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.

Positive Caring

On reflection, my last post was a tad unbalanced. It is a hard row to hoe, I admit, but I recognise that there are positive aspects, and I feel the need to address those now. I've done venting and feeling sorry for myself for now, I'm ready to move on.


One of the things I've learned from my reading of others' experiences is that there's nothing like a life-critical situation for changing one's perspective. In the case of Christine's cancer, there's always been that "Oh my God, things are bad" feeling for both of us; when we first began this journey, nearly seven years ago, there was a lot of fear, uncertainty and doubt about the future, but also a sense that "this is worthwhile doing".


I can't really feel too sorry for myself; after all, I volunteered to do this. When Christine was first diagnosed and the seriousness of the disease was apparent, I immediately came over to join her. I'm no shrinking violet, I made my decision; made my bed, so to speak.


So without further ado, here's a glimpse into the positive:

The Angry Carer

Scared? In shadow? You bet.

A few months ago, Christine gave me the book Grace and Grit to read. The author, she said, is quite the philosopher. "Good", I thought, this will do me the power of good; a man describing the joint journey of a couple going through cancer. The ups and downs, the coping, the dealing, the however-many-stages-of-grief. This, I thought, will be good.


I read a little; I thought a little. I read a little more; thought a little more. Read more, thought more. Then I read some more, and stopped. It turns out that my journey is very different from his, Christine's from Treya's. It irritated me, he irritated me, and I finally decided that this was a book I would gladly burn pop in the yard sale box.


There is, of course, a reason. I am not Ken Wilber. I'm a little angrier than he; coarser, more...vulgar. I dislike bullshit and I declare that "it's not fair!" because deep down inside I still have the little boy who wants and expects the world to be a just and honest place, where there are no monsters hiding under the bed.

On taking a new direction

"Happy families are all alike; every unhappy family is unhappy in its own way" - Tolstoy, Anna Karenina

A man in our men's group recently described a few aspects of his family. He has come to realise, after many years, that his father is a bully, and his mother, well let's just say that she's no saint (in his own words, a slut). Given that he's on a journey to deal with his feelings of being bullied, this has made him angry, let down and betrayed by people who should have been giving him positive role models.


Having worked on his own "shadow" stuff for sometime, he has recognised the darker side of his own nature and learned to be accountable for his actions and feelings, particularly in respect of his dealings with his own family. He's developed good communication within the family, and modelled respect for open and honest family values, and the realisation that his own upbringing was to some degree dysfunctional, has thrown his own life into sharp focus. Despite his own upbringing (his father's egotistical bullying and his mother's immorality), he learned not just to resolve problems but to avoid the issues in the first place.

First step in a new direction

No "victim" status for him; he's taken responsibility for his own life, warts and all, and now acts in a way that supports love, openness and nurturing.


I have done the same, in that I've recognised that some of my default responses to even momentary stress or difficulty in my relationships, are flawed and needed to be corrected. To this end, I now act in
harmony with a personal mission to foster good, open and empathetic communications with everyone, but my own family circle in particular.


This raises a question for me now; why do not all men (and women, come to that) see their role as loving warriors in their lives? It turns out that there's a pretty simple and straightforward reason for this. Most of us do not learn how to express feelings in an honest and constructive way, that fosters communication rather than conflict. Men in particular have few good models for this - often the only emotion they are able to express is anger, and uncontrolled, rageful anger at that. Frequently, men are told to hide their "softer" feelings such as love, sadness, shame and empathy; they effectively stuff them into bags and learn to show only their rage, often at themselves.


I will illustrate this with my experience, to demonstrate how I take responsibility for myself. For example, I would find myself getting angry with my 13-year-old stepdaughter for not putting her dishes away at the end of a meal. This escalated into an argument about how she never noticed that things needed doing in the kitchen, for example, loading or emptying the dishwasher. In addition, I'd get cross with my wife if she interrupted me or wanted to continue a conversation I was done with. The person I was really angry with was myself.


This created barriers to good communication, and I only realised how effectively I was shutting my most-loved ones out after I attended a New Warrior Training Adventure weekend, during which I learned (among other things) that when I would get angry with others, it was often over things that I also did. It turns out that I had failed to recognise that I often neglected kitchen duties, for instance, or that I was also guilty of interrupting. This, I realised, was hypocritical, and that I needed to take steps to change my behaviour.


Over the course of the weekend, I learned how to be accountable for my actions, not just to myself, but to others. I needed to own up to my shortcomings honestly, and take action not just to correct the behaviour, but to offer something to make amends. I also learned to acknowledge my shadow-self, which I (in the company of many other men) ignore. The "shadow", in Jungian terms, is that part of us that we ignore, hide, are ashamed of, and for whatever reason, goes unacknowledged. We're all too often encouraged to hear only criticism and to stuff our "childish" needs, feelings and actions away.


These parts of us, figuratively stuffed into bags, we drag around for the rest of our lives, pretending that they don't exist, and all too often letting them not just hold us back from expressing ourselves openly and honestly, but even allowing ourselves to use them as unconscious excuses to sabotage our own good efforts. In modern parlance, we "act out", behaving in ways that are immature, damaging to all around us and damaging our ability to become good human beings. We become stilted men, hobbling through life; immature and incomplete.


Is there a solution? Well yes, there is. I've begun attending a men's circle and keeping in touch with the men I've met there, and I'm proud to say that in the past few months I have taken huge leaps forward in knowing myself much better, more honestly. The side effects are equally beneficial. I find myself unable to make excuses for my behaviour - I'm forced to be honest because I know what drives the anger, insecurity, fear and lack of action. I'm pleased to be a New Warrior.




If all this sounds somewhat evangelical, well it is, and I make no apology for it. I'm proud of what I'm doing.