It Sucks When You’re a Have Not

money-in-medicine-bottles-300x199Last week, I listened to an caregiving expert speak about the caregiving experience. She spoke about celebrities who share their caregiving stories and how, in essence, they are just like you. It doesn’t matter how much money you have, she said, the roller coaster ride of emotions affects everyone.

When I first heard this, I thought, “This really isn’t sitting right with me.” I continued to think about this and then I had  a chance to listen to her comments again just to make sure I heard them right.

I heard her comments correctly. Caregiving is the great equalizer, she said. It doesn’t matter how much money you have.

I do agree that money doesn’t protect you from tragedy or grief or sadness or guilt.

But, money sure does help during those times when a family member needs care. Imagine being able to hire the best care, no pinching pennies required. Imagine being able to fire poor care as soon as you see it. Imagine being able to call on the best doctors and specialists simply because when you call, your call is answered. Imagine just buying what you need when you need it. Imagine being able to hire help for yourself–to run your errands, schedule your day, follow up on phone calls–so that you can spend uninterrupted time with (and away from) your caree.

Imagine.

That feels good, doesn’t it?

Here’s the reality check.

When you worry about money, you live in hell. The stress is so incredible that it amplifies your grief, sadness and guilt. When you worry about the costs of medications, when you struggle to afford care (and, heck, if it’s good care, that’s just a bonus), when you pray every minute that the checks don’t bounce, you live in a dark cloud. It doesn’t just follow you, it envelops you. (A good example is @gwyn, who received $500 through our CareGifters program in April. You can listen to Gwyn share her worries about money here.)

And, it’s not short-term, this hell created by a lack of money. When you don’t have money, you take on debt. Paying back credit card debt takes years. Climbing out of a hole created because of bankruptcy eats up a decade. Lack of money impacts today, tomorrow, the future.

Consider family caregivers who leave the workforce or who cut back on their hours in order to provide care. According to MetLife Mature Market Institute, those who care for parents lose an estimated three trillion dollars in wages, pension and Social Security benefits when they take time off to do so.

Think about how much longer you will work if you took time off for caregiving or if you took on debt during caregiving.

When a tragedy happens, I’d much rather have money. Because the great inequity during caregiving is money. When you have money, you have options and choices and a future not afforded to those who don’t. And, if you don’t have a lot but you don’t have a little, you’re stuck without much.

What do you think? Please share your thoughts in our comments section, below.

Profile photo of Denise

About Denise

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

9 thoughts on “It Sucks When You’re a Have Not

  1. Profile photo of ChrisChris

    I think the comment of ‘it doesn’t matter how much money you have’ is crap. Sorry, but it does matter. Right now we’re living on my income alone and am grateful for my extended medical insurance because I don’t know how we would pay for all the medication + supplies. What I wouldn’t give to have a private rehab therapist that could come to our house and work with Mike to give him a better quality of life, or full time housekeeper and personal chef. What about being able to take time off work to be able to help him when he’s having a really bad day, week or month without having to think well there goes the mortgage payment?

    I realize the theory of money doesn’t buy happiness does ring true, it does buy a piece of mind when you need it the most.

    Reply
  2. Profile photo of CasandraCasandra

    OMG! This hit home for me so much right now. I was blessed to be given assistance through the CareGifters program when I needed it most. After weeks of spending time in the hospital with my husband and literally bringing home a $46 paycheck when normally I made upwards $1000 per pay check. I was devastated. It helped so much ease that worry.

    Yet, last night I had a full-blown panic attack to which my husband spent hours consoling me because we don’t have any savings again after this move. A move we made for his health but his MDs won’t see him until his COBRA kicks in and that check to pay for his COBRA won’t be able to be sent for another TWO WEEKS! And I am looking at him and seeing how dark his eyes look and noticing a bulge on his forehead which is what I had noticed when all of this first started and thinking, WHAT HAPPENS IF WE HAVE AN EMERGENCY? I know the insurance will be back dated but that puts us at the mercy of the emergency room and not the MD we moved here to be treated by. Everyone sees my husband’s MRI/CT scans and freaks and immediately jumps to let’s operate. How will we convince them what is truly needed?

    Then we are also sitting here with food and a roof over our heads, thankfully, but with no money in case he needs extra meds. He does need certain other things that I am telling him we are going to have to go without.

    And then there is me. I am sinking every last dime into my husband’s care but I need to see a dentist, I need to go to the doctor, and I’ve got meds I haven’t been taking but once a week trying to stretch something I need to be taking everyday and suffering in the process.

    Yes, money doesn’t solve the fact that your caree is sick or the emotions you have behind that sickness BUT it solves enough so that you don’t have the worry and fear and panic of not being able to provide for your caree and yourself on top of dealing with their illness.

    Reply
  3. Profile photo of TrishTrish

    Denise, You hit the nail on the head. When Richard could no longer work due to his back pain, he stopped working. We had debt we incurred (stupidly, I agree, but counted on a future with two incomes!) We filed for BK and I am not proud of that fact.

    Now I am caring for Robert and feeling drained because of also working full-time at a stressful job and trying to make money on the side with freelancing to have extra money. I make good money so can’t complain but I do wish I was in a position to not have to work FT at such a stressful job. However, I stay so I can pay off debt and save for weddings for our daughters and our retirement. I am definitely more fortunate than some but do not by any means have the same resources as the Kennedys have when they go through their caregiving experiences.

    Plus, as was quite evident last week, we rely on Robert’s government assistance for his medical coverage. I wish that weren’t true but we cannot pay for all of his meds, supplies, neuro appointments, hospitalizations without that coverage. It was extremely stressful to think we might be without it.

    So, while I agree that caregiving has us all going through the same emotions we do not all have the same financial situations which can make a huge difference in stress and worry levels.

    Reply
  4. Profile photo of RichardRichard

    Denise, I do agree when it comes to the pain, anguish, hurt we are all the same and feel all of it. When it comes down to medical care, aides, treatments, best doctors, those with status (ie: $$) that have better access to those who can provide some of the best medical aid available. Imagine Mr Obama walking into a Kaiser for medical treatment, wouldn’t happen.

    Reply
  5. Profile photo of darciejanedarciejane

    Caregiving the great equalizer? I DON’T THINK SO. Just the opposite is true. It’s just another thing that separates the haves from the have-nots.

    Those who don’t go to bed every night of their lives worrying about money, cannot possibly understand what that does to a person. To equate their situation with what the rest of us have on our plates is nothing short of insulting and insensitive.

    Reply
  6. Profile photo of PegiPegi

    Think you hit everyone’s nerve with this one, Denise. We all have our stories. Some of us started as your basic middle class, hardworking folk. Then crisis hit. Hubbby was no longer able to work. We had to sell our home that we planned on staying in forever; it was nothing fancy. But we loved it, we bought with two incomes. Hubby worked 10-12 hour days, I, two jobs to make it happen. We have accrued so much cc debt with meds, insurance payments et.al. With the new “Health Care Reform” I am seeing outrageous increases in his medicare managed care plan. $125.00 per day for the first six days of a hospital stay for instance on SS. The only ones who could afford a co pay like that is one of those unfortunate rich folks. A statement like that is nothing less than degrading and patronizing. I can’t even comprehend the emotions be the same. They have every resource that money can buy; big stress reducer. You also hit it on target about being in the middle, we used to be and that got us even less. This has been one of my personal pet peeves for awhile.

    Reply
  7. Teresa Thompson

    Several times over the past decade we’ve abruptly had our income cut in half. Each time I don’t know how we will make it, but somehow we survive. It is one thing a lot of caregivers deal with, I’m sure.

    The food in our cupboards gets pretty scanty at the end of the month. My husband asked me last night if we had any cookies and I suggested saltine crackers with some jam. We eat leftover leftovers many a night. No food goes to waste around here!

    I guess you could say we fall into the “have not” category too. :)

    Reply
  8. Profile photo of G-JG-J

    I’m happy to see you address this issue and know that it isn’t just me who feels this way. Shortly after becoming a caregiver, I read an article about a couple, both of whom are actors living in NYC. Her mother was diagnosed with Alzheimer’s, I think. The article was all about what wonderful caregivers these two people were and how difficult it was for them. Emotionally? Probably, but not in any other way. They purchased the apartment across the hall from theirs for her mother, and hired 24-hour live in housekeepers. Maybe writing the check was hard, but the rest of it doesn’t sound like it!

    I feel frustrated when people’s answer is to “hire it done” without saying who is going to pay the bill. It annoys me when I sit in a support group and the social worker’s suggestion is to “hire” help, or enroll the spouse in a $95 per day program. She doesn’t know people’s financial situations and maybe they can’t afford to do what she is suggesting.

    I try not to look at our future and wonder if there will be a time I’m trying to pay for my son’s college and some level of caregiving for my husband. I feel badly that my son has to say, “If I get accepted to College X, can we afford for me to go there?”

    Reply
  9. Rachelle Norman

    Of course, no amount of money can save anyone from dementia or death, but money definitely does matter! I visit lots of different senior living communities as a music therapist, and it breaks my heart to see the differences between some of the high-priced facilities and the low-priced ones. Everything you said about being a “have” vs. a “have not” is totally true.

    Reply

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