FTD

ALS Awareness Month 2021

May is ALS Awareness Month. It is also Mental Health Awareness Month.


You might think the two don’t go together, but you would be wrong. An ALS diagnosis is a mental health crisis not only for the person diagnosed, but also for their loved ones. Depression and anxiety, anticipatory grief, helplessness and hopelessness can lead to suicide, and not the physician-assisted kind. It can lead to physical, emotional, mental and financial abuse not only to the patient, but from the patient to their loved ones. In some people with ALS, those behaviors were already there but are now exacerbated. Other people with ALS develop Frontal Temporal Lobe Dementia (FTD), which causes extreme paranoia, hallucinations, a break from reality, loss of memory.
And when the patient has died, their loved ones are left not only with grief, but often complicated grief and post-traumatic stress disorder, both of which are often overlooked and labeled as “grief” but left untreated can lead to extreme anxiety, depression, isolation, self-abuse, drug and alcohol abuse and suicide.
To the medical community: ALS patients and their loved ones need mental health care, not just medication for anxiety and depression.
To the ALS community: Fight for what you need. Yes, medication may be necessary, but therapy and spiritual counseling are also important.
To my fellow widows/widowers: We know this. We continue to fight the dragon every single day, no matter how many years it has been. Talk to someone. Reach out. We have to help each other because no one else can possibly understand – and we hope they never will.

By bansagart, ago

Caregiver Journal – the Care Plan

Journal entry by Denise Allen — 

Update on Mary’s care plan: The hospitalist called yesterday morning to let me know that they suspected she has another UTI. They had changed out her catheter, and are waiting for the cultures to come back today before determining treatment due to her multiple allergies/sensitivities. She also let me know they were planning to do a chest x-ray, so I was able to share with her a method to do that most easily without injury to anyone (use the draw sheet to pull Mary forward, then slide the film between the bed and the draw sheet).
I walked into the hospital last night to find these posted in her room. The nurses actually were following the schedule, and talked with me about clarifications and adjustments. I didn’t have to yell at anyone, and I actually wasn’t stressed out when I left! I wish we had set up a Care Plan within the first few days; it might have avoided a lot of issues.
Here is the care plan as it stands. I am sharing this in case anyone else faces something similar so that you have an idea of what to ask for.
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

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

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