Love is All There Is

Legal Issues

It’s something we all should have ready, even without a terminal diagnosis, but once you have a terminal diagnosis, it is crucial to get some legal affairs in order so that loved ones aren’t left wondering what your wishes are. Here are a few recommendations.

Last Will and Testament. These are customizable and state- or province-specific. Be sure to contact an attorney if any property is involved. Mary did not own any property or have any asets, so she had not executed a will, which made it more challenging for me since we were not legally married. It was all the more crucial for us to have all the other documentation in place.

Fill out your Advance Directive aka Living Will: In the US, these are state-specific forms. They do not require an attorney, but must be filled out voluntarily, designate a proxy to make decisions on your behalf, and often require witnesses. You can download the forms here:
US http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
Canada http://eol.law.dal.ca/?page_id=231
This was the hardest form for Mary to fill out. She did not want to talk about end-of-life care. She did not want to think about how the disease would progress. She did not want to decide in advance about life-sustaining treatment. It took a month of long talks, tears, and the first arguments we EVER had in our relationship before she would complete them. From that moment on, I carried the original and copies on me at all times.

Be sure you have your Power of Attorney (POA) ready and that the person(s) you designate are aware of their role, and of your Advance Directive. This document must be voluntarily signed by the patient, while still “of sound mind” and must be notarized. A “triggered” Power of Attorney takes effect after a physician documents that the person can no longer make their own decision. Another type of Power of Attorney is usually granted by a court and is not voluntarily given by the person or is due to the person not being “of sound mind”. Depending on how the POA is filled out, in can include the ability to make medical decisions, legal decisions and financial decisions for the person. It is important to note that a Power of Attorney ends at death, so the designee must take care of legal/financial issues prior to the persons’ death. The forms can be found here.
US https://www.rocketlawyer.com/form/power-of-attorney.rl- Canadahttp://www.lawdepot.com/contracts/power-of-attorney-form/…
Mary had to have a cardiac ablation procedure in 2009. Because of what she had seen her father go through when he had open-heart surgery, she wanted a triggered POA in place prior to that procedure. Once she was diagnosed with ALS, I carried the original and copies on me at all times. And I did have to trigger it eventually. That was one of the hardest things I had to do – to prove to the doctors that she was no longer able to make the decisions regarding her care, and to take that away from her.

A “Five Wishes” document combines a Living Will with a Durable Power of Attorney for Health Care and is available in some states.
US – https://www.agingwithdignity.org/
We did not use this, so I am not as familiar with it.

A POLST is a Physician Orders for Life-Sustaining Treatment. If you call for help, emergency responders are REQUIRED to take ALL measures to sustain life unless you have Physician orders stating otherwise – even if you are on hospice. Advance Directives do not work in these situations. This is the document that can show emergency responders that you are a DNR and they then will not do CPR, but will respond to other medical needs. Other names for a POLST: MOLST, MOST, POST, TPOPP.
US http://www.polst.org/
Canada https://www.interiorhealth.ca/…/Medical-Orders-for-Scope-of…
This form was posted on our refrigerator in order to quickly provide it to emergency responders. I also carried copies of it on me.

Appointment of Person Authorized to Dispose of Remains. These are state-specific forms that allow a person to claim the remains of the deceased when they are not the legal next of kin. This form must be executed prior to a Power of Attorney being triggered. Again, the POA ends at death, and will not give that person the power to claim the remains and determine what happens with them. I have not been able to locate a central website that houses these, so you would have to search for your state or province, or consult an elder attorney. I was able to use my employer’s Employee Assistance Program to speak with a local attorney and get this form at no cost. When we executed this, Mary was not able to physically sign the document or speak out loud, so we filmed her agreeing to the document and designating a proxy to sign the form on her behalf. We made sure that her lips were visible in the video so that someone could read her lips to see she was giving consent.

These are just some suggestions. This is definitely not a comprehensive list. Please consult a local attorney for any specific concerns you have, and to be sure your documents will be recognized and will hold up in court if challenged.

By bansagart, ago

When you need to go to the hospital

I live in a small town – population 600. We have a fabulous volunteer fire department with volunteer paramedics who work closely with the local ambulance company. I know because while Mary was alive, they were frequent visitors at our home.

The closest hospital is 12 miles away. They know nothing of ALS; they didn’t even properly treat Mary’s bloody nose well before her diagnosis. Long story. Suffice it to say there is no way in hell she would go there (neither will the ambulance drivers). The next closest hospital is 19 miles away. We went there several times, when it was “unplanned/urgent”. The hospital next to the ALS Clinic is 29 miles away; that’s where we went for “planned” stays.

Some tips to share from my experiences:

1. Before an emergency: Contact your local Fire Department. Let them know someone at the address has ALS; educate them in advance if you need to.

2. Before an emergency: Contact the ambulance company. Have them flag your address with someone who has ALS, who may be unable to communicate, and what equipment they use.

3. ALWAYS go to the ER by ambulance. You do not want your pALS hanging out in the waiting area, exposed to who knows what, with a compromised ability to shake off even a cold. “Walk-ins” are automatically lower on the triage scale; if you come in via ambulance you will be in a treatment room immediately.

4. Arrange ahead of time with your ALS clinic; if your pALS can wait, have ambulance personnel take them to a larger hospital. Tell them it is “Physician Request”.

5. If your pALS uses a bipap/avaps/vent, send it on the ambulance with them. Have them plug it in to the ambulance outlet so they are actively using it when they arrive. It will make it harder for the ER personnel to think “oh they don’t need it, it’s just a cpap” if they are already on it. They may, for liability reasons, want to switch your pALS to the hospital’s equipment. That’s fine; they can get the settings right much more quickly with the home equipment there.

6. If there is any chance your pALS could be admitted, take your Cough Assist with you. Small town hospitals may not have one; larger hospitals may take days to track theirs down. Same goes for feeding tube supplies and formula.

7. Always have an updated medication list; while waiting for the ambulance, note the date, time and dosage of the last time they received each meds. Send it with them on the ambulance, along with a list of any allergies. Don’t trust that the hospital will have them on file just because you’ve sent them before. Take copies of these with YOU: POLST, Five Wishes, Living Will, Medical Power of Attorney, DNR, etc. I always had the originals and copies so the originals never left my hands.

8. If your pALS has trouble communicating, take any communication equipment with you to the hospital.

9. Don’t be afraid to challenge the ER personnel about what your pALS needs. Ask if they are familiar with ALS. Ask if they have a neurologist, pulmonologist, respiratory therapist available. Give them the numbers of your pALS’ doctors and suggest they call for a consult.

10. If you don’t get what you need, if you are being brushed off, ask to speak to the Patient Advocate or Quality Management team. Often this is enough to get them moving.

Call on your ALS Community – other CALS, widows, family members. Let them know what support you need. There are a lot of experienced folks around. But also remember every pALS is different, every pALS has a different medical history; what is right for one person is not the best choice for another. Trust your gut.

By bansagart, ago

The Bucket List

When you hear an ALS diagnosis, once you get over the initial shock, you start to think about everything on your bucket list that you might be able to complete, and everything that will never happen. Some people have enough time, slow enough disease progression, to check things off of their bucket list. For others, the progression is so fast, that the Bucket List remains unchecked.

The summer before her diagnosis, July 2013, we drove down to California for my parents’ 50th Anniversary. Fortunately, driving meant we got to see a few things Mary said she always wanted to see. We drove out of our way so that we could drive through the sequoias. We saw the Golden Gate Bridge and drove over it. We stopped at the Jelly Belly factory. She loved it.

After diagnosis, some friends and I planned a weekend getaway at the Oregon coast for February 2014. I had a gut feeling it would be her last trip to the coast – her last trip anywhere. It was a difficult, challenging, and uncomfortable trip for both of us. She could no longer safely walk, so she spent most of the weekend in a stuffed chair, hooked up to her bipap, looking out the sliding glass door at the pond, watching movies and chatting a little. She was pretty quiet. She wouldn’t let me take any pictures of her. At the time, I think she was upset that I had dragged her out there. But before we left, we drove along the coast where she could see the ocean out of the car window one last time.Image may contain: sky, bird, outdoor, water and nature

A few months later, my parents came up for a visit, and I rented a wheelchair van so we could take her a couple of places in the power wheelchair. We went to a local nursery so she could wheel through the plants, looking at the roses and herbs like we had done a hundred times before. But she wouldn’t buy anything. We also took her to the Evergreen Aviation and Space Museum. She got to go into the Spruce Goose, and look at old planes and motorcycles. She got to see part of the Berlin Wall, and chat with my dad about the space program he had worked in while looking at planes he had worked on. She had always loved aviation and space vehicles. She pushed herself and we stayed almost all day, despite the heat. It was worth every moment to see the joy on her face.Image may contain: one or more people, people sitting and shoes

That was the last place she went, other than to medical appointments. So many things on her bucket list that we never got to do.

You never know what life will bring to you. Take the opportunities to fulfill your dreams while you can. Take the trip. Go to Disneyland. Swim with Dolphins. Skydive. Whatever you “always wanted to do” – do it!

By bansagart, ago

It’s not as rare as you think

When Mary was diagnosed, I didn’t realize I was already connected to people around the country who had been impacted by ALS. It turned out I knew four people who had lost a parent to ALS, and another who had lost a good friend. I soon met many more people whose lives were impacted by ALS: PALS, parents, children, spouses, friends, cousins… all of us forever changed by this horrible disease.

According to the ALS Association, ALS (also known as Motor Neuron Disease) typically strikes between the ages of 40 and 70, although it can strike at any age. At any one time, more than 20,000 people in the US are living with ALS. It is estimated that someone is diagnosed with ALS every 90 minutes. And every 90 minutes, someone with ALS dies.

Since becoming an unwilling member of the ALS community, I have become friends with people in the community around the world, some of whom I now count among my best friends. I have shared the journey with them from diagnosis to death, seeing more of both than I ever expected to. There is a unique connection that we share, unique and tragic. Every new diagnosis is the diagnosis of someone in my family; every death is that of a family member.

I help to moderate a Facebook group for spouse caregivers, and two and a half years after the group was founded, we are adding anywhere from two to ten new members a week. The journey of a spouse caregiver is unique, as we try to balance the role of caregiver and spouse/significant other.
There are decisions to make, tears and laughter to share, knowledge and experience to impart on those who have not yet walked the entire journey. That support group was my haven, my support system, while Mary lived her ALS journey.

Two months after Mary died, I founded a Facebook group for ALS Widows and Widowers. We support each other starting with the day of loss and moving through the years as we try to re-create who we are now, newly alone, grieving, reliving the impact of ALS on our lives every time there is another diagnosis or death. Yes, life goes on, but in a much different way after what we have experienced. We say that “ALS is the gift that keeps on giving” – that the devastation does not end when our loved one dies. In many ways, after the loss, we just begin to realize what we have lived through over the previous few months and years.

I honor all of those who are fighting ALS, the PALS and CALS, the researchers and non-profits, the medical personnel, the therapists, family members…. we need you. For those of you who have experienced ALS and are grieving a loved one, you are not alone. There are in person and online support groups for you. For information on those, PM me or leave a comment below.

By bansagart, ago

Questions

An ALS diagnosis brings a myriad of questions. Here are just a few.
– What is the prognosis? It is 100% terminal – there is no cure.
– How long do I have? On average, 2 to 5 years from diagnosis. Some last 20 years or more. Some die within one month after diagnosis. People make guesses, or estimates, but there really is know way to know.
– What happens when my tongue and mouth muscles stop working? You will start experiencing “slurred” speech, and eventually lose the ability to speak. You will have options of low-tech and high-tech communication devices, depending on how much use of your eyes, hands, and feet you still have. Mary was able to speak until she had the trach surgery. By that time, she had minimal use of her hands or feet, and the eye gaze devices wouldn’t work for her. We did our best to read her lips to find out what she was saying.
– What happens when my throat muscles stop working and I can’t safely swallow any more? You can keep trying to eat and risk aspiration pneumonia or choking asphyxiation. You can choose to stop eating and eventually not be able to swallow thick liquids either, which will lead to death by starvation. You can choose to get a feeding tube placed through your intestinal wall and into your stomach and receive all your nutrition in liquid form. If you choose to do this, you should do the surgery sooner rather than later, before your breathing is too compromised. Mary had her feeding tube placed three months after diagnosis because her breathing was so compromised that they were afraid she would not be able to come off ventilation after the surgery.
– What about the breathing? In most cases, the diaphragm nerve (the phrenic nerve) is the last to go. In some people, it starts earlier, or even first, like with Mary. this leads to diaphragm paralysis, and the inability to inhale or exhale. The lungs can still exchange gases, but the diaphragm can no longer make the lungs inhale and exhale. Some people have had a DPS, or diaphragm pacing system, implanted. This has had mixed results, and is not usually recommended any more.
– What can I do about the breathing? You can choose to do nothing; you will experience carbon dioxide buildup which will cause loss of appetite, confusion, personality changes, lethargy, coma, death. As the air hunger gets worse toward the end, there are medications that can help make you more comfortable. You can choose to use non-invasive ventilation via a bipap/avaps (similar to a cpap) that will force room air into your lungs with positive pressure and assist with the exhale using negative pressure. You can have a full-face mask, a mask that only fits over your nose, or nasal pillows. Mary used the nasal pillows, since it allowed her to talk and eat and drink while having her breathing supported. Eventually, the bipap/avaps will not be enough, and you will have to decide whether or not to have a tracheostomy and go on invasive ventilation. Mary chose to do that 14 months after diagnosis.

Each of these questions leads to more questions, more decisions, more loss. ALS takes every ounce of strength out of the PALS (person with ALS) and CALS (non-professional caregivers of patients with ALS). It is important to have a support team of medical professionals, therapists and social workers, and spiritual leaders if desired. That will be the topic of another post.

By bansagart, ago

The process of getting diagnosed

On average, it takes two years from noticeable onset of symptoms and one year of medical attention to finally be diagnosed with ALS. For some people, it is a quicker process (for example, if they have a significant family history of ALS and one of the identifiable genetic mutations); for some people it takes longer.
Mary’s diagnosis was complicated, but really did follow the above pattern. She had been living with fibromyalgia for 15 years, already walking with a cane, with a base line pain level of 4-5 on a scale of 1-10. She had also been diagnosed with rheumatoid arthritis (RA) and osteoarthritis (OA) about 5 years earlier.
She went to her rheumatologist with some new symptoms (neck weakness and stiffness, loss of appetite, a large numb patch on the left side of her back) who said they were not related to the fibromyalgia or RA/OA, and referred her to her PCP.
She went to the PCP with a two-page list of concerns. The PCP took one look at the long list of seemingly unrelated issues and handed it back to her, expressing her frustration. Although the PCP did give Mary a referral to a neurologist, she wrote in her chart that it was likely somaticization.
Over the next year, Mary underwent multiple neurological exams, blood work, and scans; she was allergic to shellfish, so none of the scans (MRI, CT) could be done with contrast. Since Mary had always thought her mother had died of MS, that was what they were looking at. They also found bone spurs on the vertebrae on her neck, which could have been causing some of the pain, weakness and numbness. Eventually, they sent her for two pulmonary tests a month apart, which led to two EMG tests, and the preliminary diagnosis of ALS.
The ALS neurologist repeated the EMG tests and did extensive blood work and finally convinced Mary to do a spinal tap to rule out other diseases that have similar symptoms such as MS, chronic Lyme disease, heavy metal poisoning, etc. It was about 20 vials of blood.
The only differential diagnosis for ALS is genetic testing, which most insurances do not cover, and would not identify about 90% of cases. For most people, the diagnosis of ALS only comes after absolutely every other possible disease has been ruled out. That is why it takes so long to get a diagnosis.
There simply is not enough funding for ALS research. In most cases, we do not know what causes ALS. In some it is a genetic mutation that runs in families (familial ALS or fALS). In some, it is related to military service and exposure to certain types of chemical warfare – a high number of Vietnam and Gulf War vets experience degenerative neurological disorders such as ALS and Parkinson’s.
Please consider donating to ALS research and care through the ALS Association of Oregon and Southwest Washington so that we can continue to work toward advanced diagnostic options and treatments.

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This photo is of Mary speaking at the memorial service for Laura Janedaughter, October 5, 2013. You can see the weight loss in her face and the hunched shoulders. She was diagnosed with ALS two months later.

By bansagart, ago

Caregiving Crisis

As ALS progresses, more and more assistance is needed. First it’s to tie your shoes. Then it’s to brush your hair. Pull up your pants. Get dressed. Stand up. Transfer to a wheelchair. Go to the bathroom. Bathe. Eat. Assist with bodily functions.
Family caregivers are quickly overwhelmed, having to learn the complicated medical care needed and trying to balance their relationship with caregiving. Some people are fortunate to have family members and friends nearby to help with caregiving. We didn’t. We had moved to another state when I was offered a promotion, and the nearest family members and friends were literally 1000 miles away.

Fortunately, thanks to Medicaid and the State of Oregon, Mary was approved for a significant number of caregiving hours, starting with 40 hours a week (so that I could continue to work). Only three months later, six months after diagnosis, that was bumped to 15 hours a day, 7 days a week, because of how rapidly the ALS progressed. It often took two people to put her in bed or get her up in the morning, making sure that her breathing wasn’t compromised, that her fragile neck was supported, that she wasn’t injured and neither were we.

There is a nationwide severe lack of caregiving agencies willing to take on a patient with ALS. It is critical that the agency have “nurse delegation”, meaning that an RN has to be willing to train and put their license on the line so that a CNA or other caregiver can administer medication, clean the stoma for the feeding tube or trach, put formula in the feeding tube, know how to use the various medical equipment needed, from a bipap to a Trilogy to a Cough Assist.

When you add in living in a rural area (not even an hour from Portland), our options for caregiving agencies diminished to one. ONE agency willing to do nurse delegation and provide caregivers to our home. More than once, we got caregivers that I had to fire after one day, or one hour, because they had no idea what they were doing, or because they felt the need to try to share their religion and convert Mary, or because they fell asleep on the couch and didn’t hear Mary asking for help. Several times, I showed up at the agency’s office to meet with the manager and file formal complaints about their staff.

Finally, we got a team of 3 or 4 good caregivers. That lasted a couple of months before one decided the disease had progressed to a place they were no longer comfortable with, and one other was pulled off of Mary’s team because their attitude changed. There were days I couldn’t go to work because a caregiver called out sick and there was no backup, despite the fact that I was constantly requesting that they have five people on Mary’s team to cover those situations. On those days, Mary often had to stay in bed because it took two people to safely move her to her wheelchair.

We had one consistent caregiver that I could trust with Mary’s life, that Mary absolutely loved, who had previous experience with ALS and was quick to learn and adapt to the disease progression. ONE caregiver. And me.

For those whose insurance doesn’t cover outside caregivers, the annual bill for caregivers can be over $200,000 out of pocket. Medicaid allowed Mary to stay home longer by providing outside caregivers so that I could continue to work to keep our home. Without Medicaid, I would have had to quit my job to care for her, which would have quickly made both of us homeless. And that is just the cost for caregivers; it doesn’t include the cost of medical care and equipment.

There is a reason ALS is called “The Bankruptcy Disease”.

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By bansagart, ago

The first time

The first time Mary almost died was January 2014, only a month after diagnosis. We hadn’t told anyone yet about her diagnosis. She had started using a bipap to help support her breathing but wasn’t completely dependent on it. We did not have caregivers in place – we didn’t realize she needed them yet – and I was at work. At about 3pm, she left the bipap in the living room and went to the master bathroom. Getting up from the toilet, she fell. She didn’t injure herself, but she couldn’t get back up off the floor. An hour later, she had managed to slowly butt-scoot her way to the dresser (about 15 feet away) while struggling to breathe, and used her cane to hook her fanny pack off the dresser. Inside the fanny pack was a deactivated cell phone. On the verge of passing out from lack of oxygen, she managed to dial 911. When the paramedics and sheriff arrived, the sheriff had to kick in the door since she always kept it locked when she was home alone. The paramedics carried her to the living room and put the bipap on her, staying with her until her pulse ox was back up to normal range. A little after 5, I called to let her know I was on my way home (like I had done every single day for 10 years), she started with “I’m ok, but we need to get the door fixed”. That was when I realized how quickly things were going to change. I called a neighbor who came right over and fixed the door. The bipap made its new home on the seat of the walker, and I attached it to a 50-foot extension cord so it could move around the house with her. No more going to the bathroom without the bipap. Go to the nearest bathroom, not the one you like the best. Use the walker, not the cane. Always keep your cell phone on you. I began to wonder how to keep her safe while I kept working so that we had a place to live, and I realized whether she wanted to or not, it was time to tell them family.

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By bansagart, ago

Why I’m doing a daily post

Yes, I am going to post a lot about ALS, about Mary’s journey, about my journey. It is a story that needs to be told. It does not mean I am dwelling on anything, or stuck in a particular place. You do not need to worry about me. I am sharing my story this month, openly and frankly, in public posts, in the hopes that it will help to educate people about ALS and how the disease is different for everyone. Yes, some of my posts will be hard to read. Yes, you can share my posts. And if you do not want to read them, I get it. I wish I hadn’t lived them. But I did. Nothing will change that. I promised Mary that when she was gone, I would help everyone else. This is just a part of what that looks like.

By bansagart, ago

The news

ALS: Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s Disease aka Motor Neuron Disease. In 90% of cases, there is no identifiable cause. About 10% of cases are familial, or genetic, in origin. I didn’t know a whole lot about ALS – except that it was fatal – before October 2013, when we began to suspect that what Mary had was not MS after all. Our worst fears were realized that Friday night in December when the phone rang and the doctor said, “It’s ALS.” It was confirmed by a second neurologist on December 19, 2013. We were told she would have two to five years. But that was before we realized it was respiratory onset, which meant that the nerves that died first were the ones controlling her diaphragm and allowing her to breathe. Respiratory onset only occurs in about 1% of ALS patients (PALS). Mary thought being rare meant she had a better chance; I knew it shortened her life span. I really didn’t understand what the next 22 months would bring, and it’s probably a good thing I didn’t.

By bansagart, ago