Spiritual Healer’s Handbook — Everything is Transient Dealing as a Spiritual, Magickal Caregiver of Alzheimer/Dementia, Terminally Ill Patients or Health Challenged Individuals
by Silver RavenWolf
The title up there seems to be getting a little longer as I read through the comments of the posts and talk to folks. Although each patient and caregiver has their own, unique challenges we all fall under the “we are the responsible scenario”…do or die…that’s us. We may be sailing with different flags; but we are still navigating the unsettling waters of the caregiver experience whether we are doing at-home care or we work in an environment that requires these responsibilities from us.
Right now, while I’m talking to you, the person I am responsible for is talking to the wall.
As I look back over the several years of this journey, two thing becomes particularly clear, and I wish (although I briefly acknowledged my observations at the time because I did catch that wary look in the doctor’s eye) that I had paid more attention. First, everything is transient. Everything. And even though you try to make a routine out of the process, the process does not lend itself well to routine.
Last night I sat at the dining room table and wrote down all the things I did in an effort to keep continually adjusting to make life easier (or more healthful) for our family member. From timing to physical items, to practically becoming a hermit –the list grew longer and longer. In the end, I stared at my notes and realized life in the last few years has been a process of hundreds of adjustments — some of which worked, some didn’t, and none of them held firm for long periods of time. In the beginning, if someone had said to me, “Prepare to Be Fluid” I think I would have done a better job. I was pretty good with the creative end of things involving change; but, not so hot on the: Now I’ve implemented this great idea, things have once again changed, and so I must adjust…AGAIN. One tends to get a little testy when the earth continually quakes beneath your mental feet (and you thought all those tremors in my area this year were odd — ahahahahaha!).
The second thing I learned is that your biggest enemy is not the disease, dysfunction, challenge, or malady — its the fear.
Fear of the unknown.
It surely would be nice if a smartly dressed conductor handed you a time table, and said, “Okay — your family member has dementia. Your train ride on the Dementia Line will last five years, six months, two days, four hours, ten minutes, and thirty-six seconds. Can you hold on for that? Good! Here is a list. Study it. By Stop 10 you will need to purchase a different kind of walker and the patient will try to beat your head in with it. At Stop 23 you will be handed a pack of 3×5 cards, a magick marker and a labeling gun so that you can label everything in the patient’s house because they will forget what these items are and try to eat the soap for a snack and wash their clothes with peanut butter in the kitchen sink. They can still read, so you have that going for you. Stop 28? This is an interesting one. Here, you will find the patient dressed in garbage bags. To avoid this, organize the essential clothing and begin handing it to the patient at Stop 27. At Stop 30 you will find the patient is sitting upside down on the floor in between the headboard and the bed. You will have to put the patient right side up and remove the headboard. It is our suggestion that you remedy this situation early on by child-proofing the home, that way you won’t pull your back out and be limping around for three weeks. All things fire related are a no-no because the patient will try to clip the toenails with a lighter. Stop 44 you will need to change diet. Unfortunately, at Stop 52 there is a layover because you will be forced to remove all extraneous furniture, nick-nacks and other items because the patient tends to crash into them…or throw them. If you would like to keep that flat screen television and those two standing lights over there, you will place them where the patient can’t reach them. At Stop 65 we recommend you purchase thick handled silverware and child safety cups. Do not give them a knife, please. At Stop 77 you will stop using a top sheet because it can cause bed sores. We’ve found light jersey blankets wash easier and don’t rub as much. By Stop 80 you will wake one morning to discover that the patient is wearing the dirty diaper on the head like a hat. This is unacceptable and a Dementia Train health violation. I know you will attend to that immediately….
There’s more — but, at the ALL KNOWING Train Station, you’ll always be prepared!”
In fact, the first line on your time table should say: Beware the Full Moon and Holidays! Your patient will be on his or her worst behavior…count on it!
But, that’s not how life really is, is it? There’s no list, no time table, no Users Guide to the Universe of Dementia (or whatever). There’s just you, your extended or limited family (or not), and the patient.
And the fear — of everyone.
You have one kind of fear — the patient has another kind. Both crash together to create unnecessary fireworks, unless…
you take control of your own fear and embrace the idea that adjustment is necessary and can actually be fun if you put your creative mind to it.
Fear, as I have always parodied off the movie Dune, truly is the mindkiller. It makes you go numb, or weep, or grieve, or keeps you from doing what you need to do for yourself as well as the patient. In particular, I’ve heard comments from many people who are directly caregivers or who are affected indirectly, say: “It breaks my heart that they will forget me.”
Okay. Look at me. No, really look at me when I tell you this. Can you feel me holding your hand? Good! Listen! They are NOT going to forget you. Yes, the Base Mind I talked about in the first two articles? That mind forgets you because you don’t exist to it. You never did. But, and this is a big B-U-T here, the Higher Mind? The Spiritual Mind? The Soul Mind? That part of the individual never, ever will forget you, their love, the fun you’ve had, the times you’ve shared. Not ever. And when they finally pass? The base mind will fall away and the Higher Mind will be in control (eventually) and you will still be as loved as you were before all this mess started. Don’t ever, ever grieve that you are forgotten — you’re just a bit misplaced for a time. No biggie.
I once turned to a friend and said, “Maybe there is Alzheimer’s so that you do all the forgetting of the earthly here, so that you can move higher and faster when you get over there.”
Something to think about, right?
So! Back to getting your fear under control. Here are some helpful hints:
1. Research the beast. Read all that you can so that even though you don’t have a real time table, you have a general idea of what might, or might not occur.
2. Take the time to evaluate yourself and how flexible you really are. I’m fairly flexible; but, as I get older…not so much. My husband, the other caregiver in the home is not, by rule, a flexible person. Negative change is particularly hard — positive change can go smoothly or with a little coaxing. How will your behavior (and that of a helper if you have one) affect what is to come in regard to this situation? Think of ways to encourage yourself to be more fluid. Like a good friend of mine once said, “You know — its all in your perception.”
3. Add humor to your life. My son and daughter-in-law reminded me the other day that it is okay to see the funny side of patient behavior. I was trying so hard not to be disrespectful that I was feeding into the drama rather than hovering above it and seeing the lighter side of the situation. If you can’t find humor inside the issue, bring it in from the outside — movies, television, tapes, cd’s — whatever. I once watched an entire day of Shaun the Sheep. Really. And, yes, it helped.
4. Let go of your anger and resentment. Yeah. This is a tough one. Even though you may be saying — oh, I don’t have that — think again. Anger and resentment are natural. If you deny these critters they are going to eventually eat you alive. Better to acknowledge, release, and move on.
There are several ways to do this, step by step, you don’t have to open the flood gates all at once. Be creative. For example, every time I walked into the room for a time the patient screamed at me. It got to the point where my knees would tremble when I turned the door knob. “It is like the story of Bill Goat’s Gruff,” I said one day to my daughter-in-law. “I feel like I have to pay the troll my feelings whenever I go through the doorway.”
“Well,” she responded, “why don’t you place a jar by the door, and before you enter the room, put a penny in it as payment.”
I blinked.
What an interesting thought! And so I did! It took two weeks, and then the verbal assaults just…stopped. By my behavior of pre-paying, I walked into the room with different expectations. The situation changed. I took the pennies to the coin machine at the grocery store and gave them to charity.
You can also be very brave and write down everything that you feel makes you angry and resentful. Many times we are embarrassed at our feelings — they are inappropriate, mean, maybe cruel, vindictive — but, we have them just the same. We don’t want to write them down because someone may see what we have said. No worries here — for this exercise you burn the paper immediately in a fire safe bowl, and do a release chant as you watch the flame heighten, then wither and die. Take the ashes off your property and bury them. Seal the ground with an equal-armed cross, then walk away without looking back.
Summary: In this article we cover three really important points — (1) Allow Yourself To Be Fluid; (2) Recognize and Deal with your Fears; (3) Know that you will never really be forgotten.
Thanks so much for reading. Your comments have been wonderful! Please keep them coming. If you have insights you would like to share, I do hope you have the courage or time to do so.
We are a Village.
Peace with the Gods Peace with Nature Peace Within. So be it.