Perspective Part 3

Most coal miners that get trapped underground during a collapse normally die of CO2 poisoning. Their lungs don't have clean air to breathe, CO2 will build up in their blood and they go to sleep. Eventually they will die without proper intervention.

My Mother-In-Law has CO2 build up in her blood and carbon monoxide in her lungs. She is a medical miracle, why she hasn't been less alert we may never know. I guess God will decide when to call her home.

Her respiratory problems started 10 years ago with bronchitis that was reoccurring frequently. She was treated with antibiotics several times a year. Four years ago she was put on oxygen but she didn't need it all the time.

Three years ago she had a heart attack. It was so bad the hospital was surprised she even made it there. The hospital attempted to do a catheterization but found an aneurysm on top of her heart and life flighted her to a larger hospital better equipped to deal with the aneurysm. The larger hospital tried twice before they were successful. She developed pneumonia during this time and during her checkup a dark spot was seen on her lung. We now know that spot is cancer. Her lung function is very limited and only partially does the job it's supposed to thus the CO2.

She made her choice to decline further intervention such as being put on a ventilator. That is her right to do so, I would do the same thing. Know your rights and let your family know what you want. It's your body and life. Put it in writing so there's no confusion when the time comes.

Perspective part 2

Accepting a close family is terminally ill has been very difficult. She wants to live but in all honesty the odds are stacked against her. Her heart is weak with some blockages but she has an aneurysm that sits on top of her heart that prevents a catheterization or putting in stents. Her lungs are weak and are no longer able to function properly, she has poisonous gases building up in her blood. The CO2 if it continues to build will eventually cause her death. Her lungs are too weak to inflate.

As you can tell by reading the previous paragraph my mother-in-laws prognosis is poor. Her condition is terminal. My M-I-L is alert and orientated most of the time. During this last stay in the hospital she has made two important decisions.

1) She appointed my husband's sisters as her Medical Power of Attorney. If some things can be done that does not go against her living will the POA can say yes or no. They act on her behalf if she can't speak up. This is a signed legal document.

2) She set up a Living Will indicating what she wants and doesn't want. She is DNR (do not resuscitate), if she passes away she doesn't want CPR . She does not want a ventilator keeping her alive. Or any machine keeping her alive.

As her family we will make sure her wishes are honored. That her care is compassionate without causing too much suffering.

I know this particular blog is about Euthanasia discussing the option but wanted to mention alternatives to Euthanasia in places where it isn't available. I'm American and live in the Bible Belt. Euthanasia and Physician Assisted Suicide will never be available in my state. Even if it was my Mother-In-Law would never consider it and that should be her right to make not lawmakers.

Euthanasia and Physician Assisted Suicide is available in very few places but living Wills are everywhere. Check to know your medical rights in the state or country  that you live in. Each country has it's own policy regarding medical intervention and what is acceptable. Know your rights and indicate your wishes on legal documents so your not put through un-necessary treated you did not want in the first place.

Living Wills and Power of Attorney can be changed or amended at anytime. Know your rights and speak up while you still can.

Perspective

Yes my confusion is still here but it seems less important. Having a major health crisis in the family does put less important things in perspective. My mother-in-law's health took a decline this week. Is it life threatening? Yes it could be. Hopefully the medical intervention has stopped further decline. Since her EOL (end of life) decisions have been made acceptable treatment is limited. The one thing that could give her more time is a ventilator, she doesn't want that. She doesn't want to be kept alive by artificial means nor does she want brought back if she dies. She made these decisions a long time ago and confirmed her EOL decisions this time. She will be 71 on Halloween

She has approximately 15% lung function and her lungs are no longer able to do their job. She is getting CO2 build up in her blood. She did agree to a bipap (non invasive ventilation) which she wears continuously at night and every 2 hours during the day. When she's not on the bipap she's on 5 litres of oxygen. She also has carbon monoxide building up in her lungs.  The carbon monoxide and CO2 can have devastating consequences.

We honestly don't know from hour to hour what's going on. We just support her and our family any way we can. Last night I quietly sat by her bed listening to her sleep, stroking her hand. My sister-in-law hasn't left her side for almost a week so we brought her a hot meal and a few things she might need . We gave her a small break so she could rest. Family is family. During times like this petty problems seem not important and families come together. My husband and his sister don't always get along but the compassion shown is unmistakable. My sister-in-law is in the process of being diagnosed with MS and stress can be detrimental but she sleeps in a chair at the end of her mom's bed.

My own confusion seems less important and made me realize what is. Family.

ALS, disabled and other bloggers

When I started following certain blogs I knew for a certainty that the blog would eventually end. What I didn't know is how. Would the blogger become too debilitated to continue writing or die? Would the family do the final entry or would the blog become idle? I just didn't know. Reading the entry made by her daughters a few days ago I knew for a fact she had died, I seen her obituary. ALS had stripped away many of her abilities but not all. When I first found her blog and started reading it was because of the mention of DIGNITAS. She decided not to go that route because she would be forced to go too soon. She was losing small abilities here or there but the progression was slow at first. She learned to cope with each new loss with humor and grace. And then the motor neuron disease would accelerate before coming to a plateau. She adjusted with each loss learning new ways to continue living independently. Therapist and carers taught her ways to cope with each loss by learning new ways to do things.

It kind of reminds me of how I had to learn to do things differently after my back injury to prevent further injury. Now when I do things I'm no longer reminded of how far I've come or how I used to do things. I just do it. With therapy I knew my life would improve and I could be more active. But providing therapy for someone with Amyotrophic Lateral Sclerosis made no sense until I started reading blogs especially hers. One of goals of therapy for someone with ALS/MND is dignity and longer independent living. Each new thing taught allows the person to do activities of daily living (ADL) longer. Because of the uncertain nature of ALS the therapies is less aggressive and the goals aren't long term. Or the therapist evaluates the person for Orthotics such a braces or splints, or whatever they need at that time.. Sometimes therapist recommended adjustments to the home to allow longer independent living. PT, OT and ST along with the other members of the health care team are important for anyone facing ALS or any debilitating condition. With ALS the debilitation can be slow or very fast, so the person might be evaluated more often.

Her life didn't end with her diagnosis. She volunteered, painted and drove a car until several months ago. She prepared her own meals until a few months ago. She traveled. She created new memories with her children and grandchildren. The most important she did was give people hope that a shitty diagnosis didn't prematurely end her life. She continued to live, learn and get pleasure from the small things most of us take for granted. She is already missed by me and many others who followed her life with ALS/MND.

Sad News

One of the ALS/MND bloggers I follow recently lost her fight with Motor Neuron Disease, 21 months after diagnosis. I started following her blog early in the diagnosis and witnessed the devastation through the written word. Even after she was given a death sentence she had adventures and continued to live. Life doesn't completely stop with a shitty diagnosis. She continued to paint, took trips and accepted each new challenge as this disease took away abilities. She lived!

She left behind a legacy of strength and hope.

Pulmonary Fibrosis

Have you read another blog and that you totally understand where the blogger is coming from? Last night I read a blog and it hit me in my comfort zone. The blog was talking about one of their immediate family members recent diagnosis and how everyone is pulling together. It almost seems like it was yesterday that my stepmother passed away from the same disease her family member is facing. Pulmonary Fibrosis. The prognosis isn't good if you know someone who's living with it. Our family learned to accept the uninvited disease and face the unknown.

Pulmonary Fibrosis can be considered a terminal illness and is always fatal with a life expectancy of 5 years. We had less than 6 months.

Pulmonary fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs. It is also described as "scarring of the lung".  (Source Wikipedia)

Symptoms

Symptoms of pulmonary fibrosis are mainly:

Shortness of breath, particularly with exertion

Chronic dry, hacking coughing

Fatigue and weakness

Chest discomfort

Loss of appetite and rapid weight loss

Pulmonary fibrosis is suggested by a history of progressive shortness of breath (dyspnea) with exertion.  Sometimes fine inspiratory crackles can be heard at the lung bases on auscultation.  A chest x-ray may or may not be abnormal, but high Resolution CT will frequently demonstrate abnormalities.  (Source Wikipedia)

In 2009 or 2010 everyone began to notice my step mom was losing weight rapidly and starting to experience shortness of breath. Her activity level quickly diminished. She stopped going to town. This was a woman who went to town multiple times a day or drive 70 miles (round trip) for a deep fried pickle. Or 100 miles for beef jerky. Her sudden exhaustion didn't raise too much concern because she was 80, general tiredness should be expected with aging.

As the shortness of breath persisted and continued to get worse testing began in 7/11. In August she was diagnosed with Pulmonary Fibrosis. The prognosis was bad. My dad, niece and stepsister began providing 24 hour care at home.  On 12/14/11 my stepmother was admitted to the hospital to have higher amounts of oxygen administered. She was quickly put on 15 liters. On 12/20 the Dr felt she should be put on a ventilator, she refused. The hospital wanted her to go to a hospice, she refused. She just wanted to go home. The hospital she was in was 50 miles from home.

On 12/21 my family arranged for a squad to bring her home.  Our family realized she might not survive the trip but it's what she wanted. A couple hours before the transport some of the family came in to be there when the extra oxygen tanks were delivered, three tanks were connected. My step sister got her new furniture (she never sat on) and another decorated a tree. The hospice nurse arrived .

During the transport her oxygen had to be decreased. Again we were aware she might not survive the trip. Once the squad arrived and she was being unloaded her eyes brightened up. You could see a radiant smile behind the oxygen mask as she greeted the family with a wave. She was home.

It took an hour or so to get her situated and for quick training for those providing direct care. My family was shown how to give her morphine during the times hospice wasn't there. We thought we would have a few days so I was supposed to go the next morning to be with her.

The hospice nurse gave her morphine and she started burning up. The doors and Windows were opened. My family put on a CD of Dolly Parton singing "precious memories". Her conditioned worsened but she was alert enough to comfort my step niece. She told her not to cry I'm with Jesus now.

She passed away as Dolly was singing "Precious Father, Loving Mother". I'm bawling as I write this.

Perhaps the ambulance ride took away hours or days from the time she had left but it's what she wanted. Maybe the hospice might have gave her a few days but she just wanted to go home. Why deny her that? She felt she took care of her 9 children including me and some of her grandchildren , we should take care of her. My family took good care of her. Did she suffer? Her golden heart stopped beating before she started completely suffocating. In the end it would of felt like trying to breathe with a boulder on her chest. She made a choice to refuse further medical intervention just to go home.

It breaks my heart knowing a family I only know through blogging will take this same journey my family traveled not long ago. I'm praying for them

I follow some ALS blogs

Euthanasia is one of the most controversial issues I follow and because of the majority of the videos I've seen on YouTube about assisted dying had ALS , I decided to learn more about it. Instead of just learning the medical aspects about it most likely written by physicians or scientists, I wanted to know about the human aspect of the disease written by those living with it. Making the decision to live even when given a "death sentence" is not taken lightly. Most look into physician assisted suicide, euthanasia or suicide often setting limits on what they will tolerate after the diagnosis. The majority don't follow through with ending their lives due to family, religious , financial or moral reasons. Sometimes the stopping point , set earlier in the diagnosis, is often ignored. Just reading the medical aspects of ALS would make most people consider suicide. There's been very little research compared to many other diseases and the prognosis is grim. The devastating symptoms of this cruel disease and lack of awareness can push a person over the edge.

Reading about real people living with this horrific disease gives newly diagnosed patients hope because they choose to live. They don't sit around waiting to die, they try to live the rest of their lives to the fullest. They adapt and adjust to each loss with reservation but continue to enjoy life. I think that's why I chose to follow certain people with ALS because they inspired me and continue to do so. Even in their last months quickly disappearing they are making memories with those they will soon leave behind.

As the disease progresses they will eventually have more bad days than good as the unenviable approaches. I've come to care for virtual strangers, and worry when there blogs fall silent. Sadly one of the bloggers I've followed periodically left this life for hopefully a better world in June. He died as a result of ALS and not by his own hand.

Another of the bloggers I follow has gone MIA from online. 17 days and no updates. I'm so worried and hope she is well.

Multiple sclerosis part 2

Please forgive my other post about my S-I-L. I'm not wishing MS on her or hoping she has it. MS can be a devastating disease but considering other conditions it might of been ,I'm glad it's most likely multiple sclerosis. Other conditions that affects the neuromuscular are more devastating and with a much shorter life expectancy. My S-I-L will most likely be able to watch her grandchildren grow up even if she's in a wheelchair. I'm hoping anyways. The debilitation may take years with years between relapse or further disability.

She's been falling for 2-3 years and stopped working recently. With her mom so sick this is more added worry for our family. My mother-in-law is terminal but has not been given that particular label yet.

I'm hoping my M-I-L doesn't deteriorate further from worrying about her children.

Multiple Sclerosis

Accepting some of the recent terminal illnesses and deaths in my family has been difficult but considering their age, they have lived a good life. A long life. Yesterday I was told my sister-in-law most likely has multiple sclerosis. She's 47.

She's had unexplained falls for awhile,painful spasms which resulted in more falls and fractured a vertebrae from the falls. Considering MS is a disease I'm familiar with, I hope it's not something else. Something worse.

We both know the reality of Multiple Sclerosis, we took care of several individuals with MS. My sister-in-law worked in nursing 15+ years, to my 12. I have a spine injury that forced me to leave nursing.

Every diagnostic test is pointing to Multiple Sclerosis and the Dr has told her he wants to do one more test to confirm the diagnosis. But most likely it is MS.  CT scans, &MRI show spots on her brain. Lesions?

My husband has also suffered from unexplained muscle spasms for years. His last Dr prescribed muscle relaxers instead of trying to find out what is causing the spasms. The spasms he has comes on sporadically, and his muscles seize up. Sometimes it takes 45 minutes for the muscles to ease. He always uses the excuse the muscles in his legs are damaged from being electrocuted, which he does have significant damage but the spasms started 15 years after. Sometimes the spasms make him fall to the ground.

Maybe it's time to get him rechecked? Sometimes the unknown diagnosis is more terrifying than knowing.

Like other neuromuscular diseases there is no cure for MS. Symptoms can be treated as they present themselves or after relapses.

" The average life expectancy is 30 years from onset, being 5 to 10 years lower than that of unaffected people. Almost 40% of people with MS reach the seventh decade of life.  Nevertheless, two-thirds of the deaths are directly related to the consequences of the disease.  Suicide is more common, while infections and other complications are especially dangerous for the more disabled. Although most people lose the ability to walk before death, 90% are capable of independent walking at 10 years from onset, and 75% at 15 years" (Wikipedia)

Fighting an Uphill Losing Battle

Last fall I started reading ALS/MND blogs after witnessing the Euthanasia videos Choosing To Die and The Suicide Tourist. There was a few other documentaries but I noticed a theme and perhaps it was unintended. Most of what I seen were people choosing to die that had ALS or MND. Or perhaps the documentaries chose to just show those committing suicide had ALS. Sure there was also Multiple Sclerosis, cancer and PSP (short stay in Switzerland) but the majority shown had ALS/MND.

If you're unfamiliar with ALS do a Google search, even with the generic definition it's scary as hell. The possible devastation and debilitating effects of this disease before someone with ALS dies is surreal. Adding to the hopelessness there is no treatment or cure. Sure there's one medicine prescribed that could extend life for a couple months, months not years.

There is also con-artist who try to sell snake oil or unproven treatments as a possible cure. Realistically even though the con-artists are criminals they do give families hope, hope they might not of had. Some of our modern medications or surgeries happened because of a fluke in research. So when options are limited why not??  The bad thing of improven treatment is it robs someone with ALS of precious time. Time is limited for most people with ALS.

ALS doesn't discriminate on gender, age or race. There is no way to predict who will get it unless the SOD1 gene is present . And unless there is family history of ALS the Drs would not test for that gene. Familial ALS occurs in 5-10% of new diagnosis. There's a mutation in the SOD1 gene located on the 21st chromosome. Over 150 variations of the mutation are documented and in most diagnosis there's no history of FALS (familial Amyotrophic Lateral Sclerosis)

So after I learned more about ALS from the medical standpoint and about Euthanasia, I chose to read blogs about people living with ALS. I follow 2 on a daily basis and 2-3 more monthly. From a medical standpoint it's hopeless but how people deal with the hopelessness varies from person to person. 75-90% of the blogs I've read mentioned suicide at some point. Most of the blogs I read are people choosing to live, adapting to each loss as it occurs with disheartening enthusiasm. Grieving for each new loss but continuing to live with ALS.

One day the blogs will abruptly stop and I may never know if they died or lost the ability to communicate. One of the bloggers I follow may decide to end thing before they are unable to do so but I may never know with certainty.

This is their journey not mine. If they eventually say enough already and take a way out, that's their choice. There should be laws to help them.

Freedom to Live, Freedom to Die

Disclaimer: Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.

I think the interesting about assisted suicide in the states that allow PAS (physician assisted suicide) is people aren't rushing to take the drug when receiving the prescription. Perhaps knowing they have a way out tomorrow if things get too bad allows them to enjoy today. It may give them peace and hope as strange at that seems. It may also give them more time with family and friends.

Realistically traveling to Zurich when you're terminally ill means you have to be well enough to make the trip so many are forced to go earlier than necessary. People in Oregon can stay at home to die in the comfort of their own home.

In 1994 Oregon became the first US State to pass the Death with Dignity act. If you're wondering the impact of Oregon's Death with Dignity Act....

From the act's passage through 2011, a total of 935 people have had prescriptions written and 596 patients have died from ingesting medications prescribed under the act. The average age of the 596 patients who died from ingesting medication was 71, with 80.9 percent of patients suffering from malignant neoplasms (cancer). Of the 596, 51.7% were male (48.3% female); 44.7% had a Baccalaureate degree or higher; 45.7% were married; primary end of life concerns were loss of autonomy (90.9%), inability to make life enjoyable (88.3%), and loss of dignity (82.7%).  (Source Wikipedia)

Considering there is over 3,890,000 residents of Oregon, 596 is not Alot since it became legal. Not quite the slippery slope we all hear about.

What's also remarkable 339 of those prescribed the barbiturates did not take them and passed away on their own. Perhaps knowing they could go made them appreciate each moment they had left?

Amyotrophic Lateral Sclerosis , MND and Dignitas

This blog is my opinion and my opinion only. It is not to encourage assisted Suicide or Euthanasia. Nor am I advocating assisted dying.

Although I think in certain circumstances Physician Assisted Suicide should be more readily available per the patients request, my blog is about choice and what can be done legally.
The reason I've mentioned Amyotrophic Lateral Sclerosis (ALS) or Motor Neuron Disease (MND) in multiple entries is because over half of the assisted Suicides I have seen  on YouTube were people suffering from these devastating illnesses.  I've read multiple ALS and MND blogs and sadly this is a topic that comes up repeatedly at the beginning of the diagnosis.

One of the devastating things about ALS/MND is It's so unpredictable. There is a beginning to the disease with some troublesome symptoms or inconveniences but most assume it might be from a past injury they had or assume it is because of aging.

And then more symptoms present themselves or the person notices they're weaker in certain places on their body. The Drs start running test to rule out other diseases. Sometimes it's months between new symptoms so ALS is not suspected unless the patient had a  biological family member who died from Amyotrophic Lateral Sclerosis. The SOD1 gene is present in some familial ALS.

Because only a small percentage of new diagnosis had family members die of ALS , it's hard to diagnose until a few unrelated symptoms present themselves.  And then starts the process of elimination to make sure it's actually ALS and not another condition. ALS and MS share similar symptoms. Lime disease share some symptoms with ALS and MS and vice versa. Once other diseases are eliminated as possible causes for the symptoms and every test done, a patient is given the diagnosis of ALS.

It must be very difficult for a Dr to give this diagnosis and tell the patient there's No Cure but harder for the patient that receives it. Most will look up ALS/MND to get a general idea what they might face and search for possible cures or new research.

"Most people with ALS die from respiratory failure, usually within three to five years from the onset of symptoms. The median survival time from onset to death is around 39 months, and only 4% survive longer than 10 years.

The best-known person with ALS, Stephen Hawking, has lived with the disease for more than 50 years, though his is an unusual case. " Information and paragraph found on Wikipedia.

Because of the unpredictability of ALS those who seek help from Dignitas are forced to go too soon because of the fear of ALS progressing too fast. In order to take their own life the person must take the medicine by themselves. In the program "Choosing to Die " hosted by Sir Terry Pratchett, Peter Smedley went earlier than he had to, in order to protect his wife from prosecution because she accompanied him to Zurich.  In the Suicide Tourist , Craig Ewert had Bulbar onset ALS and ended his life at Dignitas. Ewert's lungs and arms were affected. The program never did say why Ewert chose to go when he did but I'm assuming he might of been losing the ability to swallow or feared that might be next to go.

If Assisted Dying was available in the U.K. both might have waited  or enjoyed their families longer. It's just a thought.

This blog is my opinion and my opinion only. It is not to encourage assisted Suicide or Euthanasia. Nor am I advocating assisted dying.

Right to Live and the Right to Die

Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.

Euthanasia is possibly the most controversial subject being discussed all around the world.  The meaning of the word  Euthanasia means good death.

Euthanasia refers to the practice of intentionally ending a life in order to relieve pain and suffering.  There is three types of Euthanasia- Voluntary, Involuntary and Non-Voluntary.

Involuntary Euthanasia can be considered murder because It's done against a patient's will. The patient chooses not to die.

Non-Voluntary Euthanasia sometimes known as mercy killing) is euthanasia conducted where the explicit consent of the individual concerned is unavailable, such as when the person is in a persistent vegetative state.  It contrasts with involuntary euthanasia, where euthanasia is performed against the will of the patient . Active Non-Voluntary Euthanasia is illegal everywhere in the world except the Netherlands. In the Netherlands, Infants born with abnormalities can be euthanized upon the agreement of the District Attorney, Parents and Physicians. It's disturbing.

Passive Non-Voluntary Euthanasia is legal in some places in the world. It can be the with holding of nutrition, fluids and medications.

Voluntary Euthanasia or Assisted Dying is available in a few places.- Dignitas (Zurich, Switzerland) is the only organization to assist foreigners.

-The interesting thing about Dignitas is once someone sends their medical records and gets the "green light" to proceed 70% of the people won't contact Dignitas again. Once they know they have a way out if things get too bad might give them peace.

-60% of people seeking self termination from Dignitas are German.

- The thing I don't like about Dignitas is they allow people with Severe Mental Illness to end their life. How is the person giving informed consent? If a person is suffering from a devastating terminal illness is one thing but allowing a mentally ill person to end their life is another.

My Mom suffered from Depression and Mental Illness . Although she had a stroke (CVA) and died when I was 12, my Mom never tried to harm herself. She got help whenever she couldn't handle things or for the Depression. We all suffer from Depression at some point in our lives. Some people's depression might last for years when other's depression is short. It's troubling that Dignitas would assist a mentally ill person to end their life or because they're weary about the future.

The process begins by joining Dignitas and paying membership fees. Sending medical records is the next step. Once Dignitas gets records and diagnosis is confirmed, the person seeking help gets the green light to travel to Zurich for 2 seperate evaluations, 2 days apart. After the evaluations the prescription for Nembutal (barbiturates) is written and the person can go forward. The person signs legal documents and is recorded on camera confirming their intentions to end their lives.

The person is also recorded on camera taking the barbiturates to verify they done so willingly. How can someone with mental illness give consent?

It's more troubling that Dignitas profits from these deaths. But until it's available in more places organizations like Dignitas will exist.

One of the biggest fear of legalization of Euthanasia is that involuntary and non-voluntary Euthanasia will be used to terminate the lives of the disabled or elderly without their consent.Could this be The Slippery Slope, everyone fears?

Would Children and Physicians agree to Euthanize a parent for inheritance?

Would HMO (Health Maintenance Organizations), National Health Plans or Insurance Companies refuse to pay for further treatment but suggest Euthanasia? It's happened before and most likely would happen again.

The thing about legalizing Voluntary Euthanasia is the actual wording in the law to eliminate loopholes. The law must be carefully worded and a protocol followed when seeking help for assistance in dying. Any loophole would be exploited.

I am American and live in a conservative state in the Bible Belt. Physician Assisted Suicide is available in a couple states but most likely will never be available in my own state. Which is fine with me. I could never harm myself or allow anyone to intentionally end my life.

To protect my final wishes and take the burden off of my family if I ever receive a devastating diagnosis , I would set up a Living Will . A Living Will or Advanced Directive is a legal document that states what procedures I want and what I don't want. I would also appoint a Medical Power Of Attorney to speak for me when I'm unable to do so and let them know my wishes. 

Even though a Living Will is a legal document it can be changed at anytime but only by me.

There's many things we can do to legally shorten our lives without requesting Euthanasia if we are faced with a terminal illness.

We can refuse treatments , medicine or procedures . We can refuse nutrition and hydration, no feeding tubes or IV. We can refuse artificial ventilation, no vent or trach. We can be DNR, no Cardio Pulmonary Resuscitation. This information is often included in a living will.

In some situations , depending on the diagnosis voluntary euthanasia is understandable and should be allowed if everything else fails. And there is no hope. But a terminally ill person should not have to travel halfway around the world for relief.

Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.

My Family Storm

Disclaimer: Even though I do believe in personal CHOICE I am not advocating for Euthanasia or Physician Assisted Suicide.

Several months ago when we started spending more time with my husband's best friend we found out he had Cancer. Stage 4 lung cancer and he is terminal. His chemotherapy was stopped before Thanksgiving and is under Hospice care. His current condition is stable and is being kept comfortable. The interesting thing about T is he isn't sitting at home waiting to die. He is still getting out of the house a few times a week but the time out is getting shorter. Watching him get weaker is difficult for us to see. They visit us each Sunday and have spent Holidays with us since his terminal diagnosis.

Knowing each visit might be the last is hard. After working in Nursing I know his journey is coming to an end very soon. It might be a week or a few weeks but each day he has is a gift. He barely eats and is a walking skeleton. His pain is getting worse as he wastes away. He's on morphine and Percocet.

Getting to know T might have prepared us for the real storm. Getting used to the calmer days was a relief and then it happens. A storm that left us breathlessly clinging to hope and prayer.

A few weeks ago a family member was diagnosed with Lung Cancer. Because of minimal lung capacity she can't have a biopsy to determine how bad it is and chemotherapy isn't an option. The Dr feels with her diminished lungs and other issues chemotherapy might actually shorten her life at this point. Since her diagnosis she's ended up in CCU. My Mother-in-Law was allowed to go home on a bipap. Her health is deteriorating fast.

And if you think we have a lot on our plate think again. This was just the beginning of the storm...

Around the same time I was diagnosed with Type 2 Diabetes Mellitus and learning to live with my own restrictions, my eldest brother got sick. Really sick!

When he was in the hospital with pneumonia he had a horrible infection the antibiotics couldn't touch. When they ran multiple tests looking for the "source" of the infection they found a grab bag of issues. Some easily fixable and some more serious. Diverticulitis, gall stones, and he had a large umbilical hernia. The Dr wasn't too concerned because if they couldn't find the source of the infection he might go septic and fixing his issues would not matter anyways.  Sepsis is an infection of the blood and very difficult to treat.

In the last 2 months he's been hospitalized 5 times and 20 ER visits. His new issues bowel obstruction. During a routine colonoscopy on Monday the Umbilical Hernia popped out further and he had emergency surgery a few hours later. He was supposed to get that fixed after his sleep study in July but because of his increased pain he got it done. He was supposed to get released today but his oxygen keeps dropping.

And still the storm got more ferocious...

Two weeks ago when my Uncle was setting up home health services the Nurse thought he had internal bleeding and asked him to go get checked out. So my cousin took him to the ER of our local hospital instead of the VA . He had a bowel obstruction caused by a hernia and needed immediate surgery. Although the operation was successful he's having pulmonary issues. He spent 10 days in ICU on and off 15 liters of oxygen. Last Sunday his lung collapsed and ended up in the operating room again after they found something in the CT Scan. They did a biopsy.

All three of my Family members were in the hospital at the same time.. Fighting for their lives.

My Mother-in-Law and Uncle were in the same hospital , one in CCU (critical care unit) and the other in ICU.  My brother was in another hospital.

I do understand Terminal illnesses and life threatening complications. Our family is going through Alot right now. Hope and Faith gets us through each day. Even though we are facing a lot , we are taking things one day at a time.

It's understandable when someone says " enough already, I can't go on". I guess until we are in that situation we just don't know what we would do.  Seeing a family member go through horrific illness is not the same as going through it ourselves.  We see the visable signs of deterioration but we don't feel their pain or anguish. We can try to understand what they might be going through but until we walk that journey we can't really understand.

Disclaimer: Even though I do believe in personal CHOICE I am not advocating for Euthanasia or Physician Assisted Suicide.

Make Your Own Choice

Disclaimer: Even though I do believe in personal CHOICE I am not advocating for Euthanasia or Physician Assisted Suicide.

When I started this particular blog months ago I was unaware of the storm my family and I would soon face in regards to our own health.  Although Physician Assisted Suicide (PAS) is illegal in my particular state , it would never be a consideration anyways. I've had moments where I've wished the choices available included that option but that's not my decision to make because it's not me going through the disease . It's up to God to decide to call us home.

But at the same time after educating myself on certain illnesses PAS should be considered an act of MERCY for those going through an incurable disease. Unless we see a loved one go through a horrific disease or going through it ourselves it's easy to say self termination is wrong. It's about personal choice and the patients right to say enough is enough, no more.

It's sad when a person receives a diagnosis like ALS (Amyotrophic Lateral Sclerosis), because of the dire future. The first thing most do is learn more about what they are facing and over half of those newly diagnosed with ALS look into PAS with Dignitas or other options.  Most consider their families and make a choice to not follow through with PAS .

The sadder reality of those following through with PAS at Dignitas is that they are forced to leave too soon. No Dignitas isn't killing people, the person has to take the drug themselves. But some choose to go sooner to protect those traveling with them or out of fear they would be unable to take the barbiturates if they wait.

The final act is videotaped to show the barbiturates was taken by the person without assistance. And by their own free will.

Is self termination wrong if a person is facing a devastating terminal illness?

Disclaimer: Even though I do believe in personal CHOICE I am not advocating for Euthanasia or Physician Assisted Suicide.

She's back

After a few weeks offline n is back. Thank goodness she is. She's been ILL and the MND is sadly progressing.

Euthanasia and Right To Die

Disclaimer: I am in no way advocating for Physician Assisted Suicide or self termination. These are my personal thoughts on this issue.

When I started this particular blog I was more pro-choice than I am now. Over the last few months peering into the unknown world of ALS/MND through blogs and documentaries , my opinion of this issue has changed slightly.

In a way I've gotten to know individuals living with the "beast" and have began to care about them. They are no longer ALS patients but human beings fighting a debilitating illness that will eventually end their lives. How they live and die should be strictly up to them.

Can you imagine an illness that takes and takes from you until you're an empty shell but your brain is still intact? You can still feel pain in areas of your body long after the muscles have withered away. Can you imagine your mouth being so dry but unable to drink because you might aspirate? And the dryness is caused by a medicine to dry up excessive saliva to keep you from choking to death.

I can understand why people choose to go to Dignitas or risk arrest traveling abroad to secure the needed medication to die at home. Because of laws people are forced to make these decisions long before they need to. Their choice to go earlier than needed is to protect their family or whoever happens to make this journey with them. It's a sad situation anyway you look at it. If the disease professed to the point the person is kept alive through tubes and ventilation , the person and family suffers. If the person decides to quietly sneak off to Dignitas, the family suffers.

Family support is critical . I've noticed those who considered visiting Dignitas or followed through had less family support, than those who decided to enjoy life with their family....... Regardless of how much time they had left. 

Let your family know your wishes.

Whether you have ALS/MND, or any life threatening issue , set up a living will (advance directives) stating which treatments is acceptable and which isn't. Tell your family your wishes. The living will can be changed at any time. Please keep in mind its easier to not start a treatment than it is to discontinue.

Disclaimer: I am in no way advocating for Physician Assisted Suicide or self termination. These are my personal thoughts on this issue.

Approaching 4 weeks

It almost seems ridiculous to care about a stranger on the other side of the world or thousands of miles away. Had I not read certain blogs , they would of still  of had ALS or died. Amyotrophic Lateral sclerosis is the cruelest of all inflictions because there is no cure. There is several other illnesses that are just as cruel. But ALS is final is just a matter of time. . The Drs can give you a general time frame but even they can't predict how the disease will escalate or where it will strike next. Some with the diagnosis will deteriorate slowly, and the changes are unrecognizable. Others might progress more rapidly and then seem to plateau because there is nothing else to lose.

N progressed slowly at first and then experienced bigger losses lately. I am praying she's okay but with the uncertainty of ALS its hard to tell.

Very worried

It's been 22 days since activity on account. 22 days since any entry has been made. I'm truly worried about N. Has something happened? The MND is a serious, incurable and devasting illness. Her last couple months online the beast attacked daily loosing more and more abilities. Her absence could be caused by a few things...

Problems with Laptop or Computer
Unable to use computer do to decreased hand strength
In a hospice
Died

Her voice was almost gone so the Bulbar region was affected. She made two videos a month apart and the last one was harder to understand.

The sad reality of ALS it's order of progression (devastation) cannot be predicted. Some progress slowly at first with smaller physical signs of the disease and it might pick up steam. Others might progress quickly at first with noticeable changes shortly after diagnosis but seem to plateau.

ALS is often the last thing Drs rule out because the deterioration or area affected could be contributed to other diseases or injury. When there is 3 or more unrelated areas of concern ALS or MND is suspected. But other disease and conditions need ruled out to come up with a definitive diagnosis. If the Dr suspects ALS and the person has had a family member with ALS the Dr can look for the SOD1 gene that's present in familial Amyotrophic Lateral sclerosis (FALS).

FALS occurs in approximately 5% of ALS diagnosis, 95% of ALS diagnosis has no familial risk factor. ALS can sometimes take months to diagnose if the changes are subtle.

N has no family history of ALS .

I predicted months ago the blog might sit idle.

Not knowing is heartwrenching.

Still Worried

Hope is fading. The account has been idle over 2 weeks and to be honest I'm imagining the worst at this point. In a way I hope It's something minor like computer issues but with ALS progression you never know. :-(  .  Her diagnosis was 12/11 .

ALS/MND is a cruel and unpredictable disease that acts differently in each person. The typical patient is given 3-5 years. Many die within 14 months after diagnosis. Is the 3-5 years referring to  after diagnosis or initial symptoms? With Bulbar the time is much less.

Some live much, much longer, for instance Steven Hawking. He's now 71, he was diagnosed with MND when he was 21. He's had MND for 50 years. He's an educator who has taught thousands of college students and one of the most intelligent men who's ever lived. With the help of technology he's survived and still lives. He's had a remarkable life and career. He's a professor, scientist, author and father.

The lady I'm worried about was a teacher too. She's a mother, grandmother, artist and friend to many.

No wonder Dignitas looks so appealing after a MND/ALS diagnosis because its a shitty way to go. No I am not saying she went to Dignitas or even considered it. I'm worried the disease is progressing more quickly now.

So worried

I'm worried about a blogger I've followed since November. After quickly reviewing the first 11 months of her blog I have looked forward to reading 3-4 entries a week. She sometimes talks about the past but mostly about how she's been coping since her diagnosis. She has MND (Motor Neuron Disease), the cruel beast of all diseases. Her blog has remained idle for 13 days. The blog has sat idle before when she had a respiratory infection and when she got the supra-pubic catheter but never this long. It seems ridiculous to worry about a complete stranger across the big pond but I do.

Months ago when I came across her blog I noticed she looked into Dignitas when she was diagnosed with MND. She did consider ending her life but wasn't ready to go at that time. The thing about foreigners visiting Dignitas is if a person wants to use the services they have to drink the barbiturate (Nembutal) themselves. By time someone is "ready" to visit Dignitas they are no longer able to swallow the barbiturate or make the trip. A lot choose to go earlier in order to protect their family from prosecution.

I did find out about a suicide that the barbiturates was given through the PEG tube, he couldn't swallow. His suicide happened before the Swiss government changed the law, he had MND. Now the person wishing to "check out" is videotaped drinking the barbiturates (Nembutal) to show the police it was an actual suicide not forced. The person is asked multiple times on the video if this is what they want . The video is meant to show the person chose to follow through on their own free will and that the barbiturates was not administered by another person.

I don't think this blogger ended her life. She may be sick, in a hospice, hospital or care facility.

I fear she has lost her last bit of freedom and independence. Is she in a Hospice or a Care Home now? She did have carers at night and some carers during the day. The NIH paid for staffing but a couple weeks ago her night carer failed to show and she was alone all night. Not a good situation for someone not able to care for herself. She lost the ability to stand or transfer herself weeks ago from the wheelchair to bed. And vice versa. Or wheel chair to lift chair. She was forced to sit in her wheelchair all night when the Aide failed to show. 

I figured months ago the blog would sit permanently idle at some point and there will always be an uncertainty whether or not she passed away.  Maybe she will turn up online again?  I may never know.

Assisted suicide, Kevorkian, Dr Nitschke

***The whole reason of this blog is to encourage discussion of end of life decisions not to advocate or encourage euthanasia or assisted suicide***

In all honesty when certain diseases approach the point where the health is greatly comprised and It's becoming more of an issue just to make it through the day the appeal of assisted suicide seems greater than at other times.

I've watched quite a few programs about Assisted Suicide on YouTube that originally aired on BBC and PBS or other international channels. The controversy of euthanasia and assisted suicide goes beyond borders and timezones. It's being discussed and should be discussed. It's being discussed by families, legislators, in churches and court rooms.

It's heartwrenching seeing someone commit suicide or knowing what they are planning to do but at the same time I've never faced a disease that will slowly kill me. Or a disease that will steal every voluntary and involuntary movement eventually suffocating me, while my mind is intact.

Earlier in my life I was pro-life and considered abortion, suicide or euthanasia appalling. After working in nursing for 12 years and seeing some diseases, I'm more open minded. No I couldn't assist a suicide or witness the act but at the same time I couldn't condemn their choice either if they are facing a horrible diagnosis. And I could never consider it for myself.  But that's my choice.

At one time I considered Dr Kevorkian a murderer but because of Kevorkian people began to talk about a taboo subject. People are more willing to discuss end of life choices such as withholding medical procedures such as life support, tube feeding, Intravenous fluids , and no CPR.

If your facing a life threatening illness put your wishes in writing, appoint a trusting medical power of attorney to speak for you if you become unable to and discuss your decisions with family. 

Euthanasia , Exit International,Kevorkian, Dr Nitschke and Australia

*Sorry for being so quiet on this particular blog but I've been dealing with my own health issue (Type 2 Diabetes Mellitus).  The whole purpose of this blog is to encourage people to talk about and discuss with their families their wishes just incase they face a terminal illness or unable to voice their wishes later on.I AM IN NO WAY ADVOCATING OR ENCOURAGING ANYONE TO COMMIT SUICIDE.*

Dr Nitschke is an interesting man that causes controversy each and every day. He can't visit or speak anywhere without his motive being questioned and his baggage being searched. When he holds his "end of life" workshop around the world, he isn't speaking to younger people.  The average age of those seeking guidance about suicide is 70 years old. Please keep in mind he isn't just discussing suicide at his "end of life" workshops. He discusses:

*Living Wills
*Medical Power of Attorney
*Hospice and Palliative Care
* The laws about Physician Suicide
* Suicide

During the actual "End of Life" workshops Dr Nitschke carefully watches his wording, to not openly break the laws. Any individual seeking advice on actually committing suicide is spoken to privately.  In a way Dr Nitschke is like Dr Kevorkian, except Dr. Kevorkian was present and participated during the Physician Assisted Suicide.

Dr Nitschke like Dr Kevorkian has invented machines for the self administration of poisons or deadly gases, for the sole purpose of committing suicide. But unlike Kevorkian he's not usually present during the actual suicides. There is a fine line between Physician Assisted Suicide and Euthanasia he is not willing to cross. 

Dr Kevorkian set up machines and the person wishing to commit suicide pushed the button themselves but he was present during the actual act of committing suicide. Dr Kevorkian helped many people this way except the last suicide he was present at.  Dr Kevorkian administered the lethal injection to Thomas Youk himself. Even though Youk was in the later stages of ALS (Amyotrophic Lateral Sclerosis),  Dr Kevorkian was found guilty of Second Degree Homicide.  He served 8 years in prison.  Kevorkian's arrest and conviction was due to the fact Youk's suicide was broadcast on 60 minutes two months after his death.

Because of Kevorkian and his actions helping more than 130 people commit suicide, people started talking about a subject that was once taboo. It is no longer discussed in dark alleys or a corner of a room. It's on the news and in newspapers.  It's on the internet and talk radio.  The whole point is it's being discussed . The right to Assisted Suicide is available in Oregon and Washington (state). It recently passed legislation in Vermont also. The Death with Dignity act in Montana has been repelled, so assisting someone to commit suicide in Montana is now illegal. The Death with Dignity Act is Kevorkian's legacy as it will be Nitschke's in Australia.

To be continued at a later date......

Dignity in Dying in Australia

Kids buy drugs to get high, the elderly make drugs to die.....

A year ago I signed a petition online and have since received newsletters in my email from an organization called "Get Up". They recent newsletter was about legalizing Assistant Suicide in NSW (New South Wales) ..The next few paragraphs come directly from the news letter. The newsletter is between the **

**Dying with dignity in the face of an unavoidable terminal illness and horrific suffering is something that many GetUp members have told us matters deeply to them.

Here's the opportunity: there's a bill about to be introduced into NSW State Parliament that would give patients the legal right to request a humane, medically-assisted death (voluntary euthanasia). This option includes robust legal safeguards  and would only apply to individuals suffering from painful terminal illness.

Unfortunately we already know that too many Australians choose to end their suffering by the only legal means available to them. Options such as ending life support treatment, cutting off food and water or suiciding, often violently. These options are distressing, prolong suffering and cause further grief and anxiety. They can also push family, friends and medical support away when they're needed most.

The most up-to-date polling shows that more than 80% of Australians support assisted dying where appropriate safeguards are in place. 1 For those who are faced with the choice to end their suffering on their own terms, it's a difficult decision. In places such as Oregon in the United States (where assisted dying accounts for less than 1% of deaths) the knowledge that patients are able to end their suffering in the most dignified and controlled way possible has made provided great comfort to many approaching the end of their lives.**
  (Between the ** is quoted directly from Get Up's newsletter I did not write this nor will I take credit for it.)

Leading the way for PAS (Physician Assisted Suicide)in the Northern Territory is Dr Philip Nitschke.

Dr Nitschke said " It seems we demand humans to live with indignity, pain and anguish whereas we are kinder to our pets when their suffering becomes too much. It simply is not logical or mature. Trouble is, we have had too many centuries of religious claptrap." He works mainly with older people from whom he gains inspiration, saying: "You get quite inspired and uplifted by the elderly folk who see this as a quite a practical approach."  quoted directly from Dr Nitschke Wikipedia page.

Other than his remark about religion, I'm Christian, I agree with Dr Nitschke. If our pets were suffering and we did nothing we would be called cruel or inhumane but we expect the terminally ill to suffer. And we make them feel like criminals for even wanting a little dignity in dying.

Some elderly in Australia have been attempting to manufacture Nembutal by themselves. It's a dangerous process that can cause explosions and chemical burns. Some have succeeded in making the Nembutal. I'm sure some may or may not use it, they just want a choice.

Others have traveled to Mexico to purchase the drug risking imprisonment for smuggling it back home.

I'm American but this issue interest me because its so controversial all over the world. And everyone is talking about it and should talk about it. And I am not encouraging anyone to commit suicide. Or encouraging the cause. I'm just sharing the legal aspects of this issue.

First do No Harm

The basis for refusal of Physician Assisted Suicide is that it goes against the Hippocratic Oath, that most Drs have followed since the 5th century b.c.  The next words speak of not helping to cause an abortion. 

For some physicians they pick and choose what part of the Hippocratic Oath they will follow. Some Drs feel abortions are okay and some will try to get women to abort when an extra chromosome is detected through an ultrasound or aminocentesis. 90% of women carrying babies with Down Syndrome will abort. Only 10% of the pregnancies are carried to term.

The following lines are from the actual oath............

I will prescribe regimens for the good of my patients according to my ability and judgement and never do harm to anyone.

I will give no deadly medicine to any one if asked, nor suggest such council; and similary I will not give a woman a pessary to cause an abortion.

Pessary- something put in vagina to cause a miscarriage.

The Hippocratic Oath, the ancient words that guide most physicians and specialists.  The Oath that justifies refusal of some things but other words in this ancient Oath are disregarded.

*In two lines the physician agrees to not discuss or perform Euthanasia or cause an Abortion.

In modern times with modern laws Abortion is allowed and accepted in most cultures. But Physician Assisted Suicide is not in most places. Just a few places in the world allow terminally ill people to check out early. And the places that allows Physician Assisted Suicide, other than Switzerland, are heavily regulated. 

In order to use the Oregon Death With Dignity Act a person must be of sound mind and deemed terminal  with less than 6 months to live.  The patient must be at least 18 and a resident of Oregon. The patient must make 2 oral request 15 days apart before the prescription can be wrote. By following the guidelines all liability is removed from the physician and those assisting. Montana and Washington have similar laws.

In Switzerland the rules aren't as strict.  In order to use Dignitas services you must become a member and membership fees. After receiving the initial Green Light 71% never contact Dignitas again.

The evaluations and discussion of Physician Assisted Suicide goes against the Hippocratic Oath as does the act of assisting. Abortion does too but when a child is thought to have a genetic or chromosome issue the Dr encourages the mother to end the pregnancy. If the mother continues the pregnancy the child is often denied medical care at birth to hasten death.  Some Drs feel it is unethical to try to extend the life of the kids born with extra chromosomes in cases like Trisomy 13 and 18.

Every Dr learns the Hippocratic Oath but very few follow it all of the time.....

The other Two Gentlemen on Choosing to Die

During the program Choosing to Die , Sir Terry Pratchett and his assistant Rob interviewed two other Gentlemen besides Peter Smedley about Dignitas.

Mick, a former Taxi Driver, thought about visiting Dignitas when he was diagnosed with MND but decided to give the Hospice a chance.

When I watched the program Mick came across as being good natured and happy considering the circumstances. At the time of diagnosis Mick was only given 1-3 years, he has passed the intial 1-3 years 3 times over. Another Stephen Hawking?  His progression seems slower than some.  Mick even took the time to help raise the funds to pay for another nurse at the Hospice.

Mick has a great attitude. The last news file and video I found about him showed that he is totally dependent on the carers at the Hospice now. I wonder if he regrets not ending his life? If he had visited Dignitas he might of missed out on alot with his wife and kids.

The second gentleman's name was Andrew, a 42 year old Marine Biologist with Multiple Sclerosis. Andrew had a lot of pain and mobility issues associated with MS. He attempted suicide twice on his own before contacting Dignitas. Incidentally he would travel to Switzerland the same week as Peter Smedley. And like Peter, he chose to go ahead with drinking the Nembutal to end his life. Andrew's final moments were not televised like Peters as an attempt to maintain privacy. Or it could have been because Andrew's end was very long and drawn out.

Andrew's death took 90 minutes according to the interview his mom gave to the press. He continued to hang on long after going unresponsive from the Nembutal. The guides from Dignitas thought Andrew's mom being present caused this. Or Andrew's body reacted slow to the poison after taking strong medications for years. It must have been heart breaking for his family to witness this.

Andrew's mom wasn't too keen on the choice Andrew made. But she also felt she was being selfish if she tried to make him suffer longer to spare her feelings.

A lot of pro-choice supporters won't tell you about how long it took Andrew to die , but I will just to remain unbiased and truthful.

I believe under certain circumstances people should have the right to choose.

You go in as you were and come out in an Urn-- Dignitas

I used a quote from the program "Choosing To Die" as the title of this entry. The program was hosted by Sir Terry Pratchett and he was discussing Assisted Suicide with 3 gentlemen who considered visiting Dignitas.

Sir Terry Pratchett was saying things didn't seem right. And then he said..."You go in as you were and come out in an urn."

Terry was talking to Peter Smedley and Peter's wife about Dignitas. Peter had been diagnosed with Motor Neuron Disease and felt he would need to go soon or he wouldn't be able to.

But he decided he would wait until he was in Switzerland before choosing whether or not to seek assisted Suicide. By waiting to make the decision he protected his wife from prosecution in the UK.

If he chose to wait to visit Dignitas he might have been unable to travel or his breathing and swallowing might have been affected, which would of made assisted Suicide impossible.  Peter chose to go ahead and end his life at the Blue Oasis , 20 miles from Zurich. If Peter could of died at home, he might have decided to wait longer. He could have enjoyed his life longer with his family. Suicide is legal in the UK but assisted Suicide is not. Those assisting a suicide is subject to 14 years imprisonment.

He was afraid to wait because MND is so unpredictable but the end result is the same. Some progress faster in the matter of months. Others might take years. Drs and Neurologists can't predict which muscles will go first and when breathing is affected. When the ability to swallow is gone is another uncertainty.

In order to have assisted Suicide from Dignitas you must be able to communicate your wish to end your life and drink the Nembutal yourself.

So sometimes people are forced to go sooner than needed.

Dignitas and Dignity in Dying

Switzerland is the only country in the world that allows foreigners to come and have assisted suicide. There is a couple organizations that assists foreigners but Dignitas is the most used. Dignitas was founded in 1998 by the Human Rights lawyer Ludwig Minneli. Since then over a 1000 people have come to Dignitas to end their lives, 60% of those seeking help are German.

One thing that makes me question Dignitas is the fact they claim to be Not For Profit  but charge a considerable amount of money for their services.

The cost is approximately $5263.16 for their services and if Dignitas arranges the cremation or transportation of the body back to the person's country the cost is $9210. The fees paid cover medical cost, official cost and cremation.

I can understand the fees being so high if the body was being transported back home but most choose cremation and disposal of the cremated remains in Zurich. In the USA being cremated is considerably less. In the UK the cost of cremation is comparable to the USA.

So what is the real cost? And if they were actually Not for Profit, why was Ludwig Minnelli refusing to share Dignitas financial records?

The Guides that assist with the suicides are unpaid volunteers. The actual drug, Nembutal, is not expensive. There generally aren't funeral cost other than cremation.  Administration Cost?

I'm not saying getting help is wrong to end suffering. I'm just sick that someone is profiting from this. What's the price of a human life?

I'm reminded how precious life is

Life is precious, a gift from a higher being. God gives life, guides our choices and calls us home. Every life has a purpose but God allows us to live our life. By living our lives sometimes we make conscientious choices and sometimes not. With religious teaching we are taught right from wrong. To trust in God, which I do. To pray for guidance and peace.

When faced with illness we try to prolong life but what if the illness is unbearable? And your given two choices? You can continue the current treatment and deteriorate further or refuse further treatment.  By refusing you might be hastening your death.

After a long fight nobody judges if someone refuses further treatment but when they choose to just end it all at once we denounce and judge?

I'm reminded of....

After reading the entries yesterday, I was reminded of a dear man that resided briefly in the nursing home I worked at. H did not require 24 hr care, other than needing help with his socks, he was pretty much independent.

During H's time with us assisted living facilities did not exist in our area which would of been a better choice for H .Once you reached a certain age or had health issues a Nursing Home was an option ,the only option other than remaining at home. Since he didn't have kids and had never been married, he came to live at the nursing home instead of being alone.

He did have an older brother, & a nephew living in the community. He also had a sister-in-law that lived at the Nursing home. B had the later stage of Alzheimer's disease. I think seeing B on a daily basis played a big part in his decision to commit suicide.

A wave of sadness washes over me when I think of H. Don't get me wrong for a long time I was angry with him. He was a man that we all admired but yet he took a coward's way out by committing suicide. Or so I thought at the time.

To go to eat, visit the nurses station or to take a shower, H had to pass by B's room. I remember seeing him stop in her doorway and staring for a minute or two.  He did this several times a day and would not go in the room!

Was he remembering her when she was healthy or did he see his own future? Nobody would ever know. Perhaps seeing other residents in wheelchairs and with various levels of disabilities scared him.

Did he feel or notice small changes in himself that made him fear the future? Nobody will ever know.  To all of us he was a happy man, until that day. He always had someone stopping by.

Unlike some of our residents H had friends. He had a large circle of friends that would visit often or take him out for the day.

Sometimes he would just visit his house to enjoy the solitude for a few hours, before going back to the Nursing Home. Normally when he was going out he would tell the nurse and let the rest of us know so we wouldn't worry..

His last trip to his home he blew his brains out....I'm no longer angry with him because I don't know what he was going through mentally and physically. He made a decision which was his to make certainly not anyone else's.

Sadness, is this the end

For months I been a quiet observer to several different blogs and blog subjects. Sometimes coming out of my comfort zone to comment, most of the time reading quietly without saying a word. On some issues I been brutally honest and very opinionated. But on other things I stay quiet.

I was surprised today when I read a couple blogs I follow on a regular basis mentioned "suicide".  One has progressed far enough long travel or obtaining the medication is no longer an option by themselves. The other has the needed drugs to end it.

I know one day that the blogs will become idle or just disappear, when they die. Will it be by their own hand or complications from MND/ALS ? I don't know!  Maybe they will plateau for awhile and that might encourage them to hang on.Or the diseases will progress to the point communication becomes impossible, thus leaving the blog idle.

I quietly read the blogs today and closed the pages refusing to encourage or discourage either by my comments. Unless someone is in a similar situation or see a loved one suffer on a day to day basis, we will never understand the devastation of the disease.

These aren't uneducated , uninformed or lazy people. Until their bodies started to fail their lives were busy with work , family and activities. Their lives were full. Slowly their independence and dignity is being stripped away by a cruel disease that has no real treatment options and no cure. Their future is bleak and frightening.

RIP

Today my Uncle Ronnie lost his fight with cancer. He's in a better place as the suffering is over. No more pain and discomfort. He's with his sisters Ella, Betty and Janice. His brother Bill. He's with his parents and son.

Sadness

When I originally started this blog, I wanted to discuss physician assisted suicide. I think it should be more readily available in certain circumstances and it should be their decision not the family or government.

I do not think it should be available to those who are not terminally ill.

When the quality of life becomes non-existing and each minute is unbearable why not?  When each moment spent is excruciating why not? If an animal was suffering we euthanize if we choose not to we are called cruel and inhumane. But It's okay for humans to suffer?

Could I make this decision for myself or a loved one? I don't know. My condition is not terminal but I do have considerable pain. My pain is controlled with medication. And because of my belief in God termination of my own life is not an option.  But I see and have seen the end of life because of terminal illness.

Because I have seen many illnesses run their course I think those suffering should have a choice.

If you read my last post then you know I have a loved one with a terminal illness. Uncle R has liver cancer, his kidneys have shut down . He is suffering but is being medicated to ease him. He was moved to a hospice on Monday, he was only given a couple days. I have asked God daily to take him home. He's still hanging on. I pray the medicine keeps him comfortable until his spirit leaves his body.

May God lay his loving hands on our family during this time of grief.

Act of Mercy.

Seems strange I'm posting this so soon after my post of my friend becoming a widow.

Tonight I will pray the lord will show Mercy to my uncle and take him home. He is dying and his next minutes/hours will be the last he will ever have.

He has terminal liver cancer and his organs are shutting down, the kidneys have stopped functioning. He has dementia from the pain and knows nobody.

I pray that his last moments are peaceful and merciful. God bless my Uncle. He will be with my mom and his brother soon, his son and parents.

3 things certain in life

There is 3 things certain in life . We are born, we live and everyone is going to die.

How we live life is completely up to us. Live life and each day to the fullest because you don't know what tomorrow will bring. Live, love and share the joy in life with someone as each day is a gift.

Sorry I been quiet

I want to apologize on here. One of my online friends recently became a widow. Her husband has fought cancer for years, including colon cancer and brain cancer. Think he was recently moved to hospice care and died within days.

She knew it was coming but not like this not so soon. My heart breaks for her losing her husband, 2 days before her birthday. She's 44 today, he was 49..

I posted condolences to her but see no joy is wishing her happiness today. They recently celebrated 18 years of marriage. The day before her birthday she arranged his memorial service and arranged to have him cremated.

In a way her life parallels my own. I married my husband  over 21 years ago, it will be 22 years in July. I was 20, he was 27. He has a child from his first marriage, we have none only our 2 dogs and a cat. T has 3 cats no kids.

I knew before I got married children was not an option. Because of C I'm a grandmother of N. I helped raise my nieces and a nephew. So I'm close to them and their kids.

She's alone now....

Advanced Directives

In the United States if you don't live in the 3 states that has the Death with Dignity law and can't afford to travel overseas or are in no condition to travel set up a living will. An advanced directive can be an invaluable tool along with appointing a trusted medical power of attorney to carry out your wishes.

If you're not American check on your country's law in regards to your rights to refuse treatments.  And don't wait until your older or sick, do it now. Look at the Terri Shiavo case. She went into cardiac arrest in 1990 and remained in a persistent vegetative state until she died in 2005 after her feeding tube was discontinued. Her husband was appointed her Power of Attorney in 1990 and petitioned the court in 1998 to discontinue the feeding tube.

Terri Schiavo's case was long and drawn out. Her parents fought hard to keep her on the feeding tube as she did respond to her mom's voice on occasion. Terri' s husband claimed allowing her to remain on a feeding tube went against her wishes therefore she should be removed. It went back and forth in the court system and religious leaders got involved claiming it was euthanasia to remove Terri from the artificial feedings. In the end she was removed. Since Terri didn't have an advanced directive, her husband had the right to decide. She was 41 years old when she passed away.

Having a Living Will allows you to have a choice and your Advanced Directives can be changed.  You should review it every 1-2 years and update it whenever changes seem necessary. It's easier to say no to procedures than it is to discontinue treatment once it starts. Be proactive with your medical care and once you decide, let your family know your wishes.  And appoint a Medical Power of Attorney to make sure your wishes are followed just incase you can't communicate your wishes.

For example, I never want put on a ventilator or have a Trach. If I go into cardiac arrest I choose not to be resuscitated. I would consider tube feeding if a chance of recovery is possible. These are the sort of things that goes in an advanced Directive. Discuss it with your Dr , and he/she can advise you of how to make your wishes known.

You do have a choice.

Financial suicide.....family support

One of the things I notice when I follow other blogs is the financial aspects of terminal illness. I have read 3 blogs where committing suicide is mentioned.

One onsidered ending his own life out of fear of bankrupting his family , of seeing everything he worked for being sold to help with the cost of his care. Let's face it some illnesses are not cheap and most government health plans require the person to exhaust their own finances before the plan kicks in.  Medicaid is like that in the United States especially for long term care in a Nursing Home.

The other 2 blogs spoke of fear of dying alone or depending on others for care. I know what It's like asking others for help. After my back surgery I was 90% dependent on my husband and family. I couldn't shower , dress myself, walk by myself, get out of bed or take myself to the bathroom. I knew to be patient because I would get better. It was so hard asking for help and relying on others for care, especially needing help to the bathroom. The hardest part of it for me is I used to be the care giver, now I was the patient. With therapy I got better. I was fortunate I had good family support. So many people out there don't have that.

In Craig Ewert's case he didn't want to suffer and cause his family to suffer during the duration of his illness. He didn't want to burden his family anymore than he felt he already had. I truly believe he felt he had no choice but he loved life just the same. He was scared to make the journey to Dignitas but he knew the reality of his diagnosis which scared him worse. Thankfully his wife wasn't held responsible for helping him go to Switzerland.

My thoughts

I think one of the reasons why assisted Suicide isn't allowed in most countries is out of fear the elderly and disabled will be systematically murdered or denied healthcare. If you think about it , it has happened in the United States. In 2008  lung cancer sufferer Barbara Wagner was denied a cancer drug by her insurance company. She was offered the barbiturate to end her life as an alternative to the drug she needed. The pharmaceutical company learned about Barbara and provided the medication for her. Another Oregon resident, Randy Stroup, was denied because it was not a cure for his prostate cancer. It would of gave him a few more months. Both Randy and Barbara have since passed away. These aren't isolated cases, it happens quite often with HMOs. It happens every where not just here. 

I've read a lot of ALS/MND blogs and one thing I noticed in the UK is slow  to act to help improve the quality of life for those with MND. Therapists and Drs suggest a therapy or equipment by time the equipment is received the person has declined to the point the equipment is no longer necessary. If the person with MND has the funds they pay for it out of pocket instead of waiting for the national health insurance to pay for it.

Perhaps this is the Slippery Slope many people fear. That once it's allowed more services will be denied and make the health plans more cost efficient.

The internet can be a dangerous place

Remember 20 years ago when you received a diagnosis and the Dr would tell you a few things about it but if you wanted to know more you went to the library to research it yourself? The information was limited to the books available. After learning a few more things (the Dr didn't tell you about) you were satisfied that this diagnosis was correct or in some cases incorrect because certain diagnostic tests weren't done. Some conditions have similar symptoms but in order to properly diagnose it's a process of elimination, such as ALS.

These days when you receive a diagnosis, you simply ask Google if you are still unsure of things after the Dr's brief explanation of the diagnosis. Or if you start to feel sick you ask Google first or Web md. Often depending on the information available by the click of a mouse and not by an actual diagnostic test to determine diagnosis. This can be dangerous. In the case of ALS many of the symptoms can be associated with other illnesses.

Once you get the diagnosis you seek out blogs and forums to learn what to expect. Reading other people experiences with the diagnosis can be enlightening, educational and dangerous. What makes it dangerous? Some people search out the people who has been recently diagnosed to encourage the end. It happens.

Because some take each new day after the diagnosis with a grain of salt. While others don't take well to the changes or deteration, deciding to Write the final act of their life themselves.

Craig Ewert contacted Dignitas soon after his diagnosis. Did he seek out forums or just happen to hear about Dignitas in passing? Perhaps he learned about Dignitas from a newspaper article? The documentary never did say. Craig spent over 30 years as a Professor in computer science so he of all people knew how to search for things online. Most likely he read every article available about his illness.

Craig and his wife spent a few months saying goodbye, discussing the trip to Switzerland. If you listening closely to his thoughts on suicide he seemed depressed that he didn't have more time. Was he sad to have assisted suicide? I don't think he was. I think his sadness was that he didn't have more time with his wife.

Switzerland is the only country in the world that allows outsiders to come in for assisted suicide but the person has to drink the barbiturates themself. Craig Ewert had a NIV (non invasive ventilator) so his breathing was affected. His arms were useless and used a voice activated computer. Maybe he thought his ability to swallow would be next. Or if he waited longer his wife could be held responsible for his choice. Craig was American but residing in the UK. Maybe if it was available in the UK he could of spent more weeks enjoying his time with his wife.

It's just a thought.

Is it the easy way out?

Ona Munson plagued by ill health chose to end it in 1955 by overdosing on barbiturates. She left the note....

This is the only way I know to be free again.... Please don't follow me.

Ona Munson played Belle Watling in Gone with the Wind.

Judy Garland  died of a barbiturate overdose. Judy's overdose may or may not have been intended. She did have significant liver damage.

Marilyn Monroe took barbiturates to end her life.

And most recently Mindy McCreedy by self inflicted gunshot wound. She put a gun in her mouth.

4 beautiful women gone by their own hand. Each had their own reason. Was the reason worth it? In my opinion no.

If a person was suffering immensely with ill health is one thing but to do it because of a crappy day is another.

***This blog is in no way advocating suicide. It's to encourage discussion. ****

Suicide Tourist, Right to die

A few years ago a documentary was made of the last few days of Craig Ewert' s life. He decided to use the services of Dignitas after being diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrigs Disease.

Mr Ewert was a retired University professor from the United States. Craig and his wife of 37 years was living in the UK at the time of his diagnosis. His upper extremities and breathing was affected.

ALS is a terminal illness that affects people differently. The muscles affected and rate of the atrophy varies from person to person  .The patient normally dies 2-5 years after diagnosis. There is no cure. The neurons that send messages from the brain to the muscles stop transmitting causing the muscles to die, eventually leaving the person unable to move on own, eat, breathe and communicate but the brain's intact. Mr Ewert knew this. He made a choice to travel to Switzerland (Dignitas) to end his life while he was still able to swallow the barbiturate called Nembutal.

Suicide is legal in the UK but assisting is not. His wife could of faced  imprisonment for helping him go to Switzerland.
What are your thoughts on this?

Euthanasia

Good Death is the Greek meaning for Euthanasia. What is good about dying? Nothing really , unless it has been a long, drawn out illness and the person has suffered immensely. Death becomes a release for the person suffering and for the family. Seeing someone you love suffer for weeks or months is not for the faint of heart. You try to hold on and hope your loved one can beat this. You pray for better days and a cure. You pray for more time with your loved one. You pray and Pray. In the end you pray that the suffering ends and your loved one finds peace.

Working in healthcare for 12 years I have witnessed terminal illness at many stages but ironically the first death I witnessed was not an older person or someone with a terminal diagnosis. She was talking and a minute later she was gone, her death was that quick. I remember seeing the official death certificate at the age of 12 and the cause of death, it said CVA. I didn't know what CVA meant but later on when I started studying Nursing I found out it meant stroke. My mom died of a stroke, she was only 42.

In hindsight when I look back now I remember the days leading up to the stroke. We had traveled 100 miles earlier that weekend and my mom got sick. My dad took her to a local hospital and they couldn't find anything wrong, basically said she was imagining it. That she was crazy.

So we headed home, less than 2 days later she was gone. I wonder now if she was having TIA (Transient Ischemic Accident) also known as mini-stroke. Sometimes mini-strokes occur as a warning sign to let you know there's a problem. The medical treatment in 1983 was not that advanced for strokes, she died instantly. With my mom I always ask myself what if the Drs did further testing would she have lived longer? Seen all her kids graduate? If the Drs could of saved her, what would of been her quality of life? In a way she had a good death. I know that now. I know she's watching over me.

Being raised in the church we are told when our time is up, God calls us home. That each life is a gift and we are here for a purpose. Once our journey on earth is done, we are welcomed back home in Heaven.

What about when the illness is long and drawn out, the suffering is unbearable? If you have a pet suffering, euthanasia is the right thing to do. If you allow a pet or animal to suffer you are called inhumane but its okay for humans to suffer?

Physician Assisted Suicide

Physician Assisted Suicide is possibly the most controversial issue on the news these days. What are your thoughts on this issue?

(I am the grandchild of a Wesleyan Minister and was raised in the Church. I attended Baptist services & Catholic Mass as an adult, so religious teaching has always been a big part of my life.  Plus I worked in Nursing for 12 years.. so will share my experience throughout this blog.)

I'm American and currently 3 states allow P.A.S. , Montana, Oregon and Washington.

The first Death With Dignity Act  (Oregon ballot measure 16) was passed in 1994, 935 have had prescriptions written and 596 have ingested the medication to end their lives as of 2011.  The average age of those choosing to use this law is 71 and 80.9 had terminal cancer.

Until a year ago I didn't know about this issue because I live in a conservative state. Sure I knew about Jack Kevorkian but thought this issue ended with his imprisonment. I was so wrong. His actions and the debate didn't start or end with him.  Because of Kevorkian the debate was more in the news and more people was willing to discuss it. I happed to find a video on YouTube, the suicide tourist, that opened my eyes to the subject.

During the life of this blog I will discuss the current laws and my thoughts on this issue.