There really are a lot of variable involved, in being the primary caregiver. It isn’t just about managing the medications, or even just being there, in case of an emergency. It is much more than doing the laundry 2 or 3 times a day, when needed. It is more than just making the meals, and insuring they are eaten or at least mostly eaten.
Caregiving is about patience.
You don’t have an outlet to get into a good old fashioned shouting match, nor can you get into a disagreement with the Patient, for the simple fact… you can’t win.
You have to weigh every word you say, because some of the most common words, can take on a whole new meaning with someone who is 94, and knows they are a handful. They worry about it, they feel bad for it too, but they want to be told that it is okay, that no, they aren’t a burden. So words like ‘difficult’ or ‘trying’ can be like a nail to the heart for these people. They’ll twist it to think you are tired of them, that they are too much of a burden.
It is a natural worry, when you are Mom’s age. Yet it is magnified when others dare suggest that she is a burden. It’s been two years since the wise and all knowing VIHA rep and BCS rep broached that subject, in front of her, and it continues to crop up.
Old people fixate on things, they imagine things we can’t fathom, and no matter how hard one tries, you are not going to placate them. They simply won’t let you. At times you want to just walk out the door, and not return, or just go away, and leave it all behind you. Your insides twist and turn into knots, because you know you can’t say anything, for fear of it only becoming worse. You have to be patient, and smile and cajole, when all you really want to do is just scream at the top of your lungs.
If you aren’t a full time caregiver, with no relief but one hour a morning, you’ll understand. IF you are lucky enough to have others share the chore, you may have a glimmer of what I mean but until you walk in these shoes, you really won’t get it.
Your life doesn’t revolve around your wife, your friends, or even you. It is confined to working around the needs of a 94 year old, who simply doesn’t even know her needs. Like she reads a book, with only 10 pages to go, and tells you she’s read the book before, and needs another to read. Like she stares at you when you ask how she is, and she says she doesn’t know. She will give you a blank look when you ask her if the pillows are adjusted right, then as you leave she tells you they aren’t, or she’ll suddenly say she isn’t feeling well, but can’t tell you what is bothering her.
This is not just being there, this is your life. Yet, you still have to keep the household running, do your work, and all the time she is whimpering, but says she isn’t. All the time you are trying to concentrate on doing whatever, she is coughing and wheezing, but won’t say why. It is maddening and worrisome too. Is the cough due to fluid in the lungs, or did she simply put more juice in her mouth, when it was already full of juice? And don’t say anything, because she’ll tell you that’s not true, or that she needs to hold the juice in her mouth to manage the pills. Course the pills are long since taken, but she swears there is one in the mouth.
That is caregiving 24/7 and it doesn’t get easier the longer you do it. It only wears you down more, until you hate hearing the alarm go off, signaling another day. You wake up discouraged, before it even begins, because it ended as it always ends, in utter frustration and worry.
That is caregiving 24/7.