Family and Friends

ALS Life: Guest Post from Leslie Bright McKinney

You often hear me reference ALS life versus real life. The reality is I’m living in both worlds. The “real” world involves chatting with Forrest, trying to decide what to have for dinner, managing the needs of the girls, changing sheets, playing games, spending time with friends/family and reading books. ALS life means helping Forrest manage his basic needs, scratching itches that can no longer be reached, being a voice that is no longer there or sometimes takes too long to articulate through his app. It means dressing changes, administering IV medication, catheter changes, refills of water, flushing picc lines, opening containers, adjusting clothes that have shifted and prepping medication.

ALS life also means thoughts about death are always on the periphery. Death is a constant companion when someone is diagnosed with ALS. You know that no one has ever been miraculously healed from ALS or gone into remission. You hear the statistic that the lifespan of someone with ALS is 3-5 years from onset and you wonder where your loved one will be on that spectrum. Or will you be lucky and your PALS (person with ALS) will go the Stephen Hawking route and defy all odds. Either way, your thoughts are never far from weighing those possibilities. Will it be quick and merciful? Will it be long but arduous? Or will you be lucky and find a peaceful middle place. Will we have time to prepare, will we get to say goodbye, will we have done everything we can to feel resolved?

I am in an online support group. It has been a lifeline for me since I found it. I have learned survival and adaptation skills in that group. They are in the trenches and collectively have more wisdom than a team of doctors could ever hope to have. We release our pain, vent frustrations, and share the gross/humorous/ridiculous realities of being a caregiver. It is simply amazing. But the realities of this disease are ever present. In a 24 hour period we had four PALS die not too long ago. There are currently 680 members in our group; many of those are people whose PALS have died but they have stayed in the group to offer their wisdom in support. Since January, over 40 of our PALS have died. Some of those were expected, and maybe even planned, and some were completely out of the blue. Some are peaceful and even joyful, and some are horrific and the stuff of nightmares. Some were less than a year after diagnosis. Some days it just feels like too much.

For our family, having someone who has ALS also means having hard conversations with our children and handling their hard questions and astute observations about death and dying. We have fully shared with them the realities of this disease. They know ALS is not something that goes away or that you recover from. They talk about missing his voice and ask when he might die and what that may be like. The last week of school Violette lovingly and so sweetly asked Forrest “you have the really bad ALS, don’t you?” Forrest nodded and gave her the thumbs up. She hugged him and as we were walking out to go to school she said, “mama if daddy dies while I’m at school, would you please get a note to my teacher?” The other day Sophie was talking about being an adult and made the comment that daddy wouldn’t be there. These are gut punching exchanges.

Some of the hardest conversations I have ever had are talking to my children about death and dying. But these are also some of my most proud conversations. When they talk about death as part of a bigger reality of our lives I know they are processing and reconciling that grief along the way and in a healthy way. They are sad, but they are honest and speak freely. And sometimes they start talking about TV or snacks two minutes after talking about death. We will all be devastated when that time comes, but they will not be blindsided by the reality.

ALS is so hard. And every day it gets harder. And shockingly we are no closer today to a cure or cause than we were 150 years ago, when it was first found, or 80 years ago when Lou Gerhig was diagnosed. You would think a disease that is considered most people’s worst case scenario would be farther along in research and the development of treatments.

By bansagart, ago

Caregiver Journal – June 15, 2014

Mary is still using the BiPap/AVAPS (non-invasive ventilator) 24/7 in order to breathe, and a Cough Assist machine to help keep her lungs clear since her respiratory muscles are so weak (her NIF is -8; normal is -80).

She had a feeding tube (PEG) placed on April 2 proactively; at the time she did not need it as she was still eating normally, but we were concerned that her impaired breathing would make anesthesia more dangerous if we waited. In the past couple of weeks, she has had some occasions where she has aspirated small pieces of food (which the Cough Assist was able to clear), so we are looking at changing her diet to more of a soft food and liquid diet, and beginning to use formula in her feeding tube. She has also lost a total of 45 pounds since last summer, so she is on a high-carb, high -protein diet.

Her left side has continued to atrophy and she is no longer able to walk on her own or stand for more than a few seconds. She is wearing a neck brace 24/7 to keep her head upright and minimize the trigeminal nerve pain that she gets due to the muscle loss in her back, neck and head. She is using  power wheelchair to get around, and we use a lift to transfer her into bed at night since she cannot get into our current bed. We are waiting for an adjustable bed to be delivered, that we hope will help her sleep better, since she also can’t reposition herself in bed.

We currently have home health services about 40 hours a week, and she is being reassessed tomorrow in the hopes that we can get additional home health services. We have had some issues with some of the caregivers and visiting nurses, and have had to fight to make some personnel changes, but we are hopeful that the current professionals will work out longer term.

She isn’t able to leave home unless a wheelchair van can come and get her. When my parents were here two weeks ago I was able to rent a wheelchair van for a couple of days. We made a trip to a local nursery and then a trip to the Evergreen Air and Space Museum with my parents. Not having easy transportation access is the one drawback of living so far out in the country.

We have been blessed by visits from Callista and Allejandro and Elfkat. We are looking forward to a visit from Elfkat and Diana over  the Fourth of July  weekend.

Despite the rapid changes and challenges and questions and decisions the future holds, Mary is doing her best to stay in a positive frame of mind. She is enjoying watching the hummingbirds come to the feeder outside the living room window, and gets outside when the weather permits (and chases the caregivers were around with her wheelchair!). She is looking forward to the fresh foods from our garden (planting is an ongoing project since I have minimal time to spend in the garden).

Please continue to send Reiki, positive energy and thoughts for both of us. And if you are so inclined, please support the ALS Association in bringing awareness and helping to find a treatment and someday a cure.

By bansagart, ago

The Human Connection

One of the most common issues I hear about from other caregivers (CALS) of people with ALS (PALS) is that friends and family disappear, leaving them to live through this hell alone. I have heard about parents who stop visiting or even calling, of siblings that refuse to answer the phone, of children who refuse to help out, of people who say “let me know if you need anything” but who are not there when you need them.

We had been in our new home for less than 18 months when Mary was diagnosed. In that time, we had developed a close friendship with a neighbor – we spent several nights a week together having dinner, drinks, talking smack. We had helped each other out with projects and with difficult life events.

Soon after Mary was diagnosed, this neighbor helped immensely by repairing the door that the sheriff had kicked in the first time Mary fell and was alone. They made and installed a ramp for the one step on our ground floor, allowing Mary to maneuver her power wheelchair from the entrance and master bedroom to the rest of the house.

Then they stopped answering my calls and texts. They stopped waving at me or even looking at me when I drove past. Mary would ask me to contact them and ask for something, and there would be no answer. It broke my heart. It made me beyond angry. This person knew that we had no family or close friends in the area, that there was no one else nearby to help or visit. They never checked in when the fire department came by in the middle of the night.

A childhood friend of Mary’s refused to come down and visit, saying, “I want to remember Mary as she was.” How nice to have that luxury, to use that excuse not to give her the human connection she craved.

I know it is fear that kept these and others away. Please look beyond your fear and think about the person with a terminal illness and the ones taking care of them. They need you. They need “normal” to visit once in a while. PALS need to reminisce. CALS need someone trusted to talk to about their fears and struggles. PALS need you to sit with them for an hour or two so their CALS can take a nap, or a shower, or go to the grocery store. They need you to mow the lawn, bring a cooked meal, take out the garbage because they cannot leave their PALS alone.

The Human Connection. It is Everything.

By bansagart, ago

Why I Share

Over the past month, I have shared information about ALS as well as my and Mary’s story. I wish I knew what Mary had thought/felt during her journey with ALS, but she didn’t share that with me, so I have shared my part of the story. What I have shared has been shocking and heart-wrenching to many of you, yet I have not shared everything. I have not shared the month from hell when she decided to get the trach or the weeks after that. I have not shared the futile struggle to find her a place to live outside of the hospital after she was trached. I have not shared the last month of her life. Those stories will be told another time.
 
My purpose for sharing has not been to shock or cause pain or fear. I have shared in order to raise awareness. ALS is not what Hollywood wants to show you. It is not pretty. It is an ugly, evil disease that steals everything and leaves scars on those left behind, scars that may never completely heal. What I have shared is the reality that I experienced.
 
If you know someone affected by ALS, whether they are a PALS, CALS, friend or family member, now you have a glimpse of their daily lives. Reach out to support them, bring food, give the CALS a break for an hour so they can take a shower, stop by with a puppy, kitten or bunny. Just reach out. It is almost impossible to ask for help while living through ALS. Volunteer or donate to a reputable organization that supports people living through ALS.
 
Today it has been 19 months since Mary crossed to the Summerlands. I promised her that when she was done fighting, I would fight for everyone else. This months’ posts have been one way I continue to do that.
 
Mary’s journey with ALS was the worst 22 months of my life. The last month of her life was hell. She lost the battle with ALS. But in the end, ALS will not win. Love will win.
 
Love always wins.
By bansagart, ago

Grasping at Straws

I mentioned in a previous post that Mary put off telling people about her diagnosis. And the ones she did tell, she kept in the dark about how much and how quickly the disease had progressed. People would call that she hadn’t Image may contain: 1 person, sunglasses and hatspoken to in a while, and hear her “nasally” voice and ask if she was ok. “Oh, it’s just a cold. I’m fine.” Those were the ones she didn’t tell about the ALS. Others would call and ask how she was doing. “I’m doing GREAT!” she would tell them, not telling them she could no longer hold the phone and that the caregiver had just placed a headset on her, plugged it into the phone, set it on her lap and pressed the answer key for her.

Her reason was that she couldn’t allow herself to get caught up in the negative, that she needed to live in the moment and not think about the future. I would argue that she did need to think about the future so we could make plans for her care. It wasn’t until later that I realized she truly believed she was going to beat this disease. She was researching unconventional treatments, pouring through articles about how certain strains of marijuana cured cancer and ALS, so she started growing a marijuana plant to make into tinctures to take. Not that she actually used any of the marijuana, despite arguing with doctors about getting a medical marijuana card. She read about someone in Israel being cured of ALS by stem cell therapy, and swore she would live long enough to receive that treatment. When I read the article, I wasn’t convinced the single test subject had actually had ALS.

This is not uncommon for ALS patients. There are all kinds of ads and offers of “we’ve cured ALS” with bee venom therapy, paleo diets, crystal therapy, essential oils, marijuana, secret herbs of the Amazon or Africa. They all come with a very high price tag. It is heartbreaking to watch people recently diagnosed as they grasp at any potential treatment or cure, as if no one else has ever tried it, as if it had ever truly worked. Because if it truly did work, we would be telling everyone about it! It creates false hope, drains bank accounts, and causes rifts in families. And the predators walk away with thousands and thousands of dollars.

What we need are real treatment options, real medications that have been tested, real diagnostic tests, a real cure. It is often said that ALS is not incurable – it is underfunded. Even with promising research being done around the world, the funding is not there to support ongoing research, or new research projects. Please consider donating to support the work, through sponsoring an ALS Walk or other fundraising event, large or small. You can make a donation through purchasing a product, such as with my daughter’s “Jams for ALS” fundraiser . You can make a direct donation to the ALS Association. Help spread awareness about ALS, what it is and what it does, and what you can do to help those living with ALS.

By bansagart, ago

Broken and Shattered

I had very little knowledge of ALS before Mary was diagnosed.

I did know it was 100% fatal but I had no idea how much damage it could do before killing you.

Now that I know more than anyone should, every time I see or hear of someone being diagnosed, it breaks my heart. When it is someone I already know and count as a friend, it is even more heartbreaking.

My broken heart shatters each time I hear that a friend has died. In the last 10 days, two people in my circle, my ALS community, have died. Despite living with an ALS diagnosis for 4 and 10 years, both took sudden turns that claimed them quickly. They have left behind people who were my rocks while Mary was sick, while she was in the hospital, when she died and since that day.

Each loss tears the scab off of my own ALS battle wounds. Each loss brings me back to Mary’s journey, her final days, her last day, and the intense depth of grief that knocked me flat. And I know what my friends are feeling: the shock, the anger, the disbelief, the surreal and intense roller coaster of loss and grief.

Knowing the diagnosis does not make it any easier. Knowing that this round of pneumonia, this urinary tract infection could kill them does not make it easier. Platitudes do not help. “They’re in a better place now” doesn’t help. “They aren’t suffering anymore” doesn’t help. All you know is that the ALS bullet train has just derailed, that life as you have known it over the last 6 months, year, five years, ten years, has changed in a second. Who you are has changed in a moment. Your life will never be the same, the scars will always be there, the loss will always sting.

Someday, there will be an effective treatment. Someday, there will be a cure. Someday is not soon enough. Someday is too late for too many people.

So today, my heart is shattered again, and I reach down to gingerly pick up the pieces and try to put my Heart, my Self, back together again, knowing that once again it is different than it was a moment ago.

By bansagart, ago

10 Months In

I wrote the following in the summer of 2014 for the newsletter of the ALS Association of Oregon and SW Washington, a segment called “Caregiver’s Voice”.

Image may contain: one or more people, people standing, ocean, outdoor and water

My partner Mary DeWitt and I met in the fall of 1996 in an AOL chat room, where we quickly became friends. We chatted off and on via email and the phone, then lost contact for several years. In 2003, Mary tracked me down, we started talking again, and finally realized that our paths were meant to be intertwined in a deeper way. She moved to Long Beach, California where I was living, and my three nearly-grown kids soon adopted her as “SuperMom”. In November of 2007 a job opportunity opened up for me in the Portland area and we made the move. Mary was thrilled to be back in the Pacific Northwest where she had been raised, and we both loved living close to a nature center, where we could walk together in the woods. In July 2012, we were able to find a rural home on two acres and started to work on our plans to turn it into our dream place when things came to a screeching halt.

Mary had been diagnosed with fibromyalgia in 1997, and with rheumatoid arthritis in 2005. When she started developing more fatigue, muscle weakness and joint pain, we attributed the symptoms to those diseases. Then other symptoms started to crop up that didn’t fit with either of those diagnoses: increased memory fog, shortness of breath, muscle spasms, and large numb patches on her back. Her brother had just been diagnosed with MS, and since she had always thought her mother had died from MS complications (in 1969), she was referred to a neurologist for testing. It was nearly a year before MS was ruled out, and by then her headaches, weight loss, shortness of breath and leg/arm weakness were much more pronounced. She was diagnosed with Motor Neuron Disease/ALS in December 2013. Even though we both had known that was a possibility, the diagnosis was devastating. We tried to keep a positive outlook, and admittedly Mary has done a much better job of that than I have. In the last ten months, Mary has gone from walking with a cane to being unable to bear any weight on her legs. She uses an AVAPS 24/7, spends her days in a power wheelchair, and gets the majority of her nutritional needs met via a feeding tube; now we are looking at communication options as she begins to lose strength in her voice.

Having no family or friends nearby has been challenging; everyone is in another state. We have been fortunate that family members and some friends have been able to come and visit over the last six months, helping out where they can and providing emotional support and comic relief.

For Mary, these last 10 months have meant an incredible amount of change, forcing her to develop trust in the midst of vulnerability, of literally putting her life in the hands of agency caregivers every day so that I can continue to work and keep our home. For me, it has been a constant fight to keep myself together while I go head to head with bureaucrats, ignorance and arrogance to get her the services and support she needs. We have been through quite a few caregivers and home health nurses who could not keep up with the changes or who thought they knew what was best without listening to Mary and observing her changing needs.

I have found the monthly Caregivers’ Support Group to be an incredible source of strength and knowledge for me. It was hard to walk in the first time, but I was immediately welcomed and learned so much that I attend as often as possible. All of our PALS progress at different rates and patterns, and have different needs; sometimes you are asking questions, and sometimes you find you are the one with the answers. If you are a caregiver, and you haven’t yet been able to attend a Caregivers’ Support Group meeting, I strongly encourage you to attend at least two or three times before deciding if it is the right place for you. On a more daily basis, I have found my support in a Facebook group for caregivers where we ask questions, vent frustrations, gain tools to advocate for our PALS and share the joys.

The staff of the ALS Association of Oregon and Southwest Washington have been amazing to us as well. The emotional support and advocacy available by email and phone are incredibly helpful, and the equipment loan closet has been critical as Mary’s equipment requests make their way through weeks or months of bureaucracy. And we can’t say enough about the staff at the Providence ALS Center who are guiding us through this journey and supporting whatever needs arise. Our families and friends took on the Ice Bucket Challenge and made their donations to the Oregon/SW Washington chapter, knowing that they were helping us and others in our community even though they can’t be physically here to support us as we all wish they could.Image may contain: 2 people, outdoor

I am trying to walk this journey one day at a time, and although I am not always successful, I continue to strive for what balance I can find. I am trying to find ways to take care of myself in the midst of constant change. I am trying to trust that something bigger than myself is supporting me, and will continue to support me as we walk this journey together.

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