Caregiver Syndrome

Me: Why am I so tired?
Christine: Where would you like me to begin?

"Elderly caregivers are at a 63 percent higher risk of mortality than noncaregivers in the same age group"¹

"Researchers likened exhausted caregivers' stress hormone levels to those suffering from post traumatic stress disorder...caring for someone can lead to high blood pressure, diabetes and a compromised immune system."²

This will not be an entirely objective thing.

Ask any caregiver. They will tell you (and Wikipedia will confirm) that they feel a wide range of emotions from exhaustion, anger, rage, and guilt. The process of providing extended care to anyone with a chronic disease is wearing. I've been providing care for Christine for seven years, beginning with her mastectomy and running through countless rounds of chemotherapy, every scan known to medical science, not to mention gamma knife surgery and whole brain radiation. I watched as she struggled with a loss of proprioception, lost mental faculties and now, in the late stages of hospice care, her mental agility and communication.

It takes a toll, this caregiving. Carers are looking after loved ones with all sorts of ailments, from cancer throughAlzheimer's Disease, degenerative disease, Multiple Sclerosis. The list goes on, and so do the symptoms. Increasingly, people are choosing to have their last days at home, or families are forced through financial need, to care for family members at home. It's a tough job, someone has to do it, and there are many known effects, both psychological and physical.

Why am I so tired, again?

It started with tiredness. I was working at that time, coming home and preparing meals, running errands, cleaning house, doing laundry. Even in the early days, when Christine was able to return to work and there was little care, it started to affect me. Once we were in the full round of treatment following her diagnosis with metastatic cancer, the tiredness crept up. I began grieving, started to imagine myself at her memorial; we started to plan it. I became riddled with guilt because clearly, I had not done enough, could not do enough. My concentration span was so short I oft fell into the trap of leaving a trail of half-done things about the house. The mostly-emptied dishwasher, the half-swept floor, the laundry basket in the hallway. Memory? You name it, I misplaced it. Keys, wallet, spectacles, shopping list and that thing that someone just told me. All gone in an instant.

I would become angry, take it out on the medical system, insurance companies and occasionally on myself and my family. I didn't go to see the doctor because I felt I was malingering.

In addition, I caught every bug going, had a constant stream of colds (pun intended) and stomach ailments. I had erratic sleep, struggled to go to bed early, had many bad, vivid dreams. My back hurt, shoulders ached, joints were stiff. Above all, I was exhausted. Damnit, I was angry with myself for being so weak.

It's real, this thing, and only now starting to be recognised, rather like PTSD a few years ago. It can affect anyone caring for family, and the causes are often the same. Caregivers seem to become martyrs to their role, sometimes even forgeting that behind the pain and suffering, is a loved one who still needs the carer to play the long-standing role of spouse, lover, offspring, brother, sister. Friend.

It's hard to be all those things, provide day-to-day support, often round the clock. I would forget to take care of myself. didn't make time for a catnap even when I was exhausted. I lost count of the cold breakfasts I rediscovered at midday, the half-cups of tea scattered around the house. Did I mention not going to see the doc? I would try to get out of the house once or twice a day to take a brisk walk or cycle ride. Once in a while I remembered and made time, to meditate or stretch. Then I would just forget to eat, get to tea-time and realise that the half-slice of breakfast toast that I'd eaten at ten-thirty comprised my entire intake for the day. Feed everyone else, then rush around being the martyr again.

Fixing the Problem by asking for Help

"Give up sainthood, renounce wisdom, and it will be a hundred times better for everyone." - Tao Te Ching

All I can say is "Thank God for friends!". Were it not for them, most meals would consist of rice, beans and maybe bacon. Cheese sandwiches. Friends brought food - someone organised a rota to bring meals two or three times a week. Friends sat with Christine and sent me out to have coffee. These days, friends come overnight and stay in the room with Christine so I get some unbroken sleep.

This weekend, several noders showed up with gifts. Gifts of food, beer, time, treats, cash. Gifts of love, companionship, conversation, sharing. Were it not for them I swear I would have folded up into skinny, dark-eyed madness weeks ago.

Thank you for friends, because otherwise caregiver syndrome might have been the death of me. I cannot imagine what it would be like on my own.

The "fix" is simply, to seek help. This was the hardest thing for me - even after starting hospice care, I would try to do everything on my own, and that simply Will Not Do. Many people offer help, so a caregiver should accept it. Lots of laundry? Ask for help. Dishes in the sink? Ask someone to do them. Errands to run? Give someone a shopping list and a handful of cash. Above all though, get professional help. See a doctor, a counsellor, talk to a nurse, a social worker, spiritual counsellor, priest, whatever you got.

When people ask "What can I do?", and they will, tell them about the pile of laundry that needs folding, or the hallway that needs sleeping. The best friends come round and, unasked, do stuff, like the woman who turned up with mop and bucket and offered to clean our bathrooms. I said "yes", and that is the fix.