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.