bansagart

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

Life as a Caregiver – a look back to May 4, 2014

Over the past year, Mary’s health has been changing and declining, with symptoms that could not be explained by the fibromyalgia and rheumatoid arthritis she had already been diagnosed with. Last fall, we were suspecting that she might have MS. We spent several months with lots of doctors’ appointments and tests. The MS tests and most other tests came back negative, but the EMG tests showed that she has a motor neuron disease known as amyotrophic lateral sclerosis (ALS aka Lou Gehrig’s Disease). This is a degenerative disease that causes the nerves running from her brain to various muscles in the body to die and the muscles to atrophy. Mostly the muscles affected have been her left side: leg, torso, diaphragm, arm/hand, and neck. She is being seen at the ALS Clinic in Portland, where they have an amazing team of specialists.

Her muscle atrophy has progressed to the point that she is now using a power wheelchair to get around. She is also using a neck brace since the muscles on the left side of her neck are atrophying. She is having to learn to do things right-handed, which is a challenge. Because her diaphragm is affected, her breathing has been compromised and she is using an AVAPS machine 24/7 as a non-invasive ventilator. She recently had surgery to get a PEG (feeding tube) – which she does not yet need since she is still able to eat normally; but we were concerned about waiting for the surgery due to the dangers of anesthesia with her compromised lung function. Fortunately, she was approved for 40 hours a week of in-home health care, so that I can continue to work without worrying about her safety. Right now, she is doing as well as she can be.
I will try to keep you updated, but with the care she needs, it is difficult for me to keep up with everyone. Phone calls are difficult, but please feel free to email me any time, and I will answer the best I can.
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

Snippets

She sleeps
I watch
Her jaw relaxed, her brow relaxed
I kissed her when I came in
She didn’t stir
 
She sleeps to the hiss-hiss of the ventilator
the whirr-whirr of the Kangaroo pump
the shhhhh-rrrrrr-shhhhhh of the air mattress
The sounds of hospital staff on the other side of the door
have become her lullaby
 
A knock
A nurse
“Time to be turned, Mary”
 
“Hi” she smiles
I ask “Are you happy to see me?”
“Of course I am” she mouths
We pull her up the bed
put pillows under the other hip
the catheter leaked on the chux
it will be bath time soon
 
Housekeeping comes in
I wipe the sleep from her eyes and she drifts off again
 
Penny took Sheldon to Disneyland
“I never go to go to Disneyland”
No, you didnt, My Love
And I am sorry
We didn’t make time for that
© 2015 Denise M Allen
By bansagart, ago

FTD

Frontotemporal dementia. The frontotemporal lobe is the “thinking part of the brain”, the part that regulates executive function, decision-making, forethought and speech and communication. In about half of people with ALS, there can be changes to this part of the brain, but many actions, reactions and behaviors are chalked up to “the normal anxiety of a terminal diagnosis”. Some studies show that in about a quarter of ALS patients, the brain changes can be significant enough to warrant a diagnosis of dementia, specifically FTD. Mary’s neurologist once told me that she believed all ALS patients will develop FTD if they live long enough.

Soon after Mary’s diagnosis, I learned about FTD from other caregivers, and started to keep an eye out for changes in Mary’s behavior. Because the changes were so subtle at first, and the physical disease progression so fast, I missed the early signs. She picked arguments with me. She didn’t want to hear about how I felt about anything. She refused to make decisions. She would get easily angry at the littlest things. Any discussion about the future was met with “I have to live in the moment”, which ending up leaving me to make her decisions for her once she could no longer communicate. Despite an insane amount of anxiety, she refused to take any anti-anxiety meds. Despite her high level of pain, she refused to take any pain meds until she was almost locked in, and even then, at least when she was still at home, she would dictate the dosage, which was often well below what the prescription was written for. She had to watch you fill the meds, fill the formula – she didn’t trust anyone not to poison her. She would tell me in tears that a caregiver had pinched her, and would refuse to let them back, so I would call the agency and fire the caregiver and beg them to send a new one. She wouldn’t let me trigger the Power of Attorney even though she could no longer sign her name. She accused me of trying to gaslight her. She would tell the Medicaid case worker and the social worker that I needed a break, that “Denise needs to have a life”, but any time I made plans to meet a friend or even go to the garden, there would be a minor crisis and she would get me to stay. I would leave for work, and she would say “How would you feel if I died while you were gone?”

I still didn’t figure out that it was FTD until after she had been trached and vented, and was back in the hospital. She could only communicate by moving her mouth, and I would spend hours lipreading her, unable to figure out what she was saying. I would repeat back what I had seen – complete word salad nonsense – and she would emphatically agree that was what she had said. I would go to visit her after work, and she would be furious that one of the nursing students was treating her like a baby. When I would try to leave to go home, she would tell me to lock the window so that the “bad people” couldn’t get in – I had to show her that it was locked with a screw lock. She would tell me to have the nurses tie her down so that she wouldn’t wander around, and I would have to tell her that she hadn’t been able to walk for over a year. She would complain that the nurses wouldn’t let her go to the bathroom – and I had to tell her she was paralyzed. Then she would look shocked and ask, “why?” and I would explain to her again and again that she had ALS, that she was breathing on a ventilator, that the place she thought was her bedroom was the hospital room she had been living in for months. Telling her again that she had ALS became an almost daily occurrence.

At the end of May 2015, I finally called the ALS Neurologist and told her I suspected Mary had FTD. She met me at the hospital one Saturday morning, and with me interpreting (most people couldn’t read her lips), she asked Mary the basic questions to determine if she was “oriented” in time and place. Mary knew what year it was, who the president was, that she was in the hospital in Portland. She answered everything correctly. The doctor looked at me like “why would you think she has FTD?” I dipped my head at her, turned back to Mary and asked, “Mary, WHY are you in the hospital?” She looked back and forth at us, completely perplexed, and hesitantly answered, “Drug overdose?” The doctor’s eyes got very round, and she agreed to the FTD diagnosis. I quickly got the letter stating that Mary was no longer of sound mind to make her own decisions, and I activated the Power of Attorney. That was one of the hardest things I ever had to do.

Over the next several months, the FTD got worse. Some days, she wouldn’t know who I was. Some days, my phone would ring at 2am because she was in a panic and the nurses couldn’t figure out why. I would Skype with her and translate, and about 45 minutes later I would realize that the TV was on the “relaxation” channel and she was afraid she would drown in the waterfall and ocean waves on the screen. She had lost her sense of reality. For the rest of her life, her sense of reality would appear in short glimpses, but mostly the Mary I had known was no longer there.

By bansagart, ago

When You Can’t Speak Anymore

Because she was respiratory onset, Mary did not lose the ability to speak early in her ALS journey, like those with bulbar onset do. She had decided to do “voice-banking”, using a program to record her own voice so that it could later be programmed into a speech generation device. She got all the equipment and software she needed….then didn’t record a single word. I think because she had had such an amazing voice, had been such an amazing singer, she wasn’t happy with how she sounded. I don’t think she understood that it was just going to get worse. Or how much it would have meant to have her voice recorded.
 
Ten months after diagnosis, her hands were nearly non-functional. I started a fundraiser to purchase an eye-gaze communication device for her. At the time, Medicaid/Medicare would only cover a locked device, which meant she would not be able to use it for any internet access. Since that was how she communicated with people, most of whom lived at least three hours away, we decided not to use Medicaid. She got a grant from ALS Guardian Angels, friends and family donated money, and I paid for the rest of it out of pocket: a Tobii EyeMobile and a Windows 8 tablet with Dynavox software. The Adaptive Communication Specialist came out to the house to calibrate it to Mary’s vision. We couldn’t quite get it right, we thought because of her glasses, or the lighting in the house, but we were sure with practice she would be able to get it down. She was also only the second person in the area to have the new EyeMobile, and they were still working out the bugs. I was nearly in tears, with joy, that she would be able to be online again, to text her friends, that she would have a way to communicate when her weakening voice was gone. But she didn’t practice. It sat in the box. The ALS Association loaned her a more traditional Tobii I-15 and we tried to calibrate that to her eyes. It worked a little better, but it still sat in the corner. I’m not entirely sure why.

 
When she could no longer speak because of the trach, I took the Tobii to the hospital. We couldn’t get it to recognize her eye gaze. The hospital Speech and Language Pathologist tried to get it working. I demanded they bring the Adaptive Communication Specialist in from another one of their hospitals to work with her, which they did for a couple of weeks, and then “budget cuts” got in the way. We snuck the Adaptive Communication Specialist into the hospital as a “visitor” to try to make adjustments. We would get it working, then a nurse or CNA would move the stand, and then it wouldn’t recognize her eye gaze again. We finally figured out that she was having fasciculations in her eye muscles, so that her eye gaze did not hold long enough for the machine to recognize it.
 
People think that ALS won’t affect the eye muscles. They say that about a lot of muscles. The thing is that yes, ALS affects the voluntary muscles. But every muscle that you can learn to control can be affected. You can learn to hold your breath; breathing is affected. You can learn to hold your bladder and bowels; your sphincters are affected. You can learn to direct your eye gaze and focus your vision to different distances; your eye muscles are affected.
 
When you can’t type, or write, or speak, when you can’t move your hands or fingers, when the one tool you thought you would be able to use to communicate is taken away, how do you express your needs? Your fears? Pain? How do you call a nurse? How do you share what you are thinking or feeling? How do you tell someone that you love them?
By bansagart, ago

A Van Ride From Hell

At the end of December 2014, Mary was having a hard time with hot flashes. Since she was unable to cool herself off by moving sheets or fanning herself, she wanted to get a patch. Her regular doctor wouldn’t prescribe it without seeing her, so Mary had to go in for an appointment. I met her and the caregiver at the doctor’s office, then saw her onto the van and headed back to work.

The wheelchair van was provided by the local ambulance company, so you would think they would be a little cautious when they see someone in a power wheelchair, with a caregiver, a face mask for a Trilogy, a heavy-duty neck brace and head supports that go across the top of the head and lock in place in front of the temples. But apparently, the driver didn’t lock her wheelchair down tight enough, so her chair and head got bounced around – enough that her head supports got knocked out of place. She ended up trying to yell at the driver and caregiver to stop, but they couldn’t hear her. Not only were her neck muscles completely gone by that point, but she had bone spurs in her neck, so if her neck brace hadn’t been tight enough or if the chair had been a little looser, that ride would literally have broken her neck.

When they stopped at the house, she had tears rolling down her face and explained what happened. The driver didn’t even apologize.

She ended up with a mild concussion and whiplash, stuck in bed for several days.

I was furious that I couldn’t protect her from so-called professionals. I called the ambulance company and filed a formal complaint. The driver was fired.

As you can imagine, this experience severely increased her anxiety about going anywhere after that. She only made one more trip in a wheelchair van, and that was with me sitting next to her to make sure everything was ok.

By bansagart, ago

To Trach or Not To Trach

Once ALS progresses enough, Clinic days do not offer enough time with the neurologist or pulmonologist, so often patients have to pack up and head in to another appointment.
 
That means that in addition to the usual morning routine that could take two hours to get Mary up and settled into her power wheelchair for the day, we had to pack her feeding pump and charger, formula, urinal, baby wipes, depends, pain meds, bipap with charger and back up battery, and load her into a medical wheelchair transport van for the 1 to 1.5 hour drive into Portland. All the while, hoping that nothing went wrong with the bipap power.
 
We didn’t have enough time with the neurologist or pulmonologist at clinic in November 2014, so we had another appointment in December, 12 months after her initial diagnosis. The “to trach or not to trach” debate continued. I hated that conversation, I hated that we even had to have it, and keep having it, for months on end.
 
At that appointment, they told Mary that if she had a trach, it could be 4 to 6 weeks before she could go home IF she was able to go home at all. Apparently only about 30% of PALS that go the trach route are able to actually go home and not to some type of facility. Mary was already respirator dependent (and had been for at least 6 months). At this particular appointment, Mary said that she wanted to live long enough to have stem cell treatment. I was stunned speechless. So was the neurologist. Mary had never said that before. There had been ONE patient in Israel who had shown improvement after stem cell treatment, and the results had not been duplicated. My thoughts that day, after my initial shock at her reason were “How realistic is that? How long until it’s available in the US, and will she even be a candidate?”
 
The doctors were trying to encourage her to make a decision because they were worried that it might have to be done as an emergency rather than planned, that it might be done in a hospital that didn’t understand ALS instead of at the hospital next to the clinic. They offered to try to connect her with more patients with trachs, and with someone who took care of a person who wasn’t happy with it. Mary wanted as much information as she could get before making a decision.
 
Knowing what I knew then, if it had been me in that condition, I believed I would say no to a trach. Knowing what I know now, I absolutely would say no. I was terrified she would say yes. The doctors both told her that if anyone could make it, she could. They both implied they were surprised she was still alive, let alone still talking, a year after diagnosis and with her rapid progression. She was so positive about all of this, when all I wanted to do was hide somewhere and cry.
 
If she were to say yes, the biggest barrier to bringing her home afterwards would be finding 24/7 caregivers. We couldn’t keep caregivers as it was, and a trach and ventilator would definitely limit our options of qualified caregivers and agencies willing to provide them. There was no way I could do it all. I couldn’t quit my job to take care of her. I already wasn’t getting any sleep. She never did really understand all of that.
 
She emailed with a couple of local people with trachs. The people who aren’t happy with the decision to trach typically don’t want to talk to anyone or share their experiences, so she never did hear about the ones who weren’t happy. And she still didn’t make the decision, leaving her options open and me in a perpetual state of dread and fear.
By bansagart, ago