Taking care of anyone is physically and mentally draining. When it comes to family there is an added emotional component. I don’t just mean the "It’s hard to watch someone I love hurt" component. I mean the "My mother still calls me Tootsmagee and scrapes her teeth on her fork" component.
Let’s just say that taking care of a loved one is complicated on every level.
If you’ve ever been the primary caretaker of a family member, through illness or injury or end of life, then you’ll understand these things.
1. You’re not doing it because you love it.
You’re doing it because you love the person you are caring for, not because you love the job of taking care of them.
2. There are days you resent the hell out of the job.
You just do. You resent the task at hand. You resent the fact that everything else in your life is on hold. And you resent the illness which got you here. That doesn’t diminish your love or your empathy for the person you are caring for.
3. Depression is an equal opportunity oppressor.
Your loved one gets sick and then depressed. Or was it depressed and then sick? It gets to the point you can’t tell where one ends and the other begins. Then you’re fighting a battle on two fronts, emotional and physical. And, of course, you may very well be battling your own depression – whether you’re aware of it or not.
4. Solutions rarely occur with one phone call.
Multiple calls to Medicare. Multiple visits to the doctor. Multiple desperate late night searches online. If the government gave an award for persistence, you’d hound them until they awarded it to you.
5. You’re the hub of information.
The cardiologist isn’t aware of what the neurologist is doing until you inform her. The orthopedist forgot to tell the physical therapist to avoid a certain exercise, so you must intervene. The psychiatrist doesn’t communicate with the pain doctor until you forward their emails to one another.
Sometimes it feels like you’re the expert educating healthcare professionals.
6. You become a late night online detective.
Your mom has a bizarre new symptom. The doctor has ordered new tests. You can’t fall back to sleep after helping your mom at midnight. By 3 a.m. you’ve discovered two of her medications don’t interact well, another drug has a side effect that you thought was a symptom of her illness, and daddy longlegs aren’t actually spiders.
7. Family members who aren’t primary caretakers have lots of ideas for you.
Your sister in Seattle has lots of advice about what you should be feeding your mom. Your brother-in-law in Palm Springs is concerned your husband isn’t getting out enough. Your kids think you should take a vacation to Disneyland. No one has offered to implement these suggestions, they just enjoy sharing their opinion.
8. You need friends who get it.
I asked for advice about caregiving on my personal Facebook page and dozens of people responded. Then those people started responding to each other – agreeing on points and empathizing. I discovered I know a lot of people who have taken care of loved ones. I bet you do, too.
So many people understand what you are experiencing because they’ve gone through it themselves. If you don’t talk to someone who "gets it", you’ll start to believe you are all alone.
9. There are good days and bad days and days in between.
You appreciate the good days and accept they can’t last. On the bad days you hold on to the hope that tomorrow might be better.
10. Arguing with the patient is pointless.
When you are caring for someone with memory loss and confusion, you learn quickly that correcting them only makes matters worse.
When you are caring for an adult with specific opinions and wants, you learn slowly and painfully that you can’t force them to feel what you wish they would feel or do what you wish they would do.
11. Everyone handles family obligations differently.
Maybe you feel an obligation to take your dad into your home to care for him. Maybe your sister feels he should be in a nursing facility where she can visit twice a week. Maybe your other sister feels an obligation to come around at Thanksgiving.
To borrow from the section above, "… you learn slowly and painfully you can’t force them to feel what you wish they would feel or do what you wish they would do."
That quote is probably appropriate for every family interaction throughout our lives.
12. Having a plan before you need a plan saves a lot of heartache.
Knowing what your parents and grandparents want in regards to long-term care saves a lot of family infighting and stress. Having a plan to cover long-term care expenses is priceless.
13. You need a break and you need boundaries.
You need to get away sometimes. You need to talk about something else sometimes. You have to focus on your needs sometimes. You have to say "no" sometimes. And sometimes the guilt of that can be overwhelming.
When you feel guilty, you remind yourself of the alternative. The alternative is you burn out, your resentment for the work begins to look like resentment toward your loved one, or you get so overwhelmed you become ineffective.
You are human. Humans need to recuperate sometimes. That’s a fact, and you know what they say about facts: it’s pointless to feel guilty about them.
14. People ask how they can help you and that’s not really helpful.
You know they mean well but what you really wish is they’d just bring a hot meal or some groceries, or give a gift certificate to have the house cleaned, or come mow your lawn, or swing by with a latte.
You make so many decisions every day. It would be wonderful to have someone make a decision for you.
15. The squeaky wheel gets the grease.
As a caretaker you let go of your inhibitions pretty quickly. You learn to question doctors, hold accountable those who help you care for your loved one, and check-in frequently with nurses, aides and staff. Keep advocating. Keep fighting. Keep reminding people your loved one is more than a number on a chart.
16. You are beyond grateful to those who help you help the one you love.
You want to hug the home health aide who makes your mom laugh when she visits. You’re so thankful for the physical therapist who never gives up on your dad’s progress. You love the nurse who calls you with updates after the doctor visits your grandmother’s room. You want to cry when the doctor herself returns your phone call immediately. You don’t know what you’d do without the guidance of the social worker at your husband’s assisted living facility.
I still get teary-eyed thinking of the staff from the nursing home who came to my grandfather’s funeral.
In the midst of so much turmoil and heartache, there’s magic in the effort of people who care and who help.
17. You need to show as much compassion and patience for yourself as you do to the one you’re caring for.
You can’t do everything, but you can do a lot. You make mistakes, but you do many things right – not the least of which is to love someone enough that you’re willing to take care of them.
No one emerges from caretaking without regrets and doubts. Forgive yourself.
You do a lot. You do much more than your loved one ever wanted you to have to do.
That’s a fact. And you know what they say about facts.
Image: Jonas Boni