The question of how to return to a “normal” life after caring for a terminally ill loved one is the subject of this week’s article. The following is a compilation of experiences; if you can relate to any of what follows feel free to write to me and share your thoughts:
One minute you are leading a normal dull married life and then suddenly something happens and you wake up the next morning to discover that you are now the full time untrained care giver to a critically ill spouse. It matters not what the state of the nation was “before”; the person in front of you needs you like never before and regardless of whether you are heart broken or raging you shove aside your own devastation and you rally.
You naively assume you can handle this – there are pages of instructions and books to read. There are appointments and treatments and schedules to keep. There are plenty of relatives toing and froing and you assume that your family will see you through this terrible time.
But a few weeks go by and the reality of this situation becomes almost normal. The casseroles stop coming and you quickly discover that while you always did more or less run the house, you are now the procurer of everything. You make endless trips to the pharmacy, you count and dispense pills at all hours, you have the bathroom fitted for a shower chair and then the furnace breaks and you call twelve repair services searching for one that can come today. Then the lawn needs mowing and the patient manages to generate three times more laundry than they did when they were healthy but somehow you handle it.
Sleep is a distant memory as is a trip to the mall. Groceries are purchased in huge quantities in anticipation of the need for many small meals at very strange hours, and it’s been so long since you or the dog had your hair done that you both have a shaggy overly dishevelled appearance. You don’t care – you are busy caring for someone.
But then just when you think you can handle this, an ambulance is summoned in the middle of the night and the most unthinkable, unacceptable happens; and without warning there is suddenly no one to care for any more.
You go home to an empty house and wander aimlessly in circles washing things, cleaning things, folding things that don’t need folding. You are a robot going through the motions and doing anything you can to avoid thinking because you don’t know how to stop; because you can’t stop; because you are afraid to stop; because you have no idea how you will go on if you do stop.
Eventually exhaustion envelops you and you do stop. And for a while you sleep and stare into space, or at the TV, or the dog and as agonizing as it is, you find yourself wishing that there was someone there to care for you for a while. This can last a short time or a long time, but eventually you will realize that you already know a highly skilled person who can care for you … YOU!
Don’t try to do too much at first – have breakfast in bed, get your hair done, or have your teeth cleaned. Sit on the porch, or read a book, or go for a walk, or buy yourself some flowers. And when you get your confidence up buy some new bedding, or a new sweater or your favourite magazine; it doesn’t matter what you do – it matters that you do allow yourself to be kind to you. The only way things will get better is if you take care of you.
You may be tempted to feel guilty about this – if you do talk to an expert. Friends and relatives really have no idea what you have just been through, or the toll it really takes on you; allow them to help in small doses too if they offer.
Diversion is a good thing – make a list of small ways to fill the day and small meals to cook for yourself; you are used to running on a schedule (whether you realize this or not) and you may find this oddly comforting. You also might feel like you are just going through the motions in the beginning; that’s ok too. Just stick to your new routine of self-care and things will get better in time.
This is unquestionably one of the toughest things you will ever have to do in your life, and it cuts deep wounds, very deep. The truth is, that while family and friends grieve with you, it is ONLY you that experiences the full spectrum of emotions. Time is a great healer they say – and they’re right – just sometimes the clock ticks ever so slowly.