7 Things I Wish Someone Told Me About Being a Caregiver While Chronically Ill

This past spring, my normally-healthy mother fell ill and was diagnosed with pancreatic cancer. I, who have had juvenile rheumatoid arthritis since age 8 (along with a host of related conditions), really wanted and needed to care for this woman who had spent much of her life caring for me, and whom I loved so much. I did stay with her and provide her with the care I could until she passed away in late May. While I will never regret having tended to her as she was dying, it was one of the hardest things I’ve done in my life (and that’s saying something). Here are a few things I wish someone had told me as I embarked upon life as a caregiver while I myself was ill.

• The Mighty’s Caregiving Toolkit

1. Be realistic about what you’ll be able to do — not just with family members and the person you’re caring for, but also (and especially) with yourself. Don’t let adrenaline, which often comes with bad news (like the diagnosis of terminal illness in a loved one), fool you into thinking you’re feeling better than you really are.

My mother, who was very independent, lived several states away from me and from my younger brother, my only sibling. When Mom first became ill, my brother was able to get some days off work and flew out to be with her. I was in a bad chronic fatigue “crash,” barely able to sit upright for an hour. But the news of her diagnosis — the shock, the desperate desire to spend whatever time I could with her — spurred a huge adrenaline surge in me, such that I not only planned to go out to see her, but I assured my brother, my mom, and my husband that I would be able to care for her, drive her the 30-minute-one-way trip to get her chemo treatments, and do all else that was necessary. Given how ill I’d been just a few days before making these assurances, I should have taken a step back to realize that I couldn’t promise all of that.

2. If you can, research ahead of time what resources will be available to you and your family member or friend. If that seems too overwhelming, try to enlist another family member or a good friend to look into possibilities.

If your loved one is a member of a church or other house of worship, that can be a great place to find willing volunteers to sit with your loved one while you get a few hours of rest, but keep in mind that, if your loved one requires a lot of assistance or administering of medications, you’ll probably need access to in-home nursing services.

It may be difficult to do this fully, as we often can’t predict what our loved one’s changing condition will require. But it would have helped me to know ahead of time that my mom’s very rural location meant that full-time in-home care wasn’t an option. I was glad and grateful for my mom’s many generous church friends, and initially, having one or two of them come for an hour each day to sit with Mom while I tried to rest was very helpful. But after a few days, I realized I wasn’t really getting rest while the friends were with Mom, because the phone kept ringing (pharmacies, doctor’s offices, etc.), and often those were phone calls I felt I needed to take. And as Mom’s
condition worsened and she needed help just transferring from wheelchair to bed, or taking medications, it was clear that untrained friends coming a few hours a day wasn’t enough.

I wore myself out both caring for Mom and making many phone calls trying to set up in-home nursing. In retrospect, it would’ve been a good idea to ask my brother, or a friend of Mom’s or mine, to help with the phone-calling. I also wish I’d thought to look into in-home nursing options ahead of time, to give me a fuller picture of what support I would and wouldn’t have.

3. Be honest with your loved one’s medical team — doctors, nurses, social worker, hospice workers (if applicable) — about your own health condition and your limitations.

This may not always help; I tried telling everyone from my mom’s primary care doctor to, when the time came, the hospice staff, about my own health condition and limitations. In some cases, the clinicians still assumed I was the full-time caregiver, I think because they couldn’t see any other option for my mom getting what she needed. I wish I’d been more firm in telling them that I couldn’t help Mom transfer in and out of a wheelchair, or get up in the night to administer her medications, and that they had to help me find other options. In some situations, especially if your loved one is near to a metropolitan area, there may be options that these clinicians can recommend to you.

4. Try to have your own support team — a spouse or close friends are especially good — to whom you can talk to, text, etc., to vent your stress and rocky emotions.

Being a thousand miles away from my husband during the six weeks I was caring for Mom was really hard, but I emailed or texted him regularly (and video-chatted on weekends), and I did the same with a couple of very close friends who know and understand my illness and limitations. Being able to vent to them, to tell them what I couldn’t tell anyone around me, was essential in helping me survive that time. If you don’t have a partner or friends who can support you this way, you might reach out to a social worker or even see about video sessions with a counselor so that you have some outlet for all you’re going through emotionally. Because you will go through a lot: even without a chronic illness, a caregiver is full of conflicting and often-painful emotions as she sees a loved one suffering.

5. Forgive yourself for what you can’t do, and if you find you’ve bitten off more than you can chew, don’t be afraid to admit it.

When I’d exhausted myself trying to find in-home care for my dying mom and could barely drag myself out of bed to give her her medications, I had to make an emergency call to my sister-in-law and my mom’s pastor to help me find nearby nursing-home care for my mom. Telling my mom I needed to move her out of her beautiful home (even though we’d talked about that probability ahead of time) felt like I was putting a knife into her heart. But I knew it wasn’t possible, or safe, for me to keep trying to manage the care myself. Looking back on that time, I realize I did the only thing I could do, and I try to be compassionate with myself for making that decision.

6. Don’t be a martyr and sacrifice yourself for the sake of looking like the “long-suffering-but-dedicated” caregiver. You’ll only build up resentment towards your loved one, at a time when, ideally, you and s/he could have final, meaningful time together.

I didn’t ever feel like a martyr, mainly because I’d always had such a close and loving relationship with my mom, and because she understood my limitations. But I think if I’d been caring for someone with whom I had a fraught relationship, or someone who was very demanding, pushing myself to take care of them would’ve led only to further tension and a feeling that I was making too big a sacrifice. As it was, there were times with my mom when I was so used-up that I became irritable and felt put-upon. In those times, I needed to step away (if possible) and remind myself that I couldn’t do everything; I was there to show my love for my mom, not push myself into the ground for her.

I realize that many people reading this will be in situations less conducive to self-care even than I was. You may be the only living family member to care for a parent with whom you never got along. Or you may need to care for a loved one in your home, even though that is too much a strain on you, because a nursing home isn’t a financial option. Or your loved one may not have had his or her own good support system (church, friends, etc.) upon whom you can rely for some respite. If you are in such a situation, I’d recommend asking yourself these things: Is this something I really want and need to do for my own sense of peace? If not, what would happen to the person I’m caring for if I weren’t around? Usually there is some option, even if not ideal, for people who have no caregivers. Maybe that option would be better for both you and the person who needs care.

This brings me to my final piece of advice:

7. You will probably feel guilt and regret, no matter what the situation. Be gentle with yourself and remind yourself that you did the best you could, even if “the best” meant admitting that you could no longer be your loved one’s caregiver.

Regret can easily sting me when I think of my care for my mom: the times when I was irritable and short-tempered or the times when I was too exhausted to do the simple things that helped ease her pain, like combing her hair or massaging her feet. And I’ll always wish I could have kept her in her home until the very end. But I try to balance these thoughts with happier memories, like when she asked me to model some of the jewelry and scarves she was going to leave to me, or the joy on her face when my brother and I were able to bring her beloved cats to visit her in the nursing home. I did do the best I could. Loving her was more important than any care I could give her, and Mom knew I loved her.