I’m often asked: “Jen, how did you do it?”
I reply: “What do you mean?”
They say: “How did you do it, you know, caregiving?”
Here’s the Secret.
You have medication schedules (excel, phone, in the cloud) available at a moment’s notice. Meds are organized to make it easy for anyone to administer. The pantry and fridge are stocked with staples that provide comfort and healthy nutrition post-surgery, during chemotherapy and radiation treatment. Your iPad, tablet, Fire or Kindle is filled with books and articles about cancer, recipes to try, and complementary therapies.
Your brain now holds large amounts of information specific to your loved one’s cancer, including medical acronyms and survivability stats, which allows you to carry on a semi-intelligent, “give it to me straight” conversation with any member of the care team. Speaking of, you have their numbers and emails loaded in your phone and paperwork at the ready should you find yourself in a “grab and go” situation – which happens more than you desire.
Organized, Conscientious, Sensitive, Proactive and Concerned. You are ready and researched for appointments and you worry about the ambiguity a cancer diagnosis brings to your family life.
Oh, and you’re doing all of this while working, taking care of your home, the bills, kids, parents (insert other items), and the beloved family pets. You are a high-achieving, Type “A” caregiver.
You Do it Because You Love
Whether you have a Type A or B personality, whether you are an ENFJ, ITSJ, The Protector, The Scientist or The Idealist – the reality is that when you find yourself caring for a loved one, you will take whatever steps to make sure their needs are addressed.
You’ll strive to follow the Golden Rule.
And then you learn it’s the Platinum Rule that is more important and more challenging: “treat others the way they want to be treated”.
And you’ll do the very best you can to do right by your loved one.
Introducing The Caregiver’s Credo
Leaning loosely on the tech adoption lifecycle, I’m an early adopter when it comes to caregiving. (The average age of a caregiving spouse is 62.3 years old)
It’s not something I’d like others to experience, yet the data shows caregiving responsibilities among younger generations is increasing.
I’ve spent the majority of my thirties and half my forties – a total of 11 years – in the ebb and flow of caregiving. That’s a lot of navigating serious stuff. It’s only been in the past few months, of my processing the loss of Jeff, have I truly realized the magnitude of the impact caregiving has had on my life, my personality, who and how I interact with others, how I lead, my career aspirations and how I have integrated caregiving throughout my adult life.
I’ve “sat in the seat” multiple times and have a deep appreciation for the commitment and courage it takes to provide care to a loved one. And I also recognize the choice and resulting wide-reaching sacrifice that occurs in serving as an advocate and navigating the daily demands of a loved one who is sick.
The National Center for Caregiving created a Caregiver’s Bill of Rights. I like what they created (although I think it’s a bit sterile). I’ve added a bit of perspective and am calling it the Caregiver’s Credo.
I’d love to know what you might add.
The Caregiver’s Credo
I have the right…
1. To take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my loved one.
It’s the easiest to agree with, the hardest to execute. We’ve all heard the airplane oxygen mask example. The key is to know your triggers and recognize this is a serious issue. You get sick, you can’t be there for your loved one. You put all of your energy into your loved one, you’ll suffer emotionally and physically.
I always knew it was time for a break when I started getting irritable. I’ve posted about this before. We’re human, it happens. When you’re focused on trying to think of ‘everything’, maneuvering the roller coaster of emotions, and navigating our broken healthcare system, your creativity and resourcefulness take a dive.
“Respite” can mean many things. I found relief by picking one thing I could do daily and I made it happen (and that one thing might be an extra minute in the shower). And if it was one of those 12-hour scan days in the hospital, then I chose to get relief by closing my eyes and listening to a favorite song during the “hurry up and wait” routine in the oncologist waiting room. Was it ideal? No. Yet it was one thing I could choose to do that day for me and the benefits were far-reaching. It helped me feel better and in turn, be a better advocate when Jeff was not capable of taking the lead.
2. To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
Jeff never objected about our getting help. I have friends whose life partners only wanted care from them which put a heavier burden on them. It was me who was hesitant to ask for help. How we figured it out was by talking it through. A self-proclaimed “jill of all trades”, I figured I could make it all happen. I realized early on (first diagnosis) how unrealistic it was. And so I started asking the questions: What really needs to get done? How do I want to spend my time? How do I want to spend the time I have left with Jeff? It wasn’t cleaning the house. We took the time to find out what we both wanted and needed, felt comfortable with, and nervous about – and we decided what worked for us. It wasn’t just about recognizing the limits of my own endurance and strength – it was recognizing what was important to both of us, what needed to be there, and how he wanted to be treated (Platinum Rule!).
3. To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
I maintained my career as best as I could. I reached the VP level role I once thought was important to me. I transitioned from full-time to part-time and adjusted when the treatment schedule demanded more time. Together, we decided it was time for me to pursue my graduate degree, a bucket list item I had been tossing around for a few years. Jeff was determined; he was hell-bent on seeing me graduate (I graduate December 2017). I was focused on retaining a portion of my life separate from providing care. I also knew that my personality (and mood) would benefit us both if I focused on something future-oriented, in spite of knowing it would be a future without him.
I’m not suggesting that every caregiver makes a significant commitment. Quite frankly, it’s been a doozy of a challenge with everything going on. I do believe having something that is future-oriented is important – whether it’s a club you love, connecting with friends regularly, enjoying a hobby. And I get the conundrum – caregivers are burning both ends. Finding something small that focuses on the future makes a big difference on our state of mind.
For loved ones who have a terminal disease, this is a hard step to take. Should you instead stay home? Should you be by their side because you know there will be a day when they are gone?
Here’s something to talk about with your loved one…they may need their own solo time. Jeff did. He needed time to process that he was dying. He needed time to lose himself in an episode of BlueBloods. He found comfort and was proud knowing I was pushing myself to get out of the house, to have a life that didn’t revolve around caregiving – and him.
He wanted to know that I would be OK when he wasn’t here. And it was my job to help him see that I would be OK.
Sitting in the seat, I am grateful we talked about investing in my future and for creating it, despite the uncomfortableness. It never took away from the love we shared. It gave us breathing space to process what was coming.
4. To get angry, be depressed, and express other difficult feelings occasionally.
Truth. It’s your right to get mad and be sad. Cancer is a horrible disease. You don’t have to be positive all the time just because it may make others feel more comfortable. It’s also your loved ones right to feel the same way.
5. To reject any attempt by my friends and relatives (either conscious or unconscious) to manipulate me through guilt, anger, or depression.
To quote Brene Brown: “If you aren’t in the arena getting your ass kicked, I’m not interested in your feedback.” No one understands the care you are providing for each other unless they are taking on 100% of that care themselves.
6. To receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.
How you and your loved one manage care is up to you. What Jeff and I learned over the years is that it requires a joint commitment to communicating from a place of love and respect. Sometimes we were spot on; other times we missed by a mile. Sometimes a solo walk was in order before trying again.
Yet, we kept trying.
Emotions run high throughout cancer caregiving – there’s so much unknown, most laced with fear. There’s no road map for managing it with ease. It’s stressful and disagreements happen.
Two days before Jeff died, he was moved to hospice house. He called early morning and asked that I please bring Gatorade. He said he needed it really badly and no one had any Gatorade. When I asked him how he was doing, he said: “I’m dying”. I called the nurses station and let them know I’d be there as soon as possible. They said he was frustrated and they asked whether this was how he typically responded (translation – is he usually demanding?) No, he isn’t.
Jeff couldn’t control that he was dying. And he let his frustration known. But Gatorade, well, he could try to control that. I arrived with 5 bottles of Gatorade. He already had 2 on his bedside table. The chef went to the store specifically to get it for him. Despite his having difficulty with pain and breathing, he made a point to express thanks to the chef and love and appreciation to me for bringing the Gatorade. We all have our “Gatorade” moments. It’s how we recover from them that matters.
7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
It always takes courage and bravery to provide care to a loved one. It’s a choice we make to serve the needs of another human being. It’s a remarkable gift we give. It’s also one of the most difficult challenges we face. For life partners advocating for their terminally-ill loved ones, my wish for you is an endless supply of strength, compassion, a healthy body and mind, and grace.
8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
9. To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
I agree 100%. I also support efforts underway to provide all caregivers with tools to help strengthen advocacy, communication, and more informed decision making in addition to minimizing the financial and emotional strain. I’m passionate about:
- How can we design company policies to acknowledge and support caregiving responsibilities?
- How are we setting expectations from the start on what it means to be a caregiving advocate? A proactive and confident caregiver?
Here’s what we know:
43.5 million Americans provided unpaid care to an adult in the last year. 25% of caregivers fall in the 18-35 category. In the majority of cases, they are providing care to a parent or parent-in-law.
- 50% of caregivers change their work schedules to provide care.
- 41% worked fewer hours than they would have ordinarily wanted to.
- Nearly 30% took a leave to care for an elder and 11% quit their jobs.
- And 50% of those who quit said their employers weren’t flexible enough to allow them to work and provide care.
And #10. To advocate for me as a distinct identity and not the primary caregiver.
When caring for a spouse, an assumption is unfortunately made at the doctor office, hospital and medical clinic. You become the person that will take care of things. And while the reality may be that at home, you take on many of these responsibilities, that doesn’t mean you don’t need help. What you don’t want is the medical team making an assumption that care is unnecessary simply because of your presence.
It happened to us in the hospital (several times) when the checklist of pre-surgery questions outlining what support is needed at home was skipped over. Instead of having a conversation about what might be needed, the medical team made a verbal assumption that because I was there, I would provide all of the support. Whoa.
On average, caregivers spend 24.4 hours a week providing care to their loved one. Nearly one-quarter provide 41 or more hours of care a week (23%). Caregiving is particularly time-intensive for those caring for a spouse/partner (44.6 hours a week).
That was the day I realized I was seen as the “wife that would do it”.
I stopped that conversation and let them know that just because I was Jeff’s wife didn’t mean I would be taking on all care responsibilities. We asked them to back it up and spend a few minutes advising us of what we could expect. We were advocating that day (Check out: 5 ways to be an active advocate).
- Read: The Caregiving Cliff – Washington Post
- 2015 Caregiving In the US – National Alliance for Caregiving
About Secondhand Cancer
Secondhand Cancer was created to equip cancer caregivers and their loved ones with real-life perspective, practical tools, and resources so that we can all better cope with the daily demands of living in a house where cancer exists.
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