My husband was diagnosed with Stage IV cancer a few months ago. Last Friday, he had the last of his 35 radiation treatments. Two days ago, he had the last of 6 chemotherapy treatments.
A few moments ago, I Googled “caregiver syndrome.” I wasn’t sure whether or not that actually existed, but I figured I was suffering from it if it did. It does, and I am. According to CNN, the symptoms are depression, anxiety, anger, and declining health. Let’s throw in exhaustion and fear while we’re at it. While this condition is also referred to caregiver burnout, it didn’t take me any time at all to get burned out. Except for the exhaustion, it was all there for me as soon as I heard the word “cancer” and my husband’s name in the same breath. Within just a few weeks of starting to navigate the cancer maze, exhaustion did in fact set in, and I haven’t had time to get over it yet. It will be three months before the next PET scan to see if the cancer is really gone. I don’t think my depression, anxiety, and anger are going to magically disappear in the next day or two.
As for my own declining health, I have been suffering greatly from A Knot in the Pit of My Stomach. I don’t think that’s an actual medical condition, but it’s been real to me, accompanied by chronic diarrhea, and by chronic I mean a dozen times a day, with intermittent bouts of nausea when Fear Takes Over. I diagnosed myself with Irritable Bowel Syndrome, although I tried to jokingly think of it as Scared Shitless Syndrome. There’s nothing like hearing that the love of your life is seriously ill and knowing that he might die.
Yes, it made me depressed, anxious, and angry. I am not the crying type. I have gone years at a time without crying over anything, but in the past few months, I’ve probably shed more tears than I have in the rest of my life all put together. I’ve been angry…angry that Champ had cancer, and angry at the insurance company for jacking us around, and angry that people who are already under stress have to have the added stress of dealing with them.
I’ve been paranoid that he wouldn’t get well. I’ve been paranoid that we wouldn’t have enough money to survive the experience. I’ve been paranoid at little things. For instance, naps. For our whole life together, my husband would often come home from work, sit down in his recliner, and take a nap. It was just his habit. But after he was diagnosed, if I came home and he was taking a nap, in my head I would be going “Oh my god, he’s taking a nap! Is he sick? Is he okay? Is he breathing?” I know it’s ridiculous, but I couldn’t help it.
And in the meantime, the world kept turning. Work had to be done. Business had to go on. Deadlines had to be met. Bills had to be paid. Appointments had to be kept. All together, Champ has had a total of 7 doctors involved in his treatment, which was complicated by his life-long condition of having extremely low platelets. Since his initial diagnosis, he has had a total of 75 doctor visits, and I have accompanied him to all of them except two radiations and one platelet transfusion.
I’ve always believed that helping someone else is a good way to get your mind off your own troubles. I started a Cancer Caregiver support group, for the also-selfish reason of having others who were going through what I was going through to talk to. I also got some anti-anxiety medication, but after reading all the side effects, decided not to take it. We’ve gotten a lot of comfort and support from friends and family, and from FB friends. One friend, who is a long-time cancer survivor herself, called Champ one day and said “I just wanted to call and say this is not all about you. Your wife is going through a lot, too, and you need to understand that. ”
Caregiver syndrome is common among those who are caring for their elderly parents or other family members with dementia and chronic diseases. It’s very easy for other people to say “You have to take care of yourself. You have to make time for yourself.” That’s all true, but there were weeks when that was a joke, and I know the other caregivers out there know exactly what I mean. Since my husband’s medication was causing him to nap all day, he didn’t sleep at night. He kept me awake at night, and I would be exhausted during the day when I was trying to work. I would literally be ready to go to bed at 7 pm because I was just so tired. On the few occasions when I could squeeze in a massage, I just passed out cold on the table. Playing music is my stress relief, and I had some months of not being able to do that due to nerve damage in my hand. That was depressing to me on top of everything else, and I just wanted to stay in bed and cover up my head, or drink myself into oblivion.
When the sick person has to stop working, their disability insurance may not be any where near the amount of money they were used to making, and while insurance may be covering the sick person’s care, there are still deductibles, out of pocket expenses, over-the-counter drugs, various things that insurance will refuse to pay for that you end up having to pay yourself, special foods and/or supplements, travel to and from doctor’s appointments, and the like that can be overwhelming. You may think you’re saving for retirement, but if your retirement plan doesn’t contain built-in accommodations for a sick family member that you may have to act as the caregiver for, you can be prepared to see a lot of money circling down the drain. Being a caregiver is not a disability, and neither your own insurance nor unemployment insurance is going to be there to help you. Caregivers frequently either have to miss a lot of work, or give up their jobs altogether, in order to provide care. If you’re self-employed, like I am, and you actively work in your business, you may have to pay someone to take your place, like I have.
So yes, as a caregiver, you do have to take care of yourself, and that’s hard to do when your focus is on taking care of someone else.
I personally found out that what I needed more than anything was just help with every day things, and I think that’s probably true for everyone. A caregiver will appreciate someone cleaning their house, or doing their laundry, running errands for them, or bringing them a home-cooked meal. Some caregivers might appreciate having someone give their patient a ride to doctor’s appointments. Although people offered to do that, I personally did not want that because I wanted to be there for all of my husband’s appointments. Unless the caregivers you know are independently wealthy, gifts of money, prepaid credit cards, or gift cards to gas stations, local grocery stores, restaurants, or stores are always welcomed. A gift certificate for a massage, or a night away in a hotel–even a local one–is a good gift. Volunteering to stay with the sick person for a few hours, if they need constant attendance, is a good idea.
One complaint that I hear repeatedly from other caregivers is along the lines of “My sister/brother never helps with my mother.” If one of your siblings is caring for your parent(s) or another sibling, and you haven’t been physically participating in that, then you need to do something else to help, instead of leaving it all on your siblings to deal with. Help them financially, or get off your butt and go spend the weekend doing what they do all the time, or pay for a home health care service to do it, so they can have a break. If you haven’t personally been a caregiver, don’t say “I know how it is.” No, you don’t. You don’t have any idea.
I have been very fortunate that my husband has maintained such a beautiful attitude during this entire ordeal. He took it all like the Champ he is. He has always appreciated me and always shown that, and this experience brought us even closer together. It was just six months ago that he was acting as the caretaker for me, when I was very sick with double pneumonia, a UTI that went systemic, and a gall bladder that needed emergency removal. That’s what we do, we take care of each other.
I expect that I am going to continue to have anxiety until his PET scan comes out clear. And the doctors have said he’ll continue to be regularly checked for the next five years. My depression is situational, and I hope to feel better myself as I see him feeling better and better. I’ll probably remain angry at the insurance company, and have to continue spending my time dealing with them. Based on some of what I’ve had to go through with them, I feel sorry for sick people who don’t have a witch like me in their corner to advocate for them. Our almost-daily doctor appointments are over now, so hopefully I will start feeling less exhausted.
I appreciate all the support, encouragement, cards and letters, gifts, and prayers and well-wishes that we’ve received. It has meant a lot to both of us, and were it not for that support, my caregiver syndrome would probably be a lot worse than it has been. Thank you all. And please, do whatever you can to help the people in your lives who are caregivers, and if you are the caregiver, don’t be afraid to say “I need help.”