Wednesday, October 24, 2012
Tomorrow is parent recognition night at Jack's final game. He wants his dad there. It seems like a simple thing to do, but I am truly dumbfounded on how to accomplish it. Last Sunday when I took Bill to mom's, it ended in agitation and altercation. The daily phone calls since have been tense. Bill is once again frustrated that people perceive him as having Alzheimer's. He is in another state of denial and anger. The game is of course a night game. The recognition is at half time. Sundowners begins to hit as early as 4. Can I do this? What if he decides he is going to drive? Acts out? Elopes? Strikes out at me? How can anyone sound so normal, look so normal, and be so unpredictable?
Google 'caregiver burnout' and see what you find...you will find a great deal of sites that want you to 'take care of yourself, rest up and find the time to gather the strength to carry on' Big deal. What about the sites that show how angry you are? What about all those sites that tell you that it's ok to fight and yell and scream and hate your life because everyone around you talks about how great theirs is??? There are a million advice sites that tell you to go take a walk, go get some retails therapy and basically tell you up the wazoo to 'take time for yourself' but what about the sites where you can write about how really miserable you are? The sites about how no matter how much you've done for the person you got stuck caring for that they still tell you that you don't do anything for them, that you are completely selfish and a terrible person for thinking about no one but yourself? Show me the websites that say it's OK to wish the person you're caring for would die because you see no other way out of this life. Where are the sites that say it's ok if you really wanna scream at the person you're caring for about how fucking LUCKY they are to have you there? Show me those. There are a million sites that say, breathe and find your inner strength to carry on but what if you have none left? Show me a site that tells me 1. Not to feel guilty 2. One that tells me it’s ok to think about MYSELF for a change 3. One that doesn't tell me what a saint I am for doing this...and 4. How do I end the constant serial symptoms of still trying to please everyone? Gosh, it is gut wrenching when I see it in black and white.
I recently had a friend whose husband has a traumatic brain injury and is going through similar dilemmas tell me she has cancer. She hopes it is terminal because she can’t take the pain any longer. Her life has been hard, and she is ready to die. I understand people who have suicidal thoughts. . It's a constant struggle between wanting to live and wanting to die. For some, life is a prison. What do you say when someone tells you that? The advice of a therapist is, "If you have suicide thoughts, please call 911 and tell them to take you to the hospital ER. Explain to ER the situation, and they will help you. Please call 911." Yeah, that helps. I don’t think so. We spend all this time helping the person in need that we don’t even know a place for you to START the ball rolling on how to help YOU so you can help those that depend on us.
9/9 I go to the home to eat lunch with Bill and his dad. I am received warmly by Bill and coldly by his father, who won’t even look at me. He makes comments to my mother about “her.” My mother is trying to protect me from my father in law’s criticism and hatefulness. I know now that Bill has never been able to accept my family as his own because his father has the same behavior. Once the most wonderful daughter in law in the world, I am now the reason for Bill’s demise.
9/8/2012 It’s 8 am and I have already received four calls from Bill. When will he get picked up? Why can’t he ride with Jack? Why won’t I answer his calls?
Happy birthday to my Jack. He’s 18 today. He and his girlfriend (fiance per the two of them) went to the airport to pick up Bill’s dad. The kids relay the trip was “stressful, stressful.” Grandpa decided to use this as an opportunity to tell Jack his dad doesn't have Alzheimer’s and does not belong in a nursing home. We have abandoned Bill. There is nothing wrong with him. Jack was lectured on visiting his father at least once a week; that he ought to be brought home. William took the kids out for lunch, then the crew made their way to the nursing home.
Once at the nursing home, Jack indicated that Bill became agitated almost immediately. He went into a tyrant, shaking his fists at everyone there. William was there and his presence was to be made known.
William gives Jack $100 dollars for his birthday as the kids leave to go to the fair. Here, take this. It’s probably the last time you’ll see me.
Bill calls. “Jack needs to get his ass back here, now. He took the car and he and his wife took the money.” Dad has no more money. He’s 87 and can’t take the heat. They need that car now. Jack left and abandoned them. I explain to Bill that Jack has gone to the fair, that he invited his grandfather to go, but his grandfather declined. His dad has no car because his dad opted not to get a rental car while he is here. Jack is driving our car, and we cannot leave a vehicle there for them.
The nursing home calls at 8:30 pm. Bill refuses to leave his father and the cottage to go back to his room for the night. He is raising fists, becoming physically aggressive, yelling threats. The nurse is obviously shaken. He did take his sleeping pill. His father checked him out again and took him to the cottage.
At 9:30 the home calls to say Bill came back to his room with no argument.
9/7 Jack calls William to get flight arrangements. William asks Jack to bring Bill to the airport. I explain to Jack that won’t be possible because Jack may not be able to handle his father if he becomes belligerent or demands to drive, etc. I received four phone calls from Bill, each one more agitated than the last.
9/6/2012 Delores called. She says Bill has been calling agitated for the past two weeks. He is demanding that when dad comes to visit on the 8th that he needs to take Bill to buy him a car. She indicates William is beside himself and considered cancelling his plans but he feels it might be the last time he sees his only child. Who told Bill he could stay in the cottage with William? William is so upset. He doesn't think he can handle Bill. I agree, and tell her that Bill has most likely come up with the idea. I contacted the home and request that Bill not be allowed to leave the home with William by car and that he stays in his own room during the visit.
9/3/2012 Jack receives a call from William. He says he is flying in on the 8th to see Bill and Jack. He asks Jack to pick him up at the airport.
9/2/12 They are treating him like a hero now at the nursing home. I feel angry, disgusted. He’s a nicer person now than he ever was to us.
9/4/2012 4:00 Panic hits. My heart starts pounding, louder and louder, my ears start ringing, heat rushes over me. I close my eyes and just stopped breathing.
I think I need to change my energy focus from fear, anger, betrayed, to a more positive energy. How do I want to feel about Bill? I want the fear to be gone. I want the lump that rises up in my throat every single time I think about him to go away. I want to love him out of respect to what I believed marriage to be because it is the right thing to do. Is it the right thing to do? I wish I knew.
5:15 Panic attack hits again. It feels like it is hitting me in waves, very powerful, but billowy, wavy. It lessons after another minute in intensity, but the sensation is here. All I can do is think of self -regulation techniques for pushing the blood pressure back down. I think of myself as a thermostat, and the temperature is rising very high. I can see the red of an old mercury weather thermometer as the sun hits it. I can feel the pressure rise. I push that red bar down, down, down, deep breathing. The panic resides and I feel relief. I close my eyes even as I type to savor the momentary
5:50 Mom just called. I got a letter from Against Violence towards Women. It went to my mother’s house. My heart is once again pounding. It directs me towards funding resources for my cause. Mom is going to scan it send it to me. How do I feel? My grant writing class starts tomorrow. I am totally ecstatic.
I want to make a change. What needs to be changed? What would have helped me when this all started? Time to go back to my original letter sent out such a long time ago (Eight months in two days) and see exactly what I need.
• A place for Bill to stay while his medications were stabilized
• Intervention from the police, hospital, Horizons, Social Worker, Psychiatrist, nursing,
• Training for police, emergency services, Dr., hospital, ER, Sheriff Dept
• Coalition for working with people with mental health (health agency, domestic violence training)
• Supports for: Online and ground services
o Children Support
o Spousal support
o Parent support
• Social Worker
Printed info- Jerry
A Powerhouse for all of us to unite and get the word out there.
8/30/2012 Sleep seems to be avoiding me. I toss and turn as my mind races. I am flooded with memories- short flashbacks. I can’t even pinpoint what is on my mind. The physical reactions are too intense for me to think clearly.
“Mama.” I hear my son call out from downstairs. “Mama. I can’t sleep,” his deep voice calls up to me. Seventeen. A boy in a man’s body. “Mama!” I hear him sobbing as he climbs the stairs. Alarmed, I leap out my bed. What is it? What’s wrong? “Mama. I had a nightmare,” he cries. “I had another fucking nightmare and I can’t sleep.” His fist pounds my mattress as he weeps. “What is it, honey? What did you dream?” I asked as gently as I could. He falls to my bed sobbing, his large body convulsing, creating massive waves across my bed as he cries out in exhaustion. The mattress on my bed trembles and shakes. How fragile my boy is. Such a victim of abuse due to the mental illness my husband has developed. Jack has been the brunt of victimization, of hateful rejection, jealousy, emotional torcher. “What did you dream, honey?”
I watch as my son grimaces in pain, tears falling freely from his heartbroken face. “It was a good dream. You know? One of those good memories. Remember when you, me, dad, and Uncle Al were on the pontoon? Remember the huge waves? We almost sunk the boat. Remember?” He sobs again, lowering his head and burying it in my pillow.
“Remember back when he liked me?” The sobbing, moaning, tears are convulsing from him violently. Like a seizure, he is unable to regain control voluntarily. “Mom, I’m sorry, but I’m having those feelings again. I’m sorry, mom. I just want to die.” I swallow hard, but I am unable to control my thoughts, my own emotions. I begin to sob, hysterically. My life is out of control. I try to keep things under control, I try to provide a foundation of safety, of love, but the past five years or more hang over us like a dark and heavy cloud. “I’m sorry. I’m so sorry. I’m sorry, mama,” my six feet five inches teen cries in my arms. “We’ll make it, mama. We’ll make it. We have each other.”
Wednesday, October 3, 2012
He carries a black three ring notebook for his important papers. He helps residents fight loneliness, he has increased the participation levels in activities with his personal invitations....
...he has actually taught a gentleman with traumatic brain injury to talk and walk again.Lee had been in a coma for many months and when he woke he was isolated in a hospital room for over a year. When he arrived he was barely above a comatose state. Bill began reading to Lee on a daily basis. He shared his music- Pink Floyd, Aerosmith, Beattles... He talked to him, forgetting of course that Lee could not speak back. One day Bill was reading, having Lee follow along. Lee picked up the book and began reading outloud. Within days his verbal skills increased. While there are still many barriers due to his injury, he is communicating again... to the point that he doesn't stop talking, now. **) A couple of days ago a nurse was in his room. He appeared to be trying to stand. "Careful, Lee..." the nurse warned... "you can't walk..." Lee turned, looking directly at the nurse and said, "Wanna bet? Watch me..." and he stood. Bill is and always will be a teacher. His usefulness is not over and the home allows him to shine. He still wants to come home. Hates his hours, he says. Would like to work a normal day like everyone else...still talks about buying a car to drive back and forth- just to work and back, he assures me...
'Today I reflect back on how strong I am. A friend tells me frequently I do not realize my strength. Ok, so I don't know how much credit I can take for it. I ran straight to a coping technique I like to call "Ok, center of my soul, I know you are in there somewhere. Ommmmmm"
Sound. I like sound. I need sound. Singing, humming, chanting. The vibrations are healing. Pushing energy. I am learning to push my negative vibrations out, releasing all my energy to be converted to positive energy. I cleanse my self and then walk that energy out the door, literally, waving my arms in the air and chasing it out all the way. In Michigan it is common for people to smudge. I am using bees wax candles to ease anxiety and depression in the house hold. I felt stronger this time. I knew to ask, to reach, to receive, no matter what form the help comes in.
Jack is cycling but the up and down episodes seem to be fewer and last less time. I remember feeling the extremes in emotion. I remember how painful it is, how it rushes through you like a heat, a wave of moist, painfully heavy and warm weight. It makes me wince, sweat, makes me have to purge it all from my body. When it comes to Jack I ache to be an empath, to take on all his anguish, pain, grief, disappointment. Help is unfolding. Friends have reached out to him, to me, our family. Most people are accepting and supportive to Jack, to me, to Bill, to all of us. Those that are looking off and upset that wrong has been done, I invite you to step in, to help us. Our goal is to keep Bill safe and happy. We try but we get tired and are dealing with our own grief and often we are not enough. Your support is much more well received than your judgment. We do understand this is your grief, also. It still hurts. It's really not ok and I wish you sincerely would visit, reach out to him, be the friends he felt you were. Love him. Let me tell you about the disease, what it has done to him, to us. We are all going to be ok, though, with or without you.
My devotional folded out before me.
I know sometimes you feel like you're never enough.
It's exhausting to feel like you're never perfect enough, thin enough, smart enough, rich enough, successful enough, extraordinary enough...
This kind of scarcity mentality runs rampant in our fear-based world.
But I beg you not to listen to those voices, darling. I'm here to tell you those "never enough" voices come from the Gremlin, not me.
In my eyes, you are enough. Period.
You hold within you a little spark of divinity (moi!) and simply because I live in you, you are worthy.
There is nothing else to prove.
Trust me, baby.
I love you,
Your Inner Pilot Light