She has old bones. And they hurt. Wrist, elbow, shoulder neck. Hip, knee, ankle, toe. They all hurt.
I give her two Tylenol, and she sleeps. I hear her whimper. “Please,” she whispers. She’s never been able to tell me “Please what?”
Her old bones hurt. Teeth. Fingers. Time makes old bones. Her bones have had too much time.
My bones are starting to hurt too.
Too often these days I feel as though I’m walking a tightrope. It would only take a little push to take me over the edge.
At night, when I can’t fall asleep, I listen to books on tape that I download, free, from my local library. They are usually mystery novels — situations so far removed from my own life that I can forget, for a while, what is stressing me out so.
Tonight, the “heroine” of the novel drifting in through my ear buds gave a clinical definition of anti-social behavior. I was interested to learn more about what that was, since I often feel I’m in it’s presence.
Some googling, got me to this:
Anti-social personality disorder symptoms:
* Disregard for society’s expectations and laws
* Unlawful behavior
* Violate rights of others (property, physical, sexual, legal, emotional)
* Physical aggression
* Lack of stability in job, home life
* Lack of remorse
* Superficial charm and wit
* Impulsiveness
Hmm. What if someone exhibits the above characteristics but on a less lawless scale? I guess that would mean they have “borderline anti-social personality disorder.”
Or maybe what it really is, is just plain “borderline personality disorder.” Sure sounds like it:
Borderline Personality Disorder (DSM-IV Personality Disorders 301.83[1]) (BPD) is defined as a personality disorder primarily characterized by emotional dysregulation, extreme “black and white” thinking, or “splitting”, and chaotic relationships. The general profile of the disorder also typically includes a pervasive instability in mood, interpersonal relationships, self-image, identity, and behavior, as well as a disturbance in the individual’s sense of self. In extreme cases, this disturbance in the sense of self can lead to periods of dissociation.
The disturbances suffered by those with borderline personality disorder have a wide-ranging and pervasive negative impact on many or all of the psychosocial facets of life, including ability to hold down a job and relationships in work, home, and social settings.
[snip]
This profile may be supported and/or corroborated by long term patterns of behavior as reported by family members, friends or co-workers. The list of criteria that must be met for diagnosis is outlined in the DSM-IV-TR
Yup. There it is. Borderline.
And here I am. Planning and packing.
from the (free) magazine for dementia caregivers published the Alzheimer’s Foundation of America (careADvantage, Summer 2008 — PDF) – an article by Richard Taylor, PH.D., a retired psychologist who was diagnosed with dementia.
When dementia enters a person’s mind, when it enters dynamics of a family – of a husband or his spouse – how we communicate, why we communicate should/will shift.
[snip}
It should shift away from mutual understanding and agreement and toward staying connected, giving and receiving love, supporting each other in ways we never thought we would have to do. It gets less and less about about the facts and more and more about feelings. It moves (quite unfortunately) from looking towards tomorrow to looking back at yesterday. (Today just gets lost!)
As the disease progresses, the burden of adapting, of figuring out what the other person wants/means/understands shifts more and more into the minds and hearts of caregivers.
About seven years ago, when my mother was first diagnosed with dementia, I started reading and researching what would mean for both of us. Slowly but surely, I became the mother and she became the child. That was something to which it was really hard to adjust. Now, she calls me her sister. I don’t try to correct her. It really doesn’t matter. I’m her primary caregiver, and it’s me to whom she looks for comfort and safety.
That’s why my stomach is in knots at the thought of leaving her with my brother, with whom I can no longer share her caregiving because we disagree on so many things of importance in every day life. I can take her with me, but he has POA over her finances. Control is a big issue.
I don’t know how he thinks he can take care of her without me and without paying to bring in qualified and caring help.
This is what today was like for me (other days, it’s giving her a shower, changing and washing her bedding, planning and shopping for her food, doing her laundry, cleaning her floors [which I don’t get to nearly often enough]):
11 a.m. – 2 p.m.: My shift. Mom slept until noon. When she got up, I made her lunch (of tuna and egg salad, which I made the day before during my evening shift and which she usually likes). She ate a half of her sandwich, a plum (which, of course, I had to peel for her), a cup of her fake coffee, and a couple of cookies. I gave her her antidepressant and some Tylenol because her shoulder was hurting. I wrote down the meds I gave her on the log sheet on the frig. I noticed that she had a sore in one nostril, so I put some salve on it. By 1:30, she wanted to take a nap. When my brother came to take over, I said I thought we should take her to the doctor. He responded with a detailed explanation of what he thought the sore was, and I couldn’t get him to agree that she needed to see a doctor. Not wanting yet another argument, I didn’t make the appointment.
2 – 5 p.m: My free time. I went outside to water my parched tomato and other plants, and then I harvested some basil and parsley for freezing. I killed a lot of Japanese Beetles and had to throw away two of the tomato plants because they were totally dead. Then I went inside and sorted through stuff I could give to the Salvation Army. I answered my email, ate a bunch of delicious cherries, played Scrabble.com with a friend in Saratoga, and did a search for where I could take my broken electronic stuff for recycling. It turned out that there will be a special day in this town where I could do that. I shared the information with my brother.
My brother’s shift. As far as I could tell, when she woke up, he gave her more to eat because she was hungry, and she went back to rest. He put the tv on and sat there tapping on his laptop. I stopped in at one point to use the stove to boil potatoes for salad. I came back to check the potatoes around 4, and he asked me if I made the doctor’s appointment. I said I didn’t because he didn’t tell me that he agreed that I should do it. He blamed me for misunderstanding, and so I called the doctor, who, it turns out is tomorrow and all next week.
5 p.m. – 8 p.m.: My shift: I made chicken and mashed potatoes for supper. She sat in her recliner in front of the tv and ate some cantaloupe while I watched the news from the kitchen. My brother walked in and started to check what else was on television. He does this often, and I reminded him that it was my shift and everything was fine and I was making her supper and we were watching the news.
He decided that she should have some root beer with her dinner (I would have given her juice). She ate her whole dinner and then I took her outside for a while to walk a little and then sit. While we sat, I cut and filed her nails. We went back in for dessert.
She was just finishing her fake coffee and cake when he came back in – poked around in the dish drainer and chastised me for putting a fork in the place designated for knives. (I have learned just to say “umm” and not try to argue because it upsets my mom) I knew that she was getting a little sleepy, but she was sitting calmly watching the tv with me while I made some potato salad (which she likes), so I left well enough alone.
He decided she should take her laxative and should lie down. So, he gave it to her and took her into her bedroom; but she sat up right away and started fiddling with the quilt. He started to be curt with her, which got her upset. I asked him to leave because it was my shift anyway. He finally left, and I had to sit down next to her with my arm around her for more than 20 minutes to calm her down. During that 20 minutes, I had to help her up to the bathroom three times. Her stomach hurt but she couldn’t do anything.
She finally agreed to lie down and rest.
8-11 p.m. My brother’s shift. My free time. I started this post, packed up some boxes of my stuff, fed the cat, got myself ready for bed, and watched my favorite summer tv show: Burn Notice. When I went down to start my shift, my mom and my brother were laughing and talking. She is fine when her caregiver is paying positive attention to her. She has agitated meltdowns when she is spoken to harshly or chastised for doing things wrong.
It is now 12:30 a.m. When my 11 p.m. to 11 a.m. shift started, I gave my mother a snack and a Tylenol, and then I helped her brush her teeth. She wouldn’t put on her nightgown but wanted to sleep in her clothes. I asked her why. She said because she was afraid. I asked her what she was afraid of. She said she didn’t know. She is often afraid but doesn’t know why. I’m haven’t gone to sleep yet because, if she holds true to form, until about 3 a.m, she will be up at least once an hour to go to the bathroom, and she needs me to help her.
She went to sleep without a fuss because her previous hours were calm.
I don’t want to leave her where I’m not sure she will get proper care. She will be lost without me despite the fact that she spends as much time with my brother as she does with me. If she stays with him, he needs to bring in qualified care. And that means that he will have to spend her assets to do that. But he doesn’t believe that I’m really going to leave; he doesn’t believe that our mom’s dementia is as bad as it is; he doesn’t believe that he will have to bring in qualified care to replace me.
I can challenge his POA and take him to court if he fights it. A lawyer I know said that, if that happens, it could cost me as much as $10,000. I can leave her behind, visit, and if she’s not being properly cared for, ask Social Services to do an assessment.
Both her doctor and the hospice nurse (who will no longer be able to certify her for hospice services because there’s no indication any more that she might be dying ) have said that she belongs in a nursing home where she can get 24 hour care.
Talk about being between a rock and a hard place.
But no matter what, I have to get out of here for the sake of my own health and sanity.
I did not post this lengthy piece just to vent and complain. This is part of my documentation of this unbearable situation that I’m in.
ADDENDUM: It is 1 a.m. The electric eye alarm that my brother installed goes off to let me know that she is up. She is sitting in bed. Where am I, she asks. You’re in your bed, I tell her. Where am I, she asks again. I try to get her to lie down. She pulls at her sweater. Take this off she says. Do you want to put on your nightgown, I ask. Yes, she answers. And so we change her clothes and she lies down again. And so the night will go.
That’s the question she asked as she finally sat up in bed somewhere close to noon today. Usually she asks “Where am I?” Obviously, her dementia has gotten worse.
I tell her her name, in Polish, in English, her maiden name, her married name. By then she’s onto her other worry — “Can I go home now?”
It’s night now. I was with her most of the day, since my brother had a dentist appointment. When I’m with her, I try to respond with care to every question, every mood, every demand. After all, her world must be truly terrifying. And I’m her anchor.
Except she’s my anchor as well. I can’t move beyond her peripheral vision, or she panics. She is downstairs now with my brother, banging her cane on the floor and calling for me. My contact at the Alzheimer’s Association local chapter tells me that it’s not unusual for dementia patients to latch on to the most trusted caregiver and constantly shadow them. That’s what she’s doing, and it’s making me crazy.
I am holed up in my room, television blasting so that I don’t have to hear her distress. I am eating cherries and chocolate chip cookies. My stomach is in knots.
Meds only seem to make her worse in other ways. She needs 24 hour care, and it’s become too much for two people. But my brother wants her with him.
And I want to get away from this whole situation, even though she pleads with me: “Take me with you.”
It’s beautiful here on the mountain. But it’s also a prison, especially for her.
“Where are the streets?” she asks. “Where are the families?” she wonders as she looks out the window at the lush trees and patches of blue sky.
It’s hard to take her anywhere because she needs a toilet nearby. And her mood can go from placid to panic in a heartbeat.
She has lived too long. I hope that I am not still alive at 92. Or if I am, I still have my mind and my sense of humor.
Meanwhile, I’m sorting through all the stuff I brought with me to this place and downsizing. And packing.
One of the distinguishing characteristics of the Halloween witch is that bump on her nose. Well, not only do I have one; I have three. I guess that makes me officially a witch.
The dermatologist says they are “fibromas,” which are benign kinds of tumors. Mine are under the skin, and so they are not really noticeable. I can have them “sliced off” (the doctor’s words), but insurances don’t pay for that because that’s considered a cosmetic procedure. He says it’s not a big deal to take them off, or out, or whatever they do to remove them. (But he’ll have to cut the skin, so how is that not a big deal??)
When I first got them (one ages ago, one six months ago, and one last month) I thought that they were sebaceous cysts, and so I put hot compresses on them and they eventually diminished in size, but they never went away.
At the moment, they don’t bother me, but I know they’re there. I can feel them.
I can’t worry about them now, however. In two days I’m leaving to head out to Massachusetts for my grandson’s sixth birthday, and I’m going to stay over at least three nights.
So it will be just my brother and mother. The hospice nurse suggested a change in my mother’s medication, so we’re going to try that. Her extreme anxiety is overwhelming her. And us too. I guess it’s her dementia getting worse. Between that and her increasing aches and pains, it makes it almost impossible to interact meaningfully with her. It’s like trying to take care of a sick toddler.
I often wish I really were a witch so I could get on my broom and fly away.
Myrln fidgets in the hospital bed in the emergency room, where they have him hooked up to various machines that beep and chime and whir.
“I just wanted a few more days. I needed a few more days. I needed time to think….” He looks at me with eyes angry and sad at the same time. He is back in the hospital after only two days at home from a week-long stay for tests and such. I have been with him for the past 36 hours, including this morning when we had to call a Rescue Ambulance because he couldn’t breathe, even with an oxygen tank.
We have been divorced now for twice as many years as we were married. But time had healed our wounds and we had developed a friendly relationship.
“I will be eternally grateful,” he wheezes, “for all you are doing for me now.”
My eyes fill with tears. “No problem,” I say.
“I have to tell you something,” he says. “Even through it all, there was always a little love left.”
“Yes,” I say. “Me too.”
And I’m crying and we are holding hands the way we once did long before I begged him to stop smoking.
Tonight he is temporarily hooked up to a respirator. b!X arrived from Oregon, and his sister and family from Massachusetts. He has not yet been awake for b!X and him to have a little time together. I hope he wakes, for both their sakes.
Meanwhile, I am back on the mountain with my mother, but I suspect will be be leaving again in a day or so.
They will take him off the respirator. He will either breathe or not. Either way, he won’t be going home again.
Myrln, who once blogged here on Mondays, is my former spouse, the father of my children. He has inoperable lung cancer, which has spread to just about every vital organ.
I got linked to this from a newsletter I get, and I’m sharing it here because it is a description, by a brain scientist, of the kind of experience she had that others might attribute to sensing “god.”
Still others, back in the days of “dropping acid,” often described something similar.
And others, yet, tried to achieve it through Transcendental Meditation.
It’s not in the mind; it’s in the brain.
Listen in as brain scientist Dr. Jill Bolte Taylor tells of the spiritual experience she had during her own stroke. This euphoric experience transcends all formal religions and has been pointed to by quantum physics for years. Watch the video.
from here:
….she was conscious as she lost the left half of her brain. She remembers the day clearly, when she eventually curled up into a ball and expected to die. “I was shocked when I awoke later,” said Taylor,… [snip] “I couldn’t talk. I couldn’t understand language. I lost all recollection of my life and lost all perception of my physical presence — I was at one with the universe.
(Monday is myrln’s day to blog here at Kalilily Time.)
1) ??? 2) ???
There are two items that could use some attention since both involve our tax dollars and in some ways, they point out just how ignorant we may be about the use of OUR money by the feds.
First off, for the past how long, we’ve been endlessly bombarded about the primary contests being waged to help find our candidates for the next president. We can’t escape the news about them — which in truth is good. It reminds us that our government is our choice and ultimately our responsibility. So far, what we’ve been seeing is a number of senators and congressmen mostly out campaigning, trying to whip up votes. Day after day they’re out “on the stump,” working hard to make their points to the potential voters.
Only, when you look a little harder or just sit and think about it, you come to realize something they don’t mention very much. Consider: for months they’re out there somewhere in the country and moving from one locale to another, days on end. What they are not doing during this time and in those activities is their job. Remember, they were elected to go to Washington as representatives of their state or district. Yet here they are anywhere but D.C. — while still getting paid, still getting health care (the best in the nation), and still piling up credits toward their pensions. All of it paid for with OUR tax dollars.
Doesn’t bother you? No big deal? It’s the process? Oh yeah? Try getting the same deal from your boss.
***
Item 2 is different. It’s this: why do we have an FDA, a Food and Drug Administration? At least as far as concerns new drugs coming into the marketplace? Without FDA’s approval, no new drug makes it out for sale here. Good idea, a watchdog for our protection against the release of dangerous substances. Oh yeah? Then why in this flood of TV commercials for new and existing drugs does every one of them finish off with someone sounding like a shady used-car dealer talking a mile-a-minute and warning us, almost unintelligibly he’s talking so fast, about all the potential dangers of the product?
If it’s so dangerous, why was it approved by the FDA for sale in the first place? Hm-m. Good question. Our tax dollars going to approve drugs that in normal use could harm us, even kill us.
A great service, huh?
That’s what it felt like when my therapist sent me on a guided visualization into my body.
Having one’s heart in the right place is a metaphor. For example, according to here,
if someone’s heart is in the right place, they are a good and kind person even if they do not always seem to be.
I “saw” my heart lower down and centered in that place where one usually gets “heartburn.” So, if my heart’s NOT in the right place, does that mean that I am NOT a good and kind person even though I often seem so?
After being home a while and contemplating the visualization experience, and after making a connection between feeling my visualized heart (which was radiating energy) where heartburn occurs, I’m pretty sure what I was sensing was the place in my body that stores up all the stress/agita of my living situation. My heart is burning. In other words, I have heartburn.
During the visualization experience in my therapist’s office, I released the burning energy I saw radiating from my heart out through my hands (which, as the therapist noted, rarely lie still).
Now, that formerly “burning heart” is still in that same place, sitting like the lump of cold coal that I once found in the toe of my childhood Christmas stocking (disobedient child that I was).
During my next therapist’s visit, I will ask to go back into my imaginal body and find out if I can do something to get rid of that lump. At least, for now, I am feeling more energized, less constricted in my breathing.
Yes, I do believe that there’s a strong connection between mind and body, and that many so called “miracles” of healing have something to do with the power of that connection. As are many so called “diseases.”
I’m not discounting medical science at all. I’ve had my share of surgeries and take my share of medications. But there often is more to the healing process than all of those tangible treatments.
As a poet, I know how powerful metaphors can be. As you enter into a personal metaphor, guided by a therapist trained to support you in that journey, you discover truths that you might never feel if you chose to engage in traditional “talk therapy.”
I don’t know where my inner journey will lead this time. My goal is to survive here until my mother doesn’t.
Here’s a good short guided visualization to try if you’ve never done one before. If you try it, please consider leaving a comment here to share what happened.