I think one thing that unites all caregivers, whether autistic or not, is the experience of feeling extreme exhaustion. Being a caregiver to a loved one is very exhausting work both emotionally and physically but especially emotionally. The daily toll on your body and mind is like a giant vacuum that just sucks all the energy out of you and replaces it with an emptiness, a numbness of emotions and your body goes into auto pilot.
Being autistic, I am always exhausted. Dealing with the daily tasks of just living takes just about everything I have in me. Dealing with people, overload of sensory input of traffic, lights, noise, etc etc puts me in a state of exhaustion so deep each day that it takes hours to recover. So add in the caring for your elderly mother 24/7 and the exhaustion multiplies tenfold at least.
I feel like most days I am a walking zombie, I can’t focus, I can’t remember things I should, I can’t get ordinary daily tasks done. Brushing my hair seems overwhelming, loading the dishwasher seems overwhelming, writing this blog seems overwhelming. And then if you add in a change or a minor crisis or even a major crisis it can be enough to begin screaming in your head. On the outside, you gotta keep going. You are the caretaker, you are relied on, you are the lifeline of the one you care for. Without you they would be in dire straits. Especially like me when I am the sole caretaker.
I used to chuckle when my father was alive and he would be reading the newspaper – a favourite activity. Invariably, the newspaper would start to crumple and Dad’s head would wobble and then droop down. He was falling asleep. As I watched suddenly the paper would straighten and his head would whip back up and he would look around sheepishly as I laughed at him. This would happen over and over and is a favourite funny memory of my Dad. Well, although I never thought it would happen, I am beginning to take after my Dad in this area. I will be in my easy chair and the next thing I am waking up an hour later! But I must admit that nothing wakes me up faster than falling asleep with a hot cup of tea in my hand. When that tea spills over into your lap, you are alert instantly!! This has happened to me a number of times over the last year. I don’t recommend it no matter how much you want to be alert!!
Some evenings I can’t stay awake to get Mom ready for bed at 9:30pm. I have learned that I need to just set my alarm and then go to sleep for the evening. Fighting the exhaustion is a losing battle so you just gotta find ways to get around it.
So what do we do with this exhaustion?? It’s a given when you are a caregiver. It’s not going to go away, in fact, it will probably just keep getting worse. Well, I am told I have to take good care of myself ( which I am not very good at). Eat well, get enough sleep at night, take time for yourself, exercise are a few things you can do. I personally take lots of cat naps even for just 10 min. or so. I sit in my chair with my blanket wrapped around me and just veg for an hour. I do my art. I go shopping ( my autistic form of wandering). I also turn to my faith for strength. I believe God gave me the job to look after my Mom and when God gives you a job He will provide all that you need to do that job. I can be so exhausted but I seem to be able to get what needs to be done done. I have never in the last 4 years my Mom has been living with me not been able to attend to her needs. I always have some reserve that rises to the top to get me through and I attribute that to my faith.
The other thing we need to do to deal with the exhaustion is rely on others whether they be friends, family or community supports. I am not very good at this I am told. I am very independent and like to do things myself. I have trouble with PSWs coming and going from my home. I am very particular about the way things are to be done. Often it is less stressful to do something myself than to allow someone else to do it. BUT…. in order to keep going in this struggle we have to relinquish some of our determination to handle every thing ourselves and allow others to help. I think this is one of the most difficult things I have had to learn in this journey and I still have a long way to go.
So I know the exhaustion is here to stay. It’s just a matter of managing it well enough so we do not lose touch with our job as caregiver and the fact that we are our loved one’s lifeline. We’ve got to stay afloat and be that lifeline in the best way possible. It’s a very trusting responsibility, one we can never take lightly.
I think I need to take a tip from my cats. They cat nap all day long and I need to do the same when I get the chance – just not with a hot cup of tea in my hand!