I do a lot of research on Dementia and Alzheimer's. Most of the information is clinical rather than anecdotal. There are a few things I have come across that delve into the caregiver's perspective and how to get past negative feelings to be more effective in caring for loved ones. However, the overriding body of work on the subject approaches it with dos and don'ts. 'Do speak gently, slowly, simply. Don't accuse, question, correct...' Do this, don't do that. On and on it goes with the dispassionate how-to approach to caregiving. I could write a book on the dos and don'ts. It's fine for caregivers who have no emotional attachment to the patient. Oh sure, they may grow to like someone but it isn't their mother or father, husband or wife. A caregiving worker is there to provide care professionally. He or she is paid to be nice and to do the 'DOs' correctly. At the end of the day a professional caregiver can go home; eight hours on and 16 hours off. No emotional attachment.
Doctors, nurses, social workers, and others engaged in advising family members tend to focus on the things they see when patients come to them. They teach family members about the illness, what to expect, how to handle it. But... (and here is where I will now step upon my soap box) who is caring for the Family Caregiver? You know who you are. You are the one who is providing caregiving in the home, the one who is there 24/7, who gets no break, who cooks and cleans, who worries and frets, who deals, and deals, and deals, day in and day out. You are the one who repeats the same instruction over and over, provides the same answer, who leads by example, who calmly, quietly, gently coaxes, who diverts rather than corrects, who smiles rather than frowns, and who watches, hovers, 'mothers', remains alert throughout the day and night. You are the one who (might) get a few hours of respite to run errands but who remains on call -- the go-to person for all things related to the loved one for whom you are caregiving.
When the caregiver slips up, when it becomes overwhelmingly difficult, when the rules get broken and when the Dos and Don'ts get thrown out the window, what happens? I looked at this and began to see that there is no safety net out there. When we fall off the 'perfection platform' into the dark abyss of impatience, frustration, and even anger there is no lifeline thrown to us. We are on our own. We claw our way back to self-composure.
This is where we are missing the mark. We need to approach this whole caregiving thing differently. Instead of DOs and DON'Ts how about replacing them with WHENs and THENs. Allow me to explain further with an example: My mother just blew her nose in the shawl I had painstakingly knitted for her.
Scenario I: "Wait. Stop. Here's a tissue," I tell her in a calm and cheerful manner. I hand her the tissue, take the lovely shawl and throw it in the washer. When I return to the room where my mother is sitting she is taking the tissue and shredding it. "Oh my! That looks like fun. Perhaps you would enjoy shredding more tissues," I suggest as I hand her the box so that she can enjoy the fun activity. Later I am on my hands and knees picking up small bits of tissue all over the carpet and the rest of the house where she has tracked shreds as she has wandered about the house.
Scenario II: "No, NO, NOOOOOOO!," I shout loudly. "What are you doing? That's not a tissue, that's a shawl!" I am angry and disgusted. I have just finished cleaning up after my mother has made myriad messes in the powder room, the kitchen and family room. She has left masticated food she removed from her mouth and put on the counter for me to clean up, and ground in the remains of a chocolate muffin on the carpet. Her used tissues have been left on the table, her soiled undergarments have been stowed in drawers with linens. I won't even begin to describe the 'joy' of finding excrement on doors and walls. I have had four hours of sleep because Mom was wandering around all night, and am competing with the constant noise of the TV broadcasting loud enough for her to hear. My nerves are frayed, my body is tired, and my joy and love is running on empty.
Scenario III: "Mom? Perhaps you would like a tissue," I tell her gently but firmly. I feel my blood boiling and am trying to keep a lid on the angry outburst I would like to have. I remind myself of what I should be doing...how I should be reacting; but it's not working. I am rapidly approaching that out-of-control moment when I act out inappropriately by yelling or accusing, by blaming, by babbling angrily, by showing disgust. "Uh oh," I tell myself. "WHEN I find that I am about to lose control THEN I need to take a moment." I remove myself from the room and sit down in my favorite chair. I count from 1 to 10 paying attention to my breathing. I tell myself my favorite mantra. I repeat it over and over, "Calm and relaxed. Calm and relaxed. Breathe in and out slowly. Calm and relaxed." It's working. A minute or two later I am able to rejoin my mother with a smile on my face.
So, let's look at the three scenarios. The first is the pie-in-the-sky scenario that the professionals would have us believe we can do and should do. The second is caregiving gone awry. That's the one I believe we all tremble over, worrying that we will become that person and often do! That's the caregiver burnout scenario that signals it's time for a change. The third scenario is the most practical scenario. It is the one that caregiver support groups should focus on, and the one I believe more books and articles should address.
When this happens, then look at how to change your own behavior. Look for the things that will calm you down, Look at the reasons (the buttons that get pushed, the motivations, the sensitivities, the triggers) and find the solutions based on your own wants and desires. For example, if cleaning up vomit makes you gag and triggers the kind of behavior that will humiliate your loved one for whom you are caring then look at a way to remove your loved one while you are cleaning up the mess. (Okay, I confess I am that person! I remind myself that it isn't my mother's fault that she has done something that disgusts me. It is my personal trigger based on some really awful stuff from a long time ago. I acknowledge this. I allow for the fact that I am having a blown-out-of-proportion reaction. But I don't let her see this. I muster as much control as is humanly possible and put Mom in another room while I proceed to bluster and blow, gag and show my disgust in the room where the mess is. Meanwhile, from the other room, Mom is unaware that anything has happened. There is no humiliation, embarrassment, or shame. By the time I am finished cleaning up, my immediate reaction of disgust or even anger and blame has dissipated. ) It is just another event in the many unfortunate events that occur when a loved one is ill.
Caregiver support groups and those who are involved in caring for caregivers need to be cognizant of this when advising or listening to their stories. It is tempting to provide the should and should nots, the dos and the don'ts. I beg...I beseech, please try harder to address the whens and thens. That is so much more effective in allowing for a successful home-caregiver experience!