Just called the park and left a thank-you message for letting us use their pavilion for free. They grandfathered us in. Nice!
Was talking to my sister Amy in Eugene OR this morning while riding my stationery bike & mentioned I use an entirely different brain for writing than for talking. Amy's favorite mode of exercise is 'hot yoga' where you do your positions in a 104-degree room. Whew!
We all dressed warmly for the bonfire. It was quite chilly but there's nothing like a roaring fire to heat you up. I must say it's absolutely mesmerizing to watch the fire, you simply can't look away. At the end, we threw things in and watched em burn: such as marshmallows and pieces of Kleenex. Absolutely thrilling! Being there is its own kind of high.
My 3 favorite foods were:
Hot dogs - Helen got me the low sodium
Ada's brownies
hot cider
S'Mores
Pomegranate sparkling juice
Topics discussed at the Bonfire included: death by fire - the room fills with smoke and you can't see anything; arsonists (my adopted cousin, unfortunately I'd never met him, he smoked pot all day long; A Serious Man, the latest Coen Brothers film; ladybug infestions; the successful removal of a brain tumor for someone's psychiatrist.
Helen forgot to bring a poem to read, Little Orphan Annie. It was her dad's favorite.
Please pass the S'mores.
Quite a no. of times I was laffing hysterically. Nothing like a good laff. Or a good shit. The newly discovered Arnie is a riot. If something bothers him, he writes a letter. He wrote Waldfogel a great letter. Waldfogel told him he was OCD so Arn sends him a letter and never sees him again. The reason I laffed so loud is cuz I do the same thing.
I'd say for the first 20 minutes of the event people didn't talk shop. Then slowly this all-important part of our life insisted on sharing time between talk about gas fireplaces and solar panels and backyard swimming pools, maybe w/Carrie Fisher sliding home with her one-woman Broadway show Wishful Drinking, she gets maintenance ECT treatments, so we were in little groups under the covered pavilion while Larry turned the hot dogs on the grill and Helen stirred the hot cider on the Coleman stove (they're campers).
Marion brought a couple friends who waxed ecstatic about the bonfire. It was so good to hear total strangers praising the BF. It's like camp, they said. Camp for grown-ups.
Oh god did I feel like a grown-up yesterday. I got 7 new windows put in my house and a number of other improvements. They forgot their caulk and left it here. I hope I don't mistake it for toothpaste or cake icing.
I didn't bring up the windows at the bonfire cuz I haven't totally processed their appearance. It's like when you get a new car and you look at it with love and admiration. I'm in the early window-acceptance process as I lower it into my cerebellum.
Did you watch the NOVA show about the large Turkish family who walk on all fours? No one had seen it. That's a show you really wanna discuss w/someone.
As usual the conversation turned to the word Bonfire. I conceded that we don't really make a bonfire since we're not in the middle of an open field. It's really a campfire. When my kids were teens one of them used to have a friend who regularly made a bonfire. If you're a mom you're not allowed to attend these events as you might embarrass your kids. So I kept that concept in mind and then somehow when I discovered Tamanend Park, less than 15 minutes from home, I decided to try it.
That was 5 or 6 years ago. Massive organization on the part of Helen and Larry go into this. They work as a team. After everyone left for the evening, they sit in the folding chairs and burn all the logs they've brought. I never stayed with them before but did last nite. I knew Scott would be asleep by 10 pm so I could stay out as long as I wished.
Larry turned out the lights of the pavilion and we sat by firelight. When I returned from the bathroom behind my favorite tree, I reported there was a fine mist in the air. Not exactly rain. As we sat in our chairs Larry pointed at an opening in the ceiling where we could see the mist filtering down from the sky as a huge spiderweb swayed softly.
'I'm waiting for the officer to show up,' I said. When I'm not in a panic I don't call em cops but refer to them nicely. If, however, I'm driving or a passenger, I'm not gonna say, "Hey, you might wanna make sure you're obeying the rules, there's a police officer hiding behind the bridge abutment."
Finally a car pulls up and a man w/a flashlight heads our way. We figure it's about midnite, the time we said we'd be leaving.
What're you folks doing here? said the cop.
Larry and Helen spoke real slow, as if they were exhausted.
I told the cop we had reservations until midnite.
Did you reserve it for overnite? said the cop.
We didn't know what he was talking about until he left and we looked at our watches. It was 1:45 pm. We were shocked.
Driving home I took the beautiful backroads near my house. Fallen leaves had made a beautiful carpet on the road. Be careful of deer, I reminded myself. I was paying total attention to the beauty of the leaves and driving to the rhythm of the music on the radio. I was having major dopamine rush, or maybe it's serotonin rush. 80 percent of the serotonin in our body is produced in the stomach or intestines, hence the pleasure of eating?
Suddenly my car began to slide uncontrollably. Just for a second. Whew, that was close, I said to Jesus. Now drive slower, Ruthie.
At one point there were simply leaves all around, floating down from the trees in the misty rain, and on the road, and off to the side. I felt like I was in the Fun House at Euclid Beach Park back in Cleveland and my sisters and I were driving thru the Tunnel of Stars.
When I got home I removed the sign Bob's Home Improvement from the lawn. "I'm surprised you let him put it there," Scott said. "I didn't," I said. "He just put it there. He also went around the neighborhood advertising his services. That's how I found him."
The windows produce a deep happiness inside. Maybe I should join Iris's Happiness Group and advise people of the greatness of novelty in our lives.
Just put a sign on my front door. Remember, tonite is Halloween: Sorry, Gone Fishing.
I have no patience anymore for Halloween. I'm hiding out on the lower level of my house. How do you want to spend the evening, I asked Scott. "We could watch a movie and cuddle," he said.
You can't get much better than that!
Saturday, October 31, 2009
Thursday, October 29, 2009
My WorryList for the Cruise
This blogpost is an example of 'processing your emotions,' something I preach to everyone. My theory is that if I write these down they won't bug me so much when I awake in the morning and my mind turns on. Gong gong gong!
It was not until 7 this a.m. that I actually examined my itinerary and found out exactly when I leave - my daughter and I will leave from JFK Tues nite at 9:55 pm. We'll have 3 nites in Barcelona before boarding the Celebrity Cruise ship which'll tour the northern Mediterranean for a week. I emailed the ship my dietary regulations last nite - it was immensely difficult for me to do that - I included 3 kidney diet links and stated 'the one from scotland is the most liberal.'
My main concern is falling asleep aboard the cruise ship. The room will be pitch dark. No windows. I've packed a nite-lite. I'm worried about the sounds I'll hear. The lurching motor of the ship. The endless drone. Will it drive me crazy? Will I sit up in bed clutching my face?
No I will not take a tranquilizer. Mind-altering drugs are no longer my style. I take approx 12 different meds for my kidney problems. I threw out all my Klonopin long ago.
Before manic depression held me hostage for 20 years I was fearless. This is true.
PS - My fam doctor's office just called. I just hired him and am very pleased. Joanne said they just faxed over all my info to the Jefferson Kidney Transplant Dept. I thanked her generously and realized what a great choice of doctors I made. They faxed it immediately! Great service.
So, until the onset of bipolar I was just a regular gal, a prolific writer and newsletter editor for Art Matters, and then my brain drastically changed with the coming of the illness. Fear set in and stalked me day and nite.
Here's why I'm equating being on the ship to my illness. In the first few months after I got sick, I imagined I could actually feel the earth moving around the sun. I'd lay in bed at nite with the parking lots flicking over the living room which is where I slept on a couch and I'd feel this ever so slight movement of the world turning.
It was not a pleasant feeling.
Ya know something?As I'm writing this, I'm already feeling better about the ship.
Prior to the blog I imagined that when I closed my eyes in my state room I'd imagine I were an African tribal woman torn from her family and manacled with hundreds of others in the rank stinking quarters of the slave ship begging for food and water.
Oh, turn on your nitelight, Ruthie, to vanish such horrid thoughts.
Any other worries, Ruthie?
Actually they've been expunged by the very act of blogging. Is that possible?
It was not until 7 this a.m. that I actually examined my itinerary and found out exactly when I leave - my daughter and I will leave from JFK Tues nite at 9:55 pm. We'll have 3 nites in Barcelona before boarding the Celebrity Cruise ship which'll tour the northern Mediterranean for a week. I emailed the ship my dietary regulations last nite - it was immensely difficult for me to do that - I included 3 kidney diet links and stated 'the one from scotland is the most liberal.'
My main concern is falling asleep aboard the cruise ship. The room will be pitch dark. No windows. I've packed a nite-lite. I'm worried about the sounds I'll hear. The lurching motor of the ship. The endless drone. Will it drive me crazy? Will I sit up in bed clutching my face?
No I will not take a tranquilizer. Mind-altering drugs are no longer my style. I take approx 12 different meds for my kidney problems. I threw out all my Klonopin long ago.
Before manic depression held me hostage for 20 years I was fearless. This is true.
PS - My fam doctor's office just called. I just hired him and am very pleased. Joanne said they just faxed over all my info to the Jefferson Kidney Transplant Dept. I thanked her generously and realized what a great choice of doctors I made. They faxed it immediately! Great service.
So, until the onset of bipolar I was just a regular gal, a prolific writer and newsletter editor for Art Matters, and then my brain drastically changed with the coming of the illness. Fear set in and stalked me day and nite.
Here's why I'm equating being on the ship to my illness. In the first few months after I got sick, I imagined I could actually feel the earth moving around the sun. I'd lay in bed at nite with the parking lots flicking over the living room which is where I slept on a couch and I'd feel this ever so slight movement of the world turning.
It was not a pleasant feeling.
Ya know something?As I'm writing this, I'm already feeling better about the ship.
Prior to the blog I imagined that when I closed my eyes in my state room I'd imagine I were an African tribal woman torn from her family and manacled with hundreds of others in the rank stinking quarters of the slave ship begging for food and water.
Oh, turn on your nitelight, Ruthie, to vanish such horrid thoughts.
Any other worries, Ruthie?
Actually they've been expunged by the very act of blogging. Is that possible?
Wednesday, October 28, 2009
My own bouillebaise or fish chowder
Good cooks know that fresh ingredients, not frozen or canned, make for the very best food. Sure, it's time-consuming to cut up all the ingredients even if you do have your very own bowknife like I do. I usually talk on the phone while I cook in my green Starbucks apron with my cordless phone tucked in the pocket and headphones covering my ears. Yes, I have been known to prolong phone conversations, easy to do with my mother who tells me all the dreadful health news she can think of, while I'm sawing away at the carrots and onion.
FISH CHOWDER
Make friends with the Fish Department folks at your grocery store. Ask about where the fish comes from. I buy fish on sale. Or is it on sail. They all take turns. I buy scallops by the number. "Five large scallops please."
In huge pot, braise your veggies in olive oil and butter. Our bodies do need some fat, ya know.
-carrots
-celery - I've just rediscovered celery and munch on it while cooking. In my youth I'd drink wine. Not a good idea. I'd need a nap after that.
- onions, of course!
- red peppers (they add vibrant color)
- mushrooms, wipe w/a wet cloth. Don't soak them or they'll become spongey.
When nicely browned and the aroma is overpoweringly delicious, add your CHICKEN STOCK. I use a low-sodium boxed brand from Nature's Promise. Rinse out the box with water and pour in pot.
Next we're gonna factor in ingredients according to their cooking time. Since this is a meal-in-one, we wanna get our starch in there. Remember, a meal consists of protein-starch-and carbs.
-Brown rice. Why brown? Because white rice is de-natured. The germ is removed as is the endosperm. Let's keep our grains intact, folks. None of this 'whites only stuff.' There are laws now, aren't there?
Add your FRESH VEGGIES as available at the market. Remember the macrobiotic-diet fads? I never subscribed but do remember you were only allowed to eat locally grown food which probly made sense, less chance of spoilage and disease. But w/modern refrig'n methods, we can get food - and fish - from all over the world.
I like:
-fresh shelled peas
-green beans
-corn on the cob (after it's cooked, remove & slice off corn)
Stir frequently making sure bottom doesn't stick.
During last 10 minutes add your fish. We don't wanna overcook the fish.
-scallops (after cooking, cut into bite-sized pieces with scissors or knife)
-salmon or your favorite fish or your fish on sale
Seasoning: A few shakes of cinnamon is delicious. I learned about cinnamon from Giselle Guerrero, who contrary to her married name, is from Lebanon, as is my kidney doctor.
Since I have bad kidneys I don't use salt tho your guests might like some. Fresh basil or parsley is a nice flavoring.
Ready, slurp!
FISH CHOWDER
Make friends with the Fish Department folks at your grocery store. Ask about where the fish comes from. I buy fish on sale. Or is it on sail. They all take turns. I buy scallops by the number. "Five large scallops please."
In huge pot, braise your veggies in olive oil and butter. Our bodies do need some fat, ya know.
-carrots
-celery - I've just rediscovered celery and munch on it while cooking. In my youth I'd drink wine. Not a good idea. I'd need a nap after that.
- onions, of course!
- red peppers (they add vibrant color)
- mushrooms, wipe w/a wet cloth. Don't soak them or they'll become spongey.
When nicely browned and the aroma is overpoweringly delicious, add your CHICKEN STOCK. I use a low-sodium boxed brand from Nature's Promise. Rinse out the box with water and pour in pot.
Next we're gonna factor in ingredients according to their cooking time. Since this is a meal-in-one, we wanna get our starch in there. Remember, a meal consists of protein-starch-and carbs.
-Brown rice. Why brown? Because white rice is de-natured. The germ is removed as is the endosperm. Let's keep our grains intact, folks. None of this 'whites only stuff.' There are laws now, aren't there?
Add your FRESH VEGGIES as available at the market. Remember the macrobiotic-diet fads? I never subscribed but do remember you were only allowed to eat locally grown food which probly made sense, less chance of spoilage and disease. But w/modern refrig'n methods, we can get food - and fish - from all over the world.
I like:
-fresh shelled peas
-green beans
-corn on the cob (after it's cooked, remove & slice off corn)
Stir frequently making sure bottom doesn't stick.
During last 10 minutes add your fish. We don't wanna overcook the fish.
-scallops (after cooking, cut into bite-sized pieces with scissors or knife)
-salmon or your favorite fish or your fish on sale
Seasoning: A few shakes of cinnamon is delicious. I learned about cinnamon from Giselle Guerrero, who contrary to her married name, is from Lebanon, as is my kidney doctor.
Since I have bad kidneys I don't use salt tho your guests might like some. Fresh basil or parsley is a nice flavoring.
Ready, slurp!
Tuesday, October 27, 2009
His response came at twilight when the deer come in
Pardon me for eating while blogging but I get so darn hungry. The chicken is marvelous, juicy and flavorful. Ada told me they were having rotisserie chicken last nite so when I was in the supermarket today I bought some thighs. I baked it with fresh basil, carrots, mushrooms, and my raw egg & olive oil dressing. I was too lazy to add garlic. I was speaking on my hands-free phone to a former client of mine whom we'll call Andrea who calls me from time to time.
"Get thee to a new psychiatrist," I told her. She's been doctoring w/this one fellow for an entire year. She's substantially better but he doesn't seem to know how to medicate her. She's never been on Lamictal which is an obvious first choice for a woman who can't get out of bed in the morning.
I gave her Waldfogel's name, my current favorite.
When it comes to poets, my absolute favorite that I know personally, tho not well, is Christopher Bursk. Simply typing up his name conjures up my first meeting with the man maybe ten years ago when I worked as a therapist at Bristol-Bensalem. He came to meet me at The Atrium where I had this huge office, really the conference room, cuz they didn't know where to put me.
I was superstitious and refused to put up any nice decorations in my office cuz every time I did that, they'd move me to a new office, so I adorned the walls with old calendars. They simply hung on the wall, all these beautiful scenes, including a B&W calendar of Ansel Adams views. One day one of my clients discovered a trick I did with the calendars.
My job was to give a preliminary diagnosis before the psychiatrist saw them. There were so many codes. Instead of looking in my DSM-IV, I looked up at my calendars where in bold black Magic Marker I listed the most popular codes w/o their names. The only one I remember was - oops! - can't remember it. One of my clients discovered this and we laughed about it.
So there in the waiting room is Chris Bursk - ah, his long lean figure is towering in front of me right now - wearing that same long-sleeve thermal undershirt he wore when I met him. He was as confident & loose-limbed as a racehorse and I thought, Hmmmm, what a great new janitor we've hired. Of course, he was a professor at Bucks County College and a wonderful poet.
He returned to me a sheaf of poems I'd mailed him. Over the phone, he'd asked me how many poems I'd wrin. He wanted all of them. I lied and said I'd only written about 20 cuz I was too lazy to print out all 75 or so of em.
His writing was cryptic but I understood the STARS and EXCLAMATION POINTS he wrote on my papers.
Only yesterday, when a fellow poet mailed me a study showing that Verse Broadens Our Minds, I forwarded it to some poets I know including Bursk. He thanked me for it last nite and I took the liberty of emailing my latest poem 1921: Birth of a Son.
My heart pitter-pattered when he wrote me back just now. Here's what he wrote:
wow!!!!
powerful poem!
thanks for sharing it
Chris Bursk
WHEW! I passed muster.
A day or so ago I was driving down my street. If I could be known for anything in the world, I thought, it would be as a Poet.
Last nite I had a sensual experience in bed but I couldn't find any paper to write about it. I'll try to write about it to read at our Bonfire Friday nite. If no one likes it, I'll..........
"Get thee to a new psychiatrist," I told her. She's been doctoring w/this one fellow for an entire year. She's substantially better but he doesn't seem to know how to medicate her. She's never been on Lamictal which is an obvious first choice for a woman who can't get out of bed in the morning.
I gave her Waldfogel's name, my current favorite.
When it comes to poets, my absolute favorite that I know personally, tho not well, is Christopher Bursk. Simply typing up his name conjures up my first meeting with the man maybe ten years ago when I worked as a therapist at Bristol-Bensalem. He came to meet me at The Atrium where I had this huge office, really the conference room, cuz they didn't know where to put me.
I was superstitious and refused to put up any nice decorations in my office cuz every time I did that, they'd move me to a new office, so I adorned the walls with old calendars. They simply hung on the wall, all these beautiful scenes, including a B&W calendar of Ansel Adams views. One day one of my clients discovered a trick I did with the calendars.
My job was to give a preliminary diagnosis before the psychiatrist saw them. There were so many codes. Instead of looking in my DSM-IV, I looked up at my calendars where in bold black Magic Marker I listed the most popular codes w/o their names. The only one I remember was - oops! - can't remember it. One of my clients discovered this and we laughed about it.
So there in the waiting room is Chris Bursk - ah, his long lean figure is towering in front of me right now - wearing that same long-sleeve thermal undershirt he wore when I met him. He was as confident & loose-limbed as a racehorse and I thought, Hmmmm, what a great new janitor we've hired. Of course, he was a professor at Bucks County College and a wonderful poet.
He returned to me a sheaf of poems I'd mailed him. Over the phone, he'd asked me how many poems I'd wrin. He wanted all of them. I lied and said I'd only written about 20 cuz I was too lazy to print out all 75 or so of em.
His writing was cryptic but I understood the STARS and EXCLAMATION POINTS he wrote on my papers.
Only yesterday, when a fellow poet mailed me a study showing that Verse Broadens Our Minds, I forwarded it to some poets I know including Bursk. He thanked me for it last nite and I took the liberty of emailing my latest poem 1921: Birth of a Son.
My heart pitter-pattered when he wrote me back just now. Here's what he wrote:
wow!!!!
powerful poem!
thanks for sharing it
Chris Bursk
WHEW! I passed muster.
A day or so ago I was driving down my street. If I could be known for anything in the world, I thought, it would be as a Poet.
Last nite I had a sensual experience in bed but I couldn't find any paper to write about it. I'll try to write about it to read at our Bonfire Friday nite. If no one likes it, I'll..........
New Directions' Supporters Checklist and WorryList
Written by Laurel Hoffmann of New Directions.
You cannot take care of anyone else unless you first take care of yourself. In extreme cases, if you are at risk you must take whatever precautionary steps are needed for your safety. For your support to be effective, you cannot live in fear.
GENERAL INFORMATION
1. Discuss the illness with the loved one. Ask him or her for help in determining how to make things easier. He knows his illness better than anyone else, including the professionals.
2. To help with compliance, put the medicines in trays, sold at drug stores. Color code: Use a clear or white box for AM, a dark box for PM.
3. If the loved one is agreeable, go in with him or her periodically when he sees his professionals. This is especially important on the first visit. When a person is severely ill, it’s also advisable. A diagnosed person may be very nervous during an appointment, and later be unable to remember what the professional may have said. Or he may not completely understand the instructions. It can also be helpful for the professional to have the supporter there as a source of additional, clarifying information. In very sad situations the patient, on his own, may not recognize professional incompetence.
4. Consider writing a history with the patient’s help. Include all medications the patient has taken and is currently taking. This helps both patient and doctor and you, their advocate.
5. If the professional doesn’t return phone calls within a reasonable time frame, consider finding another professional.
6. Many people with or without a mental illness are affected by light. A diagnosed person may become depressed during the fading light of autumn and darkness of winter. The loved one should sleep in the dark to foster production of the mind’s sleep chemicals such as melatonin. During the day they should soak up as much light as possible – blinds up, curtains open.
7. Many diagnosed people are eligible for Medical Assistance and Social Security. Young adults may receive more if still in their twenties, as theirs may be rated on their father’s income. Check it out.
8. That said, do encourage your loved one to participate fully in society as much as possible. Their psychiatrist and therapist should also do the same. People with mental illness are capable of meaningful work and should not be patronized or infantilized by professionals no matter what their diagnosis. Even if on disability, your loved one can still work a certain amount of hours or do volunteer work or take courses. Everyone wants to be a productive member of society.
9. Give the loved one reason to want to live. Praise anything genuine that the loved one does. We all benefit from praise. With support many loved ones can achieve full lives. Others can live fuller, more meaningful lives. Your support makes the difference.
10. Consider taking (1) the 12-week Family-to-Family NAMI education program and/or (2) Edie Mannion's Classes listed on the TEC Family Education website of the Mental Health Assn. Continue to attend New Directions Supporters meetings. See NAMI.org to find the nearest NAMI office.
CRISIS: PREVENTION, INTERVENTION
1. Initial prescribed medications may not work well, and often a series of medicines will be selected by trial and error until the right one or combination of meds are found. It’s not unusual for a patient to take an average of 3-4 meds for mood stabilization.
2. Be aware that drinking alcohol renders the meds ineffective. Your loved one should not drink except on very special occasions.
3. Get confidentiality forms signed when the loved one is stable, so as to have access to information from the professionals when the loved one is in crisis. Having confidentiality forms signed also helps with access to insurance information, making it easier to get financial problems straightened out.
4. For the severely ill loved one, consider getting a power of attorney, a durable power of attorney, and a health directive.
5. Sleep deprivation is often the first sign of an impending breakdown. But even when compliant and with no symptoms, a breakdown may not be preventable. That’s the nature of these cyclical illnesses.
6. If there is a crisis, it’s okay call the local police. Ask for an ambulance. Tell them the person in crisis has a mental illness. Plan ahead. Know where your loved one, in crisis, will receive the best treatment. Familiarize yourself with the best mental hospitals in the area. Ask the Supporters about this.
7. In crisis speak calmly, softly, and slowly so as to prevent upsetting the loved one. Do not get into a car with someone who is manic.
8. What a diagnosed person says in crisis may be very painful to hear. Try to let it go. Remember: it’s the disease talking.
9. Make sure YOU have support. Many supporters get their own counselors.
10. Your Supporters' Group is now led by Murray Weismer. Contact him at Murray@weismer.com or 215-934-7459.
SUICIDE PREVENTION
1. Because the disease is so difficult to bear, people with a diagnosed mental illness are at high risk for suicide. Ask the loved one if he is thinking of suicide. He will probably tell you. If so talk with him about how horrific this would be for all involved. Make sure he understands the impact this would cause for all. If in fact suicide is attempted, remember: it is the fault of the disease, no matter what the suicide note may say.
2. Teens tend to be impulsive. Impulsivity is a symptom of mental illness. That is why teens are especially vulnerable for suicide.
3. Make it clear that you care. People with a diagnosis know they present many problems. They are easily convinced everyone would be better off without them. Find a way to genuinely praise the person every single day, both saying “I love you” and showing it in innumerable ways.
4. Do not keep guns or weapons in the house.
5. Not everyone is equipped to be a good supporter but you can learn and you can do it! You and all supporters are VERY SPECIAL PEOPLE. We did not ask for this role in life but we do it out of the goodness of our hearts.
WORRY LIST
SUPPORTERS PROBLEMS & WORRIES
Worries:
1. Worry that the loved one will relapse.
2. Worry about money to pay if there is a relapse.
3. Expectations are now lower – disappointment.
4. Worry about finances in general.
5. Siblings worry that they might get it.
6. Concern or fear that the diagnosed member will become angry with, and blame the caretaker. No matter what, it is not your fault your loved one is ill.
7. Family concerned that another member may go off the deep-end next.
8. Loved one may be concerned that family might put her in a home.
9. Hard for the family or principal caretaker to help loved one emotionally.
10.Sibling may be concerned that he will become the caregiver.
11.Primary caretaker may worry that financial support and repeated bailing out of the diagnosed member may become a serious drain on caretaker’s own finances and limited energies.
PROBLEMS:
1. Loss of extended family who don’t want their children with the diagnosed family member.
2. Reactions of other parent – Non-supportive in some situations.
3. Overload with dealing with mental illness of loved one.
4. Diagnosed member blaming the mother.
5. Self-destruction aspect: e.g. Drinking, car accident
6. Shocking or humiliating aspects of diagnosed child’s behavior
7. The diagnosed person’s appraisal of her situation as compared with a healthy sibling or friend. Feeling left out of normal joys of life because of illness.
8. Emotional problems of diagnosed loved one.
9. Difficulty lowering the bar of expectations.
10. Depression of diagnosed family member with what he didn’t get or didn’t do in his life.
11. Need to be there for the others.
12. Other parent’s worries.
13. Physical stress from taking care of diagnosed members.
14. Various family members adversely affected.
15. Loss for the diagnosed
16. Having to repeatedly bail out their diagnosed family member in numerous situations including from jail, in money matters, at mental hospital, in making bad decisions.
ACTIVITIES THAT HELP:
1. Need a life of one’s own.
2. Helping others helps you.
3. Getting out with friends. Having confidence to leave the loved one home alone when it is safe to do so. Never leave home if a loved one is acutely suicidal. This is when they 'try it.'
4. Getting the house into reasonable condition.
5. Interaction with others in same situation – finding out that others are in worse situations.
6. Taking charge of situations to protect other family members.
7. Staying close with family members who are supportive.
8. Helping others in worse situations.
9. Work
10.Get involved outside the home.
11. Murray says: Have loved one take at least 4 grams of good quality fish oil. Very recent research shows significant benefits for both Depression and Bipolar. Many psychiatrist now suggest it.(Disclaimer: Check with your doctor before adding any supplements.)
REAL ADVICE:
1. Lower your expectations
2. Look for something worse.
3. Get a good disability lawyer early on and find out about social security.
4. No denial.
5. If your loved one is a drug addict let them know this is unacceptable. Attend Nar-Anon meetings for families of substance abusers.
6. Maintain a positive attitude which hopefully will rub off on the loved one.
You cannot take care of anyone else unless you first take care of yourself. In extreme cases, if you are at risk you must take whatever precautionary steps are needed for your safety. For your support to be effective, you cannot live in fear.
GENERAL INFORMATION
1. Discuss the illness with the loved one. Ask him or her for help in determining how to make things easier. He knows his illness better than anyone else, including the professionals.
2. To help with compliance, put the medicines in trays, sold at drug stores. Color code: Use a clear or white box for AM, a dark box for PM.
3. If the loved one is agreeable, go in with him or her periodically when he sees his professionals. This is especially important on the first visit. When a person is severely ill, it’s also advisable. A diagnosed person may be very nervous during an appointment, and later be unable to remember what the professional may have said. Or he may not completely understand the instructions. It can also be helpful for the professional to have the supporter there as a source of additional, clarifying information. In very sad situations the patient, on his own, may not recognize professional incompetence.
4. Consider writing a history with the patient’s help. Include all medications the patient has taken and is currently taking. This helps both patient and doctor and you, their advocate.
5. If the professional doesn’t return phone calls within a reasonable time frame, consider finding another professional.
6. Many people with or without a mental illness are affected by light. A diagnosed person may become depressed during the fading light of autumn and darkness of winter. The loved one should sleep in the dark to foster production of the mind’s sleep chemicals such as melatonin. During the day they should soak up as much light as possible – blinds up, curtains open.
7. Many diagnosed people are eligible for Medical Assistance and Social Security. Young adults may receive more if still in their twenties, as theirs may be rated on their father’s income. Check it out.
8. That said, do encourage your loved one to participate fully in society as much as possible. Their psychiatrist and therapist should also do the same. People with mental illness are capable of meaningful work and should not be patronized or infantilized by professionals no matter what their diagnosis. Even if on disability, your loved one can still work a certain amount of hours or do volunteer work or take courses. Everyone wants to be a productive member of society.
9. Give the loved one reason to want to live. Praise anything genuine that the loved one does. We all benefit from praise. With support many loved ones can achieve full lives. Others can live fuller, more meaningful lives. Your support makes the difference.
10. Consider taking (1) the 12-week Family-to-Family NAMI education program and/or (2) Edie Mannion's Classes listed on the TEC Family Education website of the Mental Health Assn. Continue to attend New Directions Supporters meetings. See NAMI.org to find the nearest NAMI office.
CRISIS: PREVENTION, INTERVENTION
1. Initial prescribed medications may not work well, and often a series of medicines will be selected by trial and error until the right one or combination of meds are found. It’s not unusual for a patient to take an average of 3-4 meds for mood stabilization.
2. Be aware that drinking alcohol renders the meds ineffective. Your loved one should not drink except on very special occasions.
3. Get confidentiality forms signed when the loved one is stable, so as to have access to information from the professionals when the loved one is in crisis. Having confidentiality forms signed also helps with access to insurance information, making it easier to get financial problems straightened out.
4. For the severely ill loved one, consider getting a power of attorney, a durable power of attorney, and a health directive.
5. Sleep deprivation is often the first sign of an impending breakdown. But even when compliant and with no symptoms, a breakdown may not be preventable. That’s the nature of these cyclical illnesses.
6. If there is a crisis, it’s okay call the local police. Ask for an ambulance. Tell them the person in crisis has a mental illness. Plan ahead. Know where your loved one, in crisis, will receive the best treatment. Familiarize yourself with the best mental hospitals in the area. Ask the Supporters about this.
7. In crisis speak calmly, softly, and slowly so as to prevent upsetting the loved one. Do not get into a car with someone who is manic.
8. What a diagnosed person says in crisis may be very painful to hear. Try to let it go. Remember: it’s the disease talking.
9. Make sure YOU have support. Many supporters get their own counselors.
10. Your Supporters' Group is now led by Murray Weismer. Contact him at Murray@weismer.com or 215-934-7459.
SUICIDE PREVENTION
1. Because the disease is so difficult to bear, people with a diagnosed mental illness are at high risk for suicide. Ask the loved one if he is thinking of suicide. He will probably tell you. If so talk with him about how horrific this would be for all involved. Make sure he understands the impact this would cause for all. If in fact suicide is attempted, remember: it is the fault of the disease, no matter what the suicide note may say.
2. Teens tend to be impulsive. Impulsivity is a symptom of mental illness. That is why teens are especially vulnerable for suicide.
3. Make it clear that you care. People with a diagnosis know they present many problems. They are easily convinced everyone would be better off without them. Find a way to genuinely praise the person every single day, both saying “I love you” and showing it in innumerable ways.
4. Do not keep guns or weapons in the house.
5. Not everyone is equipped to be a good supporter but you can learn and you can do it! You and all supporters are VERY SPECIAL PEOPLE. We did not ask for this role in life but we do it out of the goodness of our hearts.
WORRY LIST
SUPPORTERS PROBLEMS & WORRIES
Worries:
1. Worry that the loved one will relapse.
2. Worry about money to pay if there is a relapse.
3. Expectations are now lower – disappointment.
4. Worry about finances in general.
5. Siblings worry that they might get it.
6. Concern or fear that the diagnosed member will become angry with, and blame the caretaker. No matter what, it is not your fault your loved one is ill.
7. Family concerned that another member may go off the deep-end next.
8. Loved one may be concerned that family might put her in a home.
9. Hard for the family or principal caretaker to help loved one emotionally.
10.Sibling may be concerned that he will become the caregiver.
11.Primary caretaker may worry that financial support and repeated bailing out of the diagnosed member may become a serious drain on caretaker’s own finances and limited energies.
PROBLEMS:
1. Loss of extended family who don’t want their children with the diagnosed family member.
2. Reactions of other parent – Non-supportive in some situations.
3. Overload with dealing with mental illness of loved one.
4. Diagnosed member blaming the mother.
5. Self-destruction aspect: e.g. Drinking, car accident
6. Shocking or humiliating aspects of diagnosed child’s behavior
7. The diagnosed person’s appraisal of her situation as compared with a healthy sibling or friend. Feeling left out of normal joys of life because of illness.
8. Emotional problems of diagnosed loved one.
9. Difficulty lowering the bar of expectations.
10. Depression of diagnosed family member with what he didn’t get or didn’t do in his life.
11. Need to be there for the others.
12. Other parent’s worries.
13. Physical stress from taking care of diagnosed members.
14. Various family members adversely affected.
15. Loss for the diagnosed
16. Having to repeatedly bail out their diagnosed family member in numerous situations including from jail, in money matters, at mental hospital, in making bad decisions.
ACTIVITIES THAT HELP:
1. Need a life of one’s own.
2. Helping others helps you.
3. Getting out with friends. Having confidence to leave the loved one home alone when it is safe to do so. Never leave home if a loved one is acutely suicidal. This is when they 'try it.'
4. Getting the house into reasonable condition.
5. Interaction with others in same situation – finding out that others are in worse situations.
6. Taking charge of situations to protect other family members.
7. Staying close with family members who are supportive.
8. Helping others in worse situations.
9. Work
10.Get involved outside the home.
11. Murray says: Have loved one take at least 4 grams of good quality fish oil. Very recent research shows significant benefits for both Depression and Bipolar. Many psychiatrist now suggest it.(Disclaimer: Check with your doctor before adding any supplements.)
REAL ADVICE:
1. Lower your expectations
2. Look for something worse.
3. Get a good disability lawyer early on and find out about social security.
4. No denial.
5. If your loved one is a drug addict let them know this is unacceptable. Attend Nar-Anon meetings for families of substance abusers.
6. Maintain a positive attitude which hopefully will rub off on the loved one.
Beautiful season, beautiful minds
That's the title I gave my latest article that appeared in last Sunday's Intelligencer newspaper, based in Doylestown, PA. Usually the editor picks his own title, based on space considerations, but he stuck with mine. Read the entire 900-word piece here.
Here's what's been keeping me busy since last we spoke:
- my kids n I went to my new kidney doc - let's see if i can spell nephrologist correctly w/o getting those horrible red wiggly lines of spelcheck - well, i flunked, seems like i spelt it wrong. sorry, microsoft, you big monopolist you! (actually during this post Dr Ghantous just called w/my latest test results. my GFR is 'acceptable' he said. these docs don't use superlatives cuz these are progressive diseases. i'll need dialysis or a transplant as soon as 6 mos to a year and definitely before 5. i've written it all down on the back of a huge brown envelope. as you can see i've come to accept this.)
- am getting ready for my mediterranean cruise the first 2 weeks of novembre. forced myself to go clothes shopping. you know, of course, i only shop at the most exclusive shops here in the delaware valley so after careful consideration i walked thru the doors of what used to be santerian's dept store in hatboro which is now impact thrift. why buy new when you can have somebody else's germs? i went on a nonmanic buying spree and am currently sitting here in my gorgeous fake-velvet purple zip-down shirt.
helene liked it so much when i went to her house to get my pants hemmed that she tried to bargain it off me. i told her and her hubby they MUST go see the Coen Brothers latest film A Serious Man. She called me the next day to say it was a work of genius and that she cried and laffed her way through. I'd seen it w/my friend Pam the psychiatrist after we'd eaten sushi at Ooka in Willow Grove. Scott will not eat sushi but when i told him raw fish is the consistently of lox, as in bagels n lox, he said he'd give it a try.
- had the kids over for my delicious fish chowder. thank god they liked it. they were worried cuz dan called in advance to ask about the ingredients. i also presented him w/his new bowknife which is particularly effective in cutting thin slices of homemade bread, lemon, limes and of course fingers.
- scott and i watched auto-focus which i ordered inter-library loan, the true story of bob crane of hogan's heroes who was brutally murdered (is there any other kind? who was gently murdered?) i thoroughly enjoyed this sex-blasted film made by paul schrader who was raised by strict calvinists and punished when bad by his mom who would stick pins in his hand.
my interest in hogan's stems from my client 'evelyn' who loves nothing more than to sit in her raggedy easy chair and watch some of the 138 episodes of hogan with me or all by herself. her fee to see me is being paid by an 89-yr-old relative who i'm trying to convince to put evelyn in a community home. she pays $10,000/year for evie to eat at area restaurants.
- i finally found a book i could sink my teeth into. it's by ann lamott. people in my online writing group had raved about her. it wasn't until sarah told me to read her 'how-to' on writing that i went to find her in the stacks of our library. i can't remember the title of the book but it's fantastic - about her conversion to christianity and her love of jesus. it's very moving.
i'd given up my search for god and concluded the universe was created exclusively by amino acids but my ongoing quest to find god will never be complete.
Here's what's been keeping me busy since last we spoke:
- my kids n I went to my new kidney doc - let's see if i can spell nephrologist correctly w/o getting those horrible red wiggly lines of spelcheck - well, i flunked, seems like i spelt it wrong. sorry, microsoft, you big monopolist you! (actually during this post Dr Ghantous just called w/my latest test results. my GFR is 'acceptable' he said. these docs don't use superlatives cuz these are progressive diseases. i'll need dialysis or a transplant as soon as 6 mos to a year and definitely before 5. i've written it all down on the back of a huge brown envelope. as you can see i've come to accept this.)
- am getting ready for my mediterranean cruise the first 2 weeks of novembre. forced myself to go clothes shopping. you know, of course, i only shop at the most exclusive shops here in the delaware valley so after careful consideration i walked thru the doors of what used to be santerian's dept store in hatboro which is now impact thrift. why buy new when you can have somebody else's germs? i went on a nonmanic buying spree and am currently sitting here in my gorgeous fake-velvet purple zip-down shirt.
helene liked it so much when i went to her house to get my pants hemmed that she tried to bargain it off me. i told her and her hubby they MUST go see the Coen Brothers latest film A Serious Man. She called me the next day to say it was a work of genius and that she cried and laffed her way through. I'd seen it w/my friend Pam the psychiatrist after we'd eaten sushi at Ooka in Willow Grove. Scott will not eat sushi but when i told him raw fish is the consistently of lox, as in bagels n lox, he said he'd give it a try.
- had the kids over for my delicious fish chowder. thank god they liked it. they were worried cuz dan called in advance to ask about the ingredients. i also presented him w/his new bowknife which is particularly effective in cutting thin slices of homemade bread, lemon, limes and of course fingers.
- scott and i watched auto-focus which i ordered inter-library loan, the true story of bob crane of hogan's heroes who was brutally murdered (is there any other kind? who was gently murdered?) i thoroughly enjoyed this sex-blasted film made by paul schrader who was raised by strict calvinists and punished when bad by his mom who would stick pins in his hand.
my interest in hogan's stems from my client 'evelyn' who loves nothing more than to sit in her raggedy easy chair and watch some of the 138 episodes of hogan with me or all by herself. her fee to see me is being paid by an 89-yr-old relative who i'm trying to convince to put evelyn in a community home. she pays $10,000/year for evie to eat at area restaurants.
- i finally found a book i could sink my teeth into. it's by ann lamott. people in my online writing group had raved about her. it wasn't until sarah told me to read her 'how-to' on writing that i went to find her in the stacks of our library. i can't remember the title of the book but it's fantastic - about her conversion to christianity and her love of jesus. it's very moving.
i'd given up my search for god and concluded the universe was created exclusively by amino acids but my ongoing quest to find god will never be complete.
Friday, October 23, 2009
Her sudden and sodden illness
My well-read daughter Sarah told me about the author of Seabiscuit: An American Legend, composed while Anne Hillenbrand, was sick unto death with chronic fatigue syndrome. Hillenbrand no doubt has one of the worst cases ever documented. Despite this she managed to compose her masterpiece about the racehorse whose tragedies finally resulted in racing victories. Likewise, Hillenbrand triumphed over an illness that kept her bedridden and still does. There is no known cure from this virus, from which pianist Keith Jarrett also suffered. Recently, a persistent female scientist found the viral origins for this disease which doctors tell patients is "all in your head."
To read Hillenbrand's 12-page personal account of her illness, click here.
To read Hillenbrand's 12-page personal account of her illness, click here.
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