I was recently thrust into the role of caregiver for my husband. It has been a life-altering experience -- for the whole family. Here are some things people have said to me -- that I wish they wouldn't say again.
1. "I don't know how you do it."
News flash: neither does the caregiver. Caregivers only appear to have supernatural powers of strength and calm. No matter how many times you tell them that you admire them for holding their shit together, they will look at you like you are crazy. Caregiving is hard work. It is not for the faint-of-heart or those who don't effectively question and demand things. Caregiving puts you in touch with your inner bitch very quickly because every day they will encounter at least a few people who don't do their jobs very well.
My husband was just discharged after nearly a month of hospitalization. It's been three days and I have yet to see the promised visiting nurse, although she does call a lot -- mostly to verify the directions to my house. When I asked this morning if she would help my husband bathe since he has a dialysis port inserted in his chest and is wearing an electrical heart monitor that I presume shouldn't be showered with, she said she would evaluate his need (to what? be clean?) when she (eventually) gets here. Once she determines that he needs a bath, she will put in an authorization order that has to be approved by her supervisor and then the insurance company. Now take this process and repeat it again for physical therapy, occupational therapy, nutritional support, diabetes management training, and kidney failure support classes.
So when you tell a caregiver that you don't know how they are managing all of this, the truthful reply is: "With the realization that I have no other choice."
2. "G-d only gives you what He knows you can handle."
No, no She doesn't. To be honest, not every caregiver shares your belief in the power of prayer. I happen to believe in prayer personally, but this line still makes my skin bristle. My husband's kidneys did not fail because G-d thought I was strong enough to handle it and it might be fun to watch how I do. My husband's kidneys failed because he's lived as a diabetic in denial for years. For fun, maybe G-d could make Hershey bars and Coca-Colas disappear from the planet. That's pretty much what I'm praying for these days.
3. "I'm glad you are able to get him the best care possible."
The "best care possible" these days is a crapshoot. The health-care industry has an extremely high turnover, especially when you hit the nursing home level. The National Institutes of Health reports that the staff turnover in nursing homes often exceeds 100 percent. Yes, you read that right. A complete staff turnover, more than once a year. People come and go. More than a few probably should never have been hired in the first place. Some leave on their own and others are fired for mishandling patients. There is absolutely no peace of mind that comes from putting your loved one in a facility that you can't trust. You can review and compare nursing homes here, but be forewarned: Nothing quite prepares you for visiting them -- and visit them you must.
4. "He's in good hands."
This is generally said by healthy people who haven't needed medical care in a good long while. Things have changed a lot in terms of health care delivery in recent years, and probably not for the better. No, this isn't about Obamacare; it's about how what kind of insurance you have pretty much determines what quality care you will get.
There is now a new breed of doctor called a hospitalist who works for the hospital and will "manage" a patient's care and decide when it is necessary to bring in specialists or run tests.
As NPR reported, hospitalists first appeared on the medical scene in the 1990s with the idea that since they would be at the hospital all the time and familiar with the way the place works, they'd get patients taken care of more quickly and efficiently. By "efficiently," they of course meant "cheaply."
It hasn't worked out that way. Researchers from the University of Texas Medical Branch in Galveston compared what happened after discharge to patients cared for by hospitalists versus patients who were cared for by their regular primary care doctors.
What they found was that while the hospitalists' patients indeed had shorter hospital stays, they were more likely to be readmitted to the hospital within 30 days, or to visit an emergency room within that first month. They also found hospitalists were more likely to discharge patients to nursing homes or rehabilitation facilities, and less likely to send them straight home than the patients' regular doctors. Bottom line: The decreased length of stay and lower hospital costs associated with hospitalist care were easily offset by higher medical costs after discharge.
As for the patients? I can only speak for my own. The hospitalists seeing my husband during his initial hospitalization did little that I could see besides impede his access to specialists. A good hospitalist knows when to step aside and let the experts evaluate things. A not-so-good hospitalist operates like a little Napoleon. I had one who barged into the room doing an Al Haig "I'm in charge here" impression. I never cared much for Al and I cared less for this hospitalist.
5. "Let me help."
Yes, of course you may say this -- if you mean it. Most days have a straw-that-broke-the-camel's-back feel to them, but one thing that totally tips a caregiver over the edge are insincere promises from friends. It's great if you want to drop off dinner. How thoughtful of you to call from the market to see if the caregiver needs anything. But you are adding stress to her day when you want her to drive out of her way to pick it up from you. Go the extra mile and don't make meal delivery another problem for a caregiver to solve.
6. "Do you have a minute for a fast call?"
Let me answer this one on behalf of every caregiver on Earth: "No, I don't have a minute to spend with you on the phone delivering a play-by-play of every miserable hour of my or my patient's day." You can follow along when I post the highlights on caringbridge.com or Facebook. Ask me, and I'll even put you in one of my texting groups. Just don't ask me to talk on the phone and repeat for you what I've already posted or texted a million times. I'd much rather spend that spare minute in the shower.
7. "My uncle had that ...."
Not all cancers, not all heart attacks, and not all kidney failures are the same. Not all people respond to treatment the same or react to learning they have a chronic disease with the same joie de vivre. Maybe your uncle indeed had acute kidney failure, but so what? Do you really want to lay it on me that he's managing just great now with a home dialysis machine that heaves in and out all night? Or that his out-patient dialysis that ties up three full days a week "doesn't slow him up a bit?" We are all different. Allow me that. In time, we will get used to our new normal, but for now, we need some space to acclimate without expectations that I'm not sure we will ever meet.
8. "I know my problems seem small compared to yours."
Self-awareness is a wondrous thing. But honestly, I'd love to hear someone else's problems for a change. Listening to a co-worker describe how her best friend -- a new mom -- is struggling to function without enough sleep and adequate support was like music to my ears. I was even able to suggest some worthwhile ideas, like hire her a cleaning person to come in once a week. Having this conversation was tantamount to taking a mini-vacation from the pressures of caring for my husband.
Everyone has problems, and one of the first thing a caregiver realizes is that some are even worse than theirs. It's OK to share the frustrations you are having. It's even OK to share good news. Heaven knows we'd like to hear something positive once in a while too.