Category: Blog

How This Moving On Works

How This Moving On Works

I’ve struggled these days. Writing has always been my way of processing my feelings, my ideas and where I think I should be going. As I age, and when my contemporaries pass away, my carefully curated groups of friends help me move through this crazy world with me. I find that it becomes difficult to put down in words what my life has become. 

This life. This precious life. I am so grateful for the people who have stayed with me through the ups and downs. Too often, caregivers are left alone to do the work.  This is not unusual. As much as they need help, they push back on the help. At least that was my way. I’ve learned that this isn’t the healthiest path. But yet, we persist.  This world today is full of unease, and “going it alone” is easier in some ways.

I am “triggered” by events that have happened recently.  I good friend has made the difficult decision to place her son in a facility. He will do great. But at what cost? This is always the questions I ask myself.  I didn’t have the “luxury” to make this decision with Sophie, my medically fragile daughter. Placement, to give me respite was not an option.  She was so complicated that she would only be at an ICU level of care. That would have been her death sentence.  The care she needed was at a level that someone would need to be literally at her side 24/7.  My friend’s son will thrive where he is going.  I am excited for her to have the relief of letting go, of moving on.  But this is not an easy road.  She, I know, will be full of emotions that I can only imagine.  I have not walked this walk she takes.  New roads now taken, I wish them so much love and courage on this adventure.

Recently I’ve had 2 people pass away that I have had the honor of knowing in my college years and beyond. One was a man who devoted his life to his family and faith.  Our college years were full of fun, marching band, and late night conversations trying to solve the world’s problems.

And then there’s G.  She was my “first” roommate in college.  (The actual first was a disaster that she and my group of friends rescued me from in the middle of the night my freshman year.)  We lost touch and then reconnected later in our busy lives. This group of ladies from college are one of my strongest touchstones that keeps me grounded in life and love. G was our leader and she will be missed so very, very much.  We will Wak On in her honor.

 I remember seeing my parents’ grief while their contemporaries moved on. It’s an honor and privilege to grow old. It also is full of goodbyes. I am one who believes that those we love will stay with us.  And there will be signs that they are still with us.  These are tough times. I am tougher. Cheers to life! Peace.

How to Help the Caregivers

How to Help the Caregivers

Caregiving is hard. Caregiving someone who is medically fragile is even harder. Caregiving someone with dementia is exhausting. I don’t believe there is an easy caregiver role. There are days that seem to go by with little drama and things to rejoice, but in my world that was so few and far between. You deal with high levels of stress, sleeplessness, and some form of PTSD along with anticipatory grief. Your cortisol levels are in the toilet.

Most of my friends are Caregivers. Many don’t work for pay. Many who could work lost jobs from having to be there for their loved one. During the Covid years paid caregiving dissolved with the pandemic. Understandably companies cannot keep jobs open for those of us who need to rush home at a moments notice. My daughter died just shy of when Covid shut things down. It was a gift. I don’t say that lightly- I would do anything to have her here with me now. But the level of care she needed, and without help I would have disappeared. There would be nothing left of me. Which equates to nothing left of her- she wouldn’t have survived. With her high level of care when in the hospital (where we never left her alone,) the Covid restrictions would have killed her. I’d like to think that I could have advocated my ass off, but the reality is that she would have been too much for a hospital.

Now 5-plus years out from Sophie’s death, there are other issues besides the profound grief that travels with you. Having been out of the work force for 20-plus years, forced me to start over. Pay is low. I’m on my own financially, but with the generosity of great friends and family to help me survive these times. Ageism has raised its ugly head. Old skills don’t translate in this new world of finding a job. The job market is brutal and companies rely on online applications and AI weeding out of what could be a perfect fit. Job posting algorithms are drawn to my caregiving skills when the last thing I want to do again is to be a caregiver. My life as a caregiver sucked the life out of me. Only now am I able to feel that I could help advocate for better things for this community.

This reality sits heavily with me. My caregiver friends have lived and continue to live this horror. This is why I advocate for caregivers. They need more. They need recognition, relief, respite. Mostly they need rest. And they need us to help. How, you ask? Firstly, you can try to ask them. They will most likely say they are “fine,” or that they don’t know. It’s up to us who know them to help them.

Here is a short list of things you can do to help:

Call your representatives in government to support any and all bills that would make Caregivers lives easier. Millions of dollars of care are “free” from these individuals and we literally owe our lives and those of our loved ones to these people.

Instead of saying, “What can I do to help you” or “Call me if you need anything” say:

I’m going to the grocery store tomorrow-can I pick up anything for you?

I’m mowing my lawn tomorrow, can I mow yours for you?

I’m coming over on Tuesday to clean/pick up for you-what room should I start with? What time is convenient? Do NOT pick up before I get there!

If you are able and can handle it, offer to help them for a few hours- “I’ll sit with your son/daughter/parent for Y hours so you can get a break.”

I’m coming over to help you on Tuesday at 9am- we’ve got 3 hours to do whatever you want me to do- YOU ARE NOT ENTERTAINING ME- I’m here to clean, organize, sit with you. I’ll bring the tea/coffee/drink of choice.

If you offer to do something, DO NOT CANCEL. (Unless you are sick, then rebook another date- they definitely don’t want your ick in their house!)
However, if their loved one is sick, be flexible and reset the help date.

If you live far away:

Offer a cleaning service if you can afford to.

Gift certificates to grocery stores, big stores like Walmart, Target etc, massage places, hair salons, cards to coffee shops/tea shops/beverage shops to give them a treat. Don’t judge what they do with this gift. Most caregivers have lots of extras that are needed but encourage them to use it for themselves. (And they probably won’t!)

Delivery services- any and all are appreciated. While getting out of the house is needed, there are so many times that a caregiver cannot leave. Whether it’s a shopping need or food delivery both are appreciated. Pay for their subscription.

The big value is in giving them TIME- either with you or so that it takes a task or tasks off their very, very long agenda.

My Caregiver friends- have I forgotten anything? What would help you?

Stay tuned… I’ll add additional information as I find it.

And Caregivers- please take the help.

“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
– Rosalyn Carter

Out of the Deep

Out of the Deep

December 27, 2024

It’s Time to:
Stop Procrastinating
Start Writing Again
Live Again
Honor Sophie’s Legacy
Honor the Journey
Move Forward
Survive
Thrive
Make it Work
Work
Find My Soul’s Work
Play- Where did that go?
Exercise
Breathe
Meditate
Dance
Organize My Life
Live with Less Stuff
Purge
Honor My Pain
Honor My Grief
Find My Passion
Relax
Stretch
Take Care of My Mental Health
Take Care of My Physical Health
Take Care of My Financial Health
Take Care of Me.
Move to the Beach
Move to the Mountains
Move to the Forest
Stay. Create My Own Version of Zen
What Brings Me Joy?
Sleep Better
Live Better
Be Better.
So.Much.To.Do.
Stop Doing, Start Living

You too?

Is Anyone Still Listening?

So Much Heavy

2-26-2022

When you are already fragile, so many times things will make the exhaustion of grief that much heavier.  These times: Covid, so much division in our country, then the Ukraine’s crisis.  A mentor passes away and yet another special needs family’s child passes away. Today I light candles, meditate, listen to music, rest. So weary.

A reminder that self-care can look like many things. I do it small. Take breaths. Step outside on this bright blue with sparkly snow on the ground day. I watch the birds. Write what I can. When Sophie died I couldn’t write. It bothered me more than I’d like to admit. I’d written for years. Some people journal. I found that I couldn’t. In grief you find your way to grace. At least I did with small steps. Grief looks differently on everyone.

As I write this the song, Lean on Me, by Bill Withers starts playing.

Sometimes in our lives
We all have pain
We all have sorrow

But if we are wise
We know that there’s always tomorrow

Lean on me
When you’re not strong
And I’ll be your friend
I’ll help you carry on…

For it won’t be long
Till I’m gonna need somebody to lean on

Please swallow your pride
If I have things you need to borrow

For no one can fill
Those of your needs that you won’t let show

You just call on me brother when you need a hand
We all need somebody to lean on

I just might have a problem that you’ll understand
We all need somebody to lean on

Lean on me
When you’re not strong
And I’ll be your friend
I’ll help you carry on…

For it won’t be long
Till I’m gonna need somebody to lean on

We all need someone to Lean on. Let it be received with grace and no judgement.

If you are grieving, please go easy on you.

Jody

My Loves

To Life…And Death

Ah Life.

Just when you feel like the heavy has moved to a lighter page, something hits you.  It could be a reminder of your loved one who is now gone, or it could be the tsunami of the death of a friend. Recently I celebrated the life of a special needs Mom who was so much more than that.  She brought my YaYas together- a small group of Moms who have kids with special needs. This connection has been my lifeline for almost 30 years. It was Sam who brought us into a small room while our kids were getting therapy so that we could share stories, bond, and give advice to each other. We held each other when things got bad, we screamed into the phone when we were on the way yet again to the hospital.

So much so, that we took very short trips for years to get a break (that was a feat in itself,) and to this day we try to get together once a month.

We YaYas have so much to be grateful for with the knowledge that Sam shared with us.  We pass it down as best we can to other caregivers. She will be missed on so many levels.

So we toasted our wine (her favorite beverage) and ate amazing recipes she collected on her social media. All in honor of her.  Salute!

My YaYas

Moving Forward

Paying the Bills.

Prior to Covid, I was an aide/sub teacher at the local high school.  Our local school took me on when I was able to find the energy and time to work while Sophie was in the last years of her life.  I got divorced. I needed an income.  These wonderful people took me in.  I have a lot of experience in teaching and helping special needs students as I ran the educational program for Sophie for many years.  While this is not my passion, this skill has helped me pay my bills while I work on my passion.  These people have helped me through some of the toughest years of my life and provided for my family. 

Once again, I find myself as an aide/sub.  As I take classes in grief education, bereavement, and working on myself to help others, this gives me the grace to learn and prepare. These educators have given me a work family and income to continue to Walk On.  I am forever in their debt.

It’s been a tough few years, especially in the education and medical fields.  Hug a teacher when you can safely. Elbow or fist bump a nurse or doctor. Most importantly thank them for their persistence, strength and love of their career choices. A little grace to everyone you meet.

Those First Steps…

I’m retired… Not Really.

This is difficult to write.  How do you get friends, family, even strangers to understand that after 25 years of caregiving I am done with caregiving?  I need to make a living, like seriously, some thing that pays the bills and has benefits. I know this. But 25 years of caregiving without a paycheck is not what businesses want to see on a resume.

So I get creative on my resume.  I give deep thought as to what I really want to be. What I want to contribute to the world, what would feed me now. I have been fortunate to be an aide/sub at the local high school. These wonderful people have kept me afloat mentally, physically, and financially for a few years now. So grateful.

People freak a bit when I say I am interested in Hospice, in the journey of Death and Dying, in Grief and Bereavement. The connections I have made in the Grief Community leads me there- I want to help the caregivers as they journey through this part of living, dying, and afterwards with their loved ones. The western world for the most part does a bad job of helping in this portion of living.

Having been a part of the medically fragile world for so long, I see so many gaps in the care of the caregiver.  They are a stubborn group, facing unimaginable stress and trauma, but will do anything for their loved one’s peace.  They think of themselves last- even though they’ve been told a million times self-care is important, to put their mask on 1st, you can’t drink from an empty vessel, you can’t go on this way-what happens when you can’t do it anymore? But they do.  I did.  My body is completely falling apart.  I’m sure my mind is not far behind.

After the death of my sweet daughter, I spent time and energy trying to understand this journey.  I gave myself grace for a time, then out of necessity I worked.  Then Covid hit. Another pause. In this pause I spent a lot of inner work to figure out what I wanted to do. I volunteered at a Hospice, learning the ins and outs of the business as best I could from “teachers” who had walked my path before.

I am a Certified Grief Educator through the program by David Kessler. That name may sound familiar- he worked with Dr. Elizabeth Kubler-Ross. Dr. Kubler-Ross wrote a number of books, one of her most known is “On Death and Dying” and the 5 stages of death.  The stages have been changed and analyzed over the years; most importantly David Kessler has reiterated that the stages are not linear.  David has written books with Dr. Kubler-Ross, and since her death has gone on to be a prolific writer, speaker, and wisdom sharer regarding grief, trauma, and the dying.

I’m now an ordained Minister through the Universal Life Church Ministries. What does that mean? It means I can marry people, reside over ceremonies, and follow my desire to help people. While this is a future ability, it is not my current focus. I wish to help caregivers.  

I’ve worn many hats on this journey.  I’ve been a caregiver, yes, but so much more.  I’ve been a doctor/nurse, a teacher, an advocate, a mentor, a writer, a “McGyver”, a photographer, a holder of memories, an encourager and mostly a Mom. Time to take these skills to a new level.