This is a copy of the National Alliance of Mental Health newsletter. They are an advocacy group for Mental Health. I’m skeptical anytime our government is focusing on Mental Health. I feel like we get swept under the carpet. Last night the Senate passed HR 4302. Last week the US House signed the bill. The bill is now waiting for Obama’s signature.  Improving services for the mentally ill will slow the number of people falling thru the cracks. Many bills we hear the whistle blow and they disappear in to huge stacks of other bills. I write this as a person with Mental Illness nothing more. NAMI offers useful information on website and do a good job of keeping people up on the progress of bills.

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Medicare Physician Payment Bill Includes Two Mental Health Provisions

Last night, the U.S. Senate passed HR 4302, the Medicare Sustainable Growth Rate (SGR) extension. The bill passed the U.S. House of Representatives last week and now goes to President Obama for his signature. HR 4302 includes two provisions that are relevant to people living with mental illness and their families.

First, the bill includes the Excellence in Mental Health Act demonstration project. This eight (8) state pilot is critical to modernizing publicly funded mental health services to align with evidence-based practices and to streamline Medicaid funding. The eight states selected will receive planning grants and Medicaid funding to provide comprehensive community-based mental health services and supports, including integrated mental health and primary care treatment. Community mental health programs participating in this program will be required to provide a broad range of services, including 24-hour mobile crisis teams, crisis stabilization services, outpatient mental health and substance use services, peer and family supports, and intensive, community-based services for veterans.

Second, HR 4302 includes authority for the U.S. Department of Health and Human Services (HHS) to undertake a new pilot program for states to establish and expand “Assisted Outpatient Treatment” (AOT) programs. This program applies to individuals living with serious mental illness who are not participating in treatment and experience serious adverse consequences such as repeated hospitalizations, homelessness or incarceration. States that choose to apply for funding appropriated for this program will be required to gather outcomes data on the effectiveness of the program, including its impact on reducing negative outcomes.

HR 4302 can be accessed here. The Excellence in Mental Health Act demonstration project can be found in Section 223 and the Assisted Outpatient Treatment demonstration program in Section 224.

 

My father suffered from Mental Illness his entire life. When he was a teen, Doctor’s told my grandmother he was hyperactive and gave her tranquilizers. I doubt he took one pill. Estranged since I was thirteen years old, I could not look my abuser in the eye. Daddy started calling when I was 28 years old. He was delusional, talking in sentences that made no sense. I picked up he needed money, I started paying his bills. He said he was going to kill himself and kept rambling. I could not get through to him. I did not tell anyone in my family either.  He was so far gone, he could not process what I was saying.

February 22, 1992 my father took his life. I felt overwhelming guilt. Unsure how my grandmother would react for me not telling her. It’s a guilt I’ll carry to my grave. At 28 years old it was hard to feel pain and remember the past. In the note he asked me to handle arrangements. I did what I’d done for years, stuff my emotions down, act strong and get it done. There are many who inherit Mental Illness, have a relative who suffers or experienced suicide in the family who suffer in silence. Healing from child abuse is difficult, it can feel impossible when the abuser is a parent. I never told my grandparents about my father sexually abusing me.

Everyday is one step in forward motion. I was Diagnosed with Bipolar Disorder at 19 years old. I’ve mostly healed since my father’s death. I forgave him long ago. I hope you can take the first step and reach for support. There is light at the end of the tunnel.

Melinda

Each day was a roller coaster of how he felt and how exhausted I was. I learned so much being a caregiver to my grandmother and grandfather. As the population ages, many of you will take on the responsibility. One of the most difficult changes was going from granddaughter to caregiver. Even at 92 my grandfather had a strong mind and felt he didn’t need help. I pray for strength every day.

My grandfather died in 2010 at the young age of 92 years old. I spent more time with him in 2010 year than I spent at home. I cherish the time we had together, no matter how painful. They are my memories and my life changed forever with his death. His health declined so fast that for two days I did not realize that he was dying now, not in a couple of weeks. He was at home under hospice care and would not get in the hospital bed until two days before he passed. He fell out of bed that morning, he was so weak it was difficult for me to get him back in bed. I don’t think we would have been able to talk him into moving to the hospital bed if he had not fallen. For him the bed meant death and he was still fighting. My grandfather had End Stage Kidney Disease. An emergency trip to the hospital for his AFIB is how we learned he had about two months to live. We knew his kidneys were losing function but I was not ready for a timeline. His doctor had not given me that impression on a recent visit so I asked her to review the hospital records. I was not surprised but very saddened that she agreed with the prognosis. It took a couple weeks for my grandfather to believe the doctors were right. Kidney failure is a silent killer and luckily not a painful one. You start sleeping more until you sleep yourself into a coma.

I arrived on Sunday afternoon after two days of relief and he didn’t look any different. Monday morning I knew he was out of it by the things he was saying but thought it was a bad day. Tuesday I knew he was weak when he fell out of bed and felt like dead weight. It took everything in me to get him back in bed. My grandfather died on Thursday. What the doctors did not tell me is people his age die faster, the end came weeks sooner than we thought. I’m so thankful that my grandfather and I had time together to say what we wanted to say, cry about the loss and enjoy the memories. I have no regrets.

Cleaning out the house was so hard, 46 years of memories were everywhere. My grandmother left notes on everything, it was like mourning her death as I found each note. Notes on the back of photos, on little pieces of paper, and even on masking tape. I knew all the notes were there, we had looked at them many times but it was different this time. Everything was packed up this time and the house cleared out. My grandparents raised me so I’ve lost parents, they were the best you could ever pray for.  The house is empty but I see my life in every room, the great memories with my grandparents are everywhere you look. I am starting a new chapter in my life. It’s a long journey ahead.

Xx   M

Written on 12/21/2009

I’m caring for my 92-year-old grandfather following three surgeries in seven days. I’m so tired it’s numbing, it’s impossible to think about doing it again tomorrow.  My grandfather is a man of habits driven by the time of day, maybe from his military background. One morning he was upset when the hospital had not brought his coffee and could not see he was the problem. We’re in a hospital not the Hilton. At home it was far worse. It does not matter that I have changed the sheets again this morning, changed his soiled underpants more than once and got him dressed for the day. If the coffee is not ready when he expects or I don’t have the newspaper yet, I hear about it. My grandparents raised me and I love my grandfather dearly but it’s hard to bite my tongue. I want to ask doesn’t he realize or care that I’ve been moving since 5:00 a.m. to take care of him.

At 92 he lives at home alone, still drives (very limited), buys groceries and goes to the local Senior Center several times a week to play dominos. He amazes me with each year. He is the healthiest dying person I know and in his mind he is much younger and more capable. This makes it impossible for him to understand recovery will take several more weeks at least. I catch him doing things he shouldn’t and I get the standard “I can do it”.  He also acts like a child when he doesn’t want to do something, most of the time it’s taking his medicine or getting up to move around.

I push him gently but firmly to get up and move around. Laying in bed or sleeping in the chair all day will not improve his strength. Like all of us, he does not like being told what to do. You learn what you’re made of in stressful times. Our mind and bodies can withstand so much to help someone we love. All I know is tomorrow is a new day.

I grew up in this house and it feels strange to stay in my old bedroom at 46. The house built in 1950, is in the hood, has no dishwasher, Internet or privacy. I am going crazy without my Internet escape. I’m in the twilight zone, washing dishes by hand three times a day and the room is the same since leaving home in 1981. Tomorrow is a new day.

Being a caregiver to a dying loved one can leave you drained of emotion, exhausted, and frustrated. All perfectly normal feelings. I felt a quilt mixed in my bowl of emotions. I grew up knowing my grandparents wanted to die at home. I would grant the wish if possible. They inspired me, saved me from parental abuse, and blessed me with unconditional love.

Helping my gramps when making difficult life decisions, while working hard to remember she’s my grandmother. There were uncomfortable conversations, articulate to doctors how she is progressing and butt heads with family members. I ran a tight ship and had no problems telling people it was time to leave, not allowing people over every day. God blessed me with the ability to turn my depression down and step up to the next level. Love for my grandmother drove my decisions down to the last morphine stick.

As our population ages the number of caregivers increases. It can seem overwhelming at times. If you don’t have a blog I would suggest checking out, it gave me an outlet. Caregivers choose to open their hearts to emotional and physical challenges. 

Dementia-Induced Thoughts Of Suicide

Today I used one of four “in case of emergency” pills to keep my Grandmother from hurting herself during a dementia-related meltdown brought on by my Gramps going to the grocery store. She’s had many of these episodes since her stroke almost two years ago. Today I saw the beginning of the end in her face. As I look at the three pills in the bottle, I try to accept that we will need to “ease” the trauma more times before her memory is gone.

Her stroke caused dementia, and at 84 she continues to slide downhill. The meds do a good job of controlling the anger and aggression but on days like today, nothing short of a miracle works. Yet we have never reached for “the emergency” stash and this sinks in as I watch her doze off from the effects.

Today she did not recognize her own home and thought my gramps abandoned her in somebody else’s house while going to the grocery store. She became enraged and very self-destructive by hitting herself in the head while saying that she would rather be dead than left “here” by herself. I tried to calm her as I always do but today nothing worked. I tried to get her to focus on what I was saying but it was too late, she was lost in her painful reality. It was a very hard choice but a drug-induced calm over self-inflicted harm is the right thing to do.

While waiting for the drug to work I showed her photos of her and my grandfather from 24 years ago, a photo of my father on a pony when he was a child, and many others I took off the walls to see if she could connect to anything. She recognized my dad but several other family members were a blur. It was so painful to watch her lose touch, it ripped my heart out.

The Psychiatrist gave us four Xanax pills which were for emergency if she got violent.

Granny had another stroke and is in the hospital again. Late in the night she was sound asleep so  Gramps went home to try to nap and she got upset that he was not there. It took six of us to hold down an 82-year-old who barely weighed 100 lbs. Her aggression reached a point where she needed restraining. Her arms tied to the bed yet she managed to fight. I used all of my weight to hold her down to the bed, yelling at the nurse where the hell was a shot to knock her out. The nurse did not articulate to the doctor the urgency of the situation so he did not approve a sedative. I told her if she could not articulate the need, pass the phone to me. I would get the message across.  The doctor ordered a sedative.

Watching her lose touch with reality is like seeing your child get hit by a car in slow motion and not being able to get a word out. I’m thankful for the time we spent together no matter how painful. I focus on the good moments and do not hold on to difficult days like this.

M