Search

Finding Freedom

Living Forgiven and Free

Month

January 2018

Let me know if there’s anything you need!

This is for people who are going through a difficult time and could use the help of your community or for people who know someone who is.

First, let me talk to the people who are going through a life changing crisis. I get it. I have ALS, a fatal neurodegenerative disease that has turned my life upside down. I’m a proud woman, my husband and I have done everything on our own. We don’t need help. Have you told yourself a similar story? I don’t want to bother anyone, we’re doing okay. I know that story too.

Three words: get over it. Three more words: you need help. Here’s another way to look at it. Remember how good it feels when you help someone else? Well, don’t be a jerk and deny your friends that experience.

Now for the friends who want to help but don’t know what to say or do. The worst thing you can say or do is nothing at all. I know it’s hard. It’s awkward. Here’s a start, call or text your friend and arrange a time to visit and say, “Good to see you!” That’s a better greeting than, “How are you?” Save that for later. If you don’t know what to say, be honest. “This is awkward, I don’t know what to say. But, you’re my friend and I’m here for you.” Love your friend enough to get over your uncomfortable self.

With all good intentions you may say, “Let me know if there’s anything you need.” I know you mean it. I’ve said it too. But the problem is, it puts the responsibility on the person to come up with something. And, it’s difficult to accept help so you probably won’t get the text asking for it.

The Practical Stuff
Everyone and every situation are different. A person recovering from chemotherapy has different needs than a person who has lost a loved one. Yet, some of of the social and household needs are universal.

Social Needs

  1. Text, send a card, or call. Let him or her know you are thinking about them. Feeling forgotten or isolated is awful.
  2. Arrange a visit. You don’t have to stay long. Watch for cues. If she’s falling asleep, take the hint. If he’s not feeling well, don’t take it personally. The important thing is that you showed up.
  3. Keep texting, stay in contact. Even if you don’t get a response, stay connected.

Household Needs

  1. When you stop by for a visit, take a look around. Is the yard a mess? Tell him you’ll be there Saturday morning with a yard crew. If it’s a prolonged issue, rotate with some buddies and take care of the lawn for a few months.
  2. Visiting for a few hours? Check the laundry basket. Tell him you’ve got time to wash, dry and fold a few loads.
  3. Bathrooms gross? Grab the cleaner and clean it. Bring a friend and clean the whole house.
  4. Food, everyone appreciates food. Be the point person and email coworkers and friends, share preferences and restrictions. Bring freezer-friendly meals with the appropriate number of servings in disposal containers. Label the lid with what’s inside and the date.
  5. Don’t forget the spouse, they are carrying a huge burden. Get them a gift card for their favorite activity and offer to stay while they go out. For example, my husband loves to golf, but feels guilty leaving me alone. So, you can come hang out with me while the guys go Top Golf. It’s a win-win.
  6. Are the kids going bonkers? Take them to ice cream or a movie. Dog getting ignored? Take her to the dog park. Notice the dog food is running low? Pick up a bag.  

Personal Care. I can only speak for myself on this one. Well, because it’s personal. You will know what your close friend needs.

  1. Arrange for a pedicure. If you’re friend can’t leave the house, bring the pedicure to her.
  2. Pluck her unibrow or Nair her legs.
  3. If you’re a natural caregiver, learn the morning and/or evening care routines and take over for a day.

I can’t speak for everyone in need. For me, it’s hard to ask for or accept help. But, I know I need it. I’m probably not going to ask, so just do it.

What should you do to help a family who needs a hand?  Consider what you like to do — cook, pray, fix things, sit and visit? Do something you enjoy and it will be a natural extension of yourself. The most important things are to do something and find a way to stay connected.

I’m Forgiven and Free and grateful I have friends who show up and help me.

Life or Death

Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.

I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak.  I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit. 

Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.

Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.

People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.

Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled.  Downright shameful.  I didn’t realize the magnitude or consequence until I was one of them. 

To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.

Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference. 

Are you living? I  mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.

I’m Forgiven and Free and living the life given to me

Blog at WordPress.com.

Up ↑

%d bloggers like this: