elevate your sleep experience to unparalleled heights. Say goodbye to tossing and turning, and embrace the allure of a truly rejuv...

Amazon.com

Wolf Essentials Microbead Bolster Tube Travel Pillow - Compact Neck Roll Pillow for Airplane, Car, or Home - Soft Lumbar Support Pillow – Charcoal

Experience Ultimate Comfort with the Wolf Essentials Microbead Bolster Tube Pillow The Wolf Essentials Microbead Bolster Tube Pillow is the ultimate companion for comfort and support, whether you're at home, in the office, or on the go. Filled with soft microbeads, this versatile pillow molds to ...

Etsy

Set of 2 Mastectomy Surgery Recovery Pillows for the Axilla or Underarm to Relieve Pressure - Breast Surgery Axilla Pillows

A set of mastectomy/breast surgery Recovery Pillows - one to support each arm Recovery Pillows were designed to relieve underarm pressure after breast surgery. These are soothing and take the pressure off of the sensitive surgical site. These are heart-shaped and covered in a silky, teal removable cover. The cover is machine washable. It is stuffed with microbeads to allow the pillow to adjust to each individual's comfort needs while still maintaining the needed support required to help with

4
Bathroom
  • Shower Chair.
  • Hand held shower. We didn’t have one and just bought a new shower head with one attached.
  • Body and face wipes. You will feel much better when you are clean and will need these!
5
Clothes
Getting dressed will be tricky when you cant move your arms, so a few new clothes can help.
  • I did not buy a lot of specialized “mastectomy” clothes. I found the drain belt and button up shirts worked just fine.
As a friend, don't say that, do say this:
We all have the best of intentions, but people often loose all sense of decorum and what is appropriate to say to people who are sick or have a loved one who is sick or dying. And sometimes we just put our foot in our mouth. Here are some tips so you don't say the wrong thing!
Don't compare them to your grandmother or dog!
I am sure you loved them very much, but it's not the same. They are young and not an animal.
Don't tell them about your cousin's neighbor who died of the same thing!
If you must, tell them about someone who lived.
Do not say "everything happens for a reason."
It's just not comforting or helpful.
Kindly do not suggest different or new treatments that you read about on the internet.
Unless you are an oncologist or expert, stay out of their treatment.
Don't tell them "I cannot believe this is happening."
It doesn't help.
Do tell them you are sorry they are going through this.
Do tell them you love them.
Meal Trains
Meal trains can be incredibly helpful or incredibly annoying and following these rules will help you to set up a meal train that helps the way you want it to!
Volunteers
Use Sign-up Genius to arrange!
A general email asking people to volunteer only leads to confusion.
Schedule
Alternate days! Most people bring A LOT of food and one quickly runs out of refrigerator space. I suggest having dinner delivered on Monday, Wednesday, and Friday.
Preferences
Indicate any food preferences/allergies and favorite restaurants on the sign-up. If you don't, the volunteers will contact the person receiving the food and it gets really annoying to field a bunch of emails/text about what you want.
Delivery
Put a large cooler on the front porch or side of the house. Tell people to drop the meal there on the sign-up genius.
If not, everyone will try to come in and say hello, which results in the recipient having to talk to and entertain people, which is the opposite of helpful.
Timing
Indicate a specific drop-off time on the sign-up. This allows the recipient to know when the food is arriving and if they want to see people, they can open the door and say hello.
Reminders
Volunteers forget they signed up more often than you expect. Make sure they sign-up sends reminders!
Hospice and knowing a death is coming
When Your Parents Need Assisted Living or Memory Care
Making the decision, and getting your parents to agree to move into assisted living, or memory care is difficult even when you know it's the right choice. This transition marks a profound shift in your relationship, and it's normal to grieve while simultaneously seeking the best care for your loved one. It's also really hard to become the adult in the relationship, so be patient with yourself and your parents.
1
Recognize the signs
Trouble remembering to take their medications, wandering, forgetting to shower or neglecting usual hygiene habits, kitchen safety concerns, having a hard time remembering correct words, and telling repetitive stories are just some of the signs that your parents need more help.
2
Start the conversation
Calmly telling your parents you are worried and introducing the idea of moving is a good place to start. Most parents push back on assisted living, so try to sell the positives like being able to eat at the restaurants, activities with friends, and not having to clean!
Arrange to have you and your parents tour facilities. Companies like CarePatrol are free of charge to you and they can negotiate the upfront "entrance fees." Once you give them you parameters, they will set up tours.
3
Don't correct them!
If your parents have mild cognitive impairment, dementia, or Alzheimer's, don't correct them when they are wrong. If they think they are in Miami and they are really in suburban DC, what harm is there in letting them think that? If they ask about a friend or relative who died 5 years ago, just say "oh they are doing well." There is no reason to upset them when they are just going to forget again. Try to be patient and kind!
4
Keeping them safe
While I was trying to convince my parents to move to a continuing care community, I wanted to keep them safe. My father tended to wander, so I put an AirTag under his shoe insoles. He often left his keys, wallet, and phone when going for a walk, so I needed to be able to track him from a place he wouldn't notice or lose.
I also bought him hats, shirts, and sweaters from his alma mater (Gonzaga high school in DC), knowing that if someone found a man wandering in purple Gonzaga gear, they would help him.
5
Handle finances and legalities
Review insurance coverage, Medicaid eligibility, and legal documents. Who has power of attorney? Do your parents have healthcare directives? Who has access to their bank accounts and where are the accounts? Who is the beneficiary on their accounts?
Make sure you know what they have planned for and, if they haven't planned, get thyself and them to a lawyer's office!
6
When they move, bring their things
Bring familiar items: favorite photos, beloved chair, art, meaningful objects. These touchstones provide comfort and help create continuity between their former home and new environment.
7
Manage the transition period
The first few weeks are often the hardest. Visits may be emotional. Work with staff to establish visiting routines that work for everyone. Your parent may adjust better than you expect once settled.
8
Set up auto-ship
If you parent is in memory care, set-up auto-ship on Amazon to have adult diapers, soap, toothpaste, hearing aid batteries, bed pads, etc. to be delivered monthly. It will give you one less thing to manage.
9
Dog toys are human toys
Many people with dementia get bored and fidget, but as the dementia progresses they also lose their ability to know what is food and what is not. I discovered that dog toys were the perfect fit! They are safe to put in your mouth and still entertaining.
10
Take care of yourself
Caregiver guilt is real and overwhelming. You are doing this so that your parent is safe! No regular person can keep eyes on someone 24 hours a day and that is what they need. Remember that choosing professional memory care is an act of love, not abandonment. Seek support groups for adult children navigating this transition.
Grief
Grief is always a part of this. Grief because someone died. Grief because your future changed. Grief for the life you had. Grief for the life you had planned.
There is no need to do go through grief alone. We don't talk about it enough. It affects every part of your life and does not follow a neat order. The 7 stages of grief by Kubler-Ross were about the person who was dying, not those left behind. So, they are likely not applicable to you. Find a grief therapist! Regular therapists are great, but grief therapists are specialists.
Here are some resources we have found helpful:
Books:
Instagram:
  • @untanglegrief
  • @optionb
  • @refugeingrief
  • @thememorycircle
  • @hospicenursejulie
  • @iamdavidkessler
Podcasts:
  • All There Is with Anderson Cooper
Therapists and Resources:
This website was born from a number of checklist's I made to help others, so they didn't have to reinvent the wheel. A good friend suggested turning it into a website so I could help even more people.
I hope this does help or at least bring you comfort that you are not alone and that you will also get through this.
Feel free to reach out with any suggestions!
Johanna Howe -Help.When.Things.Fall.Apart@gmail.com