Category: Caregiver Toolkit/Tips

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

Caregiver Toolkit/Tips

In this section you’ll find words of wisdom from myself and other caregivers.  I’m hoping to give you tools to make you and your loved one’s life easier and to find links to others who walk in similar shoes.

I was a caregiver to my medically fragile daughter, Sophie, for 25 years. There were so many times I wished for wisdom when all that was there for me was the feeling of traveling alone.  Her rare disorder created some of this aloneness, but prior to the internet it was a lonely journey.

Let’s change that landscape together. If you are a caregiver seeking some wisdom, I hope you find it here. I welcome feedback and your own links to share.  My biggest goal is to find quick, easy tools for caregivers to take care of themselves. This is not intended for medical advice, to bitch about your horrible life, or that you found religion.  Fill your cup. Thanks for stopping by.

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.