ALS, Amyotrophic Lateral Sclerosis, is a terminal disease. As with any diagnosis of a terminal disease anticipatory grief begins at the get go. Sometimes the grief is huge, like a king size, unmade, bed with the sheets, blankets, and pillows all piled high. Sometimes the grief is hidden, like under a smoothly made bed that when the covers are pulled back there is just a little wrinkle to the sheets. All the time there is grief, whether it is buried deep inside of us like the material inside a mattress or hanging out for all to see like a messy bed.
Soon, this week or maybe the next, a hospital bed will be delivered for Tom,my guy with ALS. It is a bed that will, hopefully, accommodate his increasing dependence on care, particularly at night. A recent serious infection that went septic accelerated the need for a bed that will assist in preventing pressure sores. It was a hard-fought battle with the VA to get the bed that would be best for a person living with ALS. It is a bed in which a number of veterans have received from various VA’s across the country. It is a battle I lost. Is it the second-best choice of a bed? I do not know. Maybe it will be better than the best bed I know of, requested, and was denied or maybe it will be the worst choice possible. This will reveal itself soon.
In many ways, this moment, right now, if I could, I would hold onto forever. I was angry with myself for giving up the fight for the bed we requested. I could have appealed and that would have potentially delayed the delivery even more so than it is. The bed we wanted has a two-week delivery window. The bed he is getting is an eight to nine weeks process from beginning to end. If I lost the appeal maybe it would late May or June before he got what he so desperately needed. I got myself pretty worked up over haggling with the VA over the hospital bed. I even allowed a friend to get under my skin, and into my feels about it, that to this day I have not spoken with this person. Tom asked me not to appeal. My health was suffering. Little did I know sorrow had a choke hold on me. When the hospital bed arrives sharing a bed together for nearly thirty-nine years departs. Anticipatory grief is a tricky bitch.
“Some people come in our life as blessings. Some come in your life as lessons.” ― Mother Teresa
Teachers are my heroes. They put up with more for less than most other humans in the hope that what they do makes a difference. If I could do it all over again I’d still choose teaching at the tender age of 45 years old. I’m fairly certain my students gave me more life lessons than I ever gave them. Tolerance, acceptance, patience, are just a few of the things that I learned along the way, and sometimes I learned them the hard way.
I had a student years ago who was in one of my civics classes with 12 students in it. He was one of the most annoying kids I had ever met. He was in a lower level class, some had IEP’s and some did not. The ones who did not have an IEP had IQ’s in the range of 90 or so. They all struggled in school forever. By the time I had them in the 10th grade they had built up their defenses, their fuck you’s and up yours to each other were frequent and quiet. They thought I couldn’t hear them. With only 12 in the class they were always in ear shot of me but they never seemed to realize it or maybe they did and that was their challenge to me. To the degree that it was possible I ignored their profanity because if I didn’t I’d have to send them to the office and they wouldn’t have a chance at learning. If I sent them to the office every time I heard a ‘bad’ word I’d have no kids left in the class some days though a time or two it crossed my mind to do just that.
There are times we lose our patience as teachers. We are asked a thousand times the same thing. Or the same student is late, again, and again, to class. As a high school teachers we can have a hundred or more kids we teach every day, five days a week. Some of my colleagues, to help pay the bills, also teach at night. Ninety-nine percent of the time they have amazing patience, and every once in a while they don’t and when they don’t, when they lose it, they take a beating for it either from others or from themselves.
This one most annoying student tended to be rude and disrespectful to me, and to others in the class. He almost never passed a test, never did his homework, blatantly cheated and often nodded off during lessons. It was a first period class. I’d really had it with him, and totally lost my patience with his attitude one day, not a proud moment but a human one. I don’t remember if it was my second or third year of teaching. It was easy to imagine leaving the profession. In fact I daydreamed about it on my hour drive in each day that semester.
With nothing left to lose I changed my teaching style up. I started each class with a question: In the last 24 hours what is something good that happened that you can share with us? No negatives were permitted. After a week or so this teenage boy raised his hand and said his momma bought him his first mattress, his first bed that was up off the floor and he didn’t have to share it with his siblings. Humbling. It wasn’t my last moment like this as a teacher but it was my first. I judged his poor behavior unfairly without taking into consideration that all I knew about him was wrapped up in 90 minutes a day 5 days a week. I knew nothing about his life up until that moment, then I knew all I needed to know.
I share this story not because I did something great for this student, in fact, quite the opposite, it was what I learned from him that was so impactful in my life. Sometimes I forget this lesson and quotes like Mother Theresa’s that I started off this post with remind me of the lesson I learned so long ago.
Who was your lesson in life?
Surviving is important, no doubt about it, without it we have no chance of thriving. Recently, my husband, Tom, that guy who has Amyotrophic Lateral Sclerosis, ALS, went through a difficult illness and surgery. ALS alone is challenging enough, add on sepsis and gallbladder surgery within days of each other after an umbilical hernia repair a month prior to this and you’ve got some serious problems on your hands.
There is a lot to learn hanging around with Tom. He consistently leads the way on living life to the fullest, in whatever capacity that is at any given time. Last week when he was in pre-op he was chatting it up with his surgical team offering to paint them a Van Gogh like painting, actually he said he offered to forge a Van Gogh if they want one. He was 100% accurate in his assessment of himself.
Tom came to painting, or painting came to him, difficult to tell which one it is, a long time ago after he survived a serious brain infection. He could no longer function at full cognitive capacity which meant he was unable to continue working in the insurance industry in New York City. Among other issues he suffers from executive function impairment as a result of the infection. As a young man of 38 years old he refused to allow this to define him for the rest of his life, enter painting. Not just any painting but oils, and with a palette knife. For people with an intact cognition, and a modicum of talent, it would take a few years to be reasonably good. For Tom it has been decades of effort, tenacity, and learning the same thing over and over and over again to be in a place where he can say with confidence, he can paint a good Van Gogh rip off. Long ago he decided because he survived this infection, he owed it to God, to himself, and to his family to be a thriver. To prosper and flourish instead of merely surviving day to day.
After he received a diagnosis of ALS he chose the same path. He joyously rode his motorcycle until he couldn’t anymore. We built a house not far from the beach because that is what we always wanted to do. He continues to paint because he can despite the physical limitations ALS rudely puts on him. Some incorrectly label this therapy for Tom. Painting is life for him. It is how he breathes.
This last round of health challenges imposed a physical toll on Tom. I doubt we will see him sit around with the cloak of surviving wrapped around him. History tells me he will begin thriving anew. I can’t wait to see what emerges.
Van Gogh forge by TWard – 1/12/19
Caregiver setting up weekly medications
Note: the following discussion is in no way related to receiving home health care, unskilled or skilled, by VHA, Veterans Health Administration. This is a discussion on Aid and Attendance as it relates to benefits, VBA, Veterans Benefits Administration.
There is not a VA disability benefit that is specifically aid and attendance. Aid and attendance are part of additional ratings above 100 per cent compensation. Ratings above 100 per cent compensation are known as Special Monthly Compensation, SMC. The amount of aid and attendance awarded in SMC depends on the documented need of the veteran.
The SMC schedule has 11 different levels, all the levels are letters, such as L, L1/2, M, M1/2, N, N1/2, O/P, R.1, R.2, S, and T. The compensation goes up accordingly. The highest compensation rating is R2. To be rated R2 the veteran must be in need of regular aid and attendance and, additionally, in the need of personal health-care services provided on a daily basis in the veteran’s home by a person who is licensed to provide such services or who provides services under the regular supervision of a licensed health-care professional. The difference between R1 and R2: R1 the veteran requires, unskilled, regular aid and attendance. R2 the veteran requires the R1 criteria and skilled care in the home without otherwise the veteran would need to be in a long-term care facility.
Aid and Attendance is a medical rating and additional amounts of money available with all VA disability income benefit levels to help individuals receiving these benefits cope with the added burden of helplessness. The additional amounts of money require a Rating Veterans Service Officer in the Regional Office to establish the need and issue a rating. A Rating Veterans Service Officer is an employee with the Veterans Benefits Administration.
Criteria for the Need for Aid and Attendance
38 CFR 3.352 Criteria for determining need for aid and attendance and “permanently bedridden”.
(a) Basic criteria for regular aid and attendance and permanently bedridden. The following will be accorded consideration in determining the need for regular aid and attendance, 3.351(c)(3)
- inability of veteran to dress or undress himself (herself), or to keep himself (herself) ordinarily clean and presentable
- frequent need of adjustment of any special prosthetic or orthopedic appliances which by reason of the particular disability cannot be done without aid (this will not include the adjustment of appliances which normal persons would be unable to adjust without aid, such as supports, belts, lacing at the back, etc)
- inability of veteran to feed himself (herself) through loss of coordination of upper extremities or through extreme weakness
- inability to attend to the wants of nature
- or incapacity, physical or mental, which requires care and assistance on a regular basis to protect the veteran from hazards or dangers incident to his or her daily environment
- “Bedridden” will be a proper basis for the determination (need for aid and attendance). For the purpose of this paragraph “bedridden” will be that condition which, through its essential character, actually requires that the claimant remain in bed. The fact that claimant has voluntarily taken to bed or that a physician has prescribed rest in bed for the greater or lesser part of the day to promote convalescence or cure will not suffice.
A veteran does not need to require all of the above for a favorable rating for SMC. The veterans condition, along with the functions the veteran is unable to perform, are all taken in to consideration. The bar to meet is that the veteran is experiencing a level of helplessness to need regular aid and attendance. The need does not have to be a constant one but must need regular assistance.
(c) Attendance by a relative. The performance of the necessary aid and attendance service by a relative of the beneficiary or other member of his or her household will not prevent the granting of the additional allowance.
The following are regulations broken down in common language:
- Assistance with bathing or showering
- Assistance with toileting
- Assistance with feeding (having a need to be fed by someone else)
- Assistance with dressing or undressing
- Assistance with transferring in or out of a bed or chair
- Assistance with incontinence
- Assistance with walking
- Assistance with keeping oneself ordinarily clean and presentable, including hygiene issues
- Assistance with frequent need of adjustment of special prosthetic or orthopedic devices which cannot be done without the aid of another person
- Having an incapacity (physical or psychological/psychiatric) requiring care or assistance on a regular basis to protect the patient from hazards or dangers to his or her daily environment.
Again, the veteran does not need to meet all of the above criteria to be rated for aid and attendance. For a veteran with ALS meeting any of the above criteria is generally not difficult though it must be documented by a physician.
VA does not require a relative, or caregiver, be paid for services in order to receive aid and attendance compensation in the form of a SMC rating.
To be a caregiver is sometimes a choice, and sometimes not a choice. Sometimes being a caregiver is a gift, and sometimes being a caregiver is a painful experience. Sometimes the caregiver experience is all of this and more: a choice, not a choice, a gift, painful, joyful, heartwarming, satisfying, frustrating, and limiting.
On October 23, 1993, unbeknownst to me I would become a caregiver for the rest of my existence. On that day it never occurred to me that a new role was added to my life. All I knew was that my husband, Tom, was a very sick man on this day, and needed help, quickly. What we did not know but would soon learn is he had encephalitis. The encephalitis damaged his executive functioning ability and other, various parts of his brain.
All the things I knew about our life, our family’s future, and myself was flipped upside down on this day. Tom was 38 years old and I was 33. Our kids were 9 and 10 years old. Tom was our leader, he was the guy who loved us fiercely, protected us always, and worked harder than anyone I had ever known. How were we all going to survive this? It would be a few months before it dawned on me that we were surviving, and we were just surviving, because I was learning how to take the reins.
It would be 20 years before it occurred to me I was a caregiver. I had always thought of caregiving as something older people end up doing for their spouses. The first two decades of being a caregiver I did not have peer support. I did what I did because my family needed me to. Despite the sometimes-extreme difficulties I went back to work to help feed our family, to have healthcare benefits for us, to be on a forward trajectory that gives hope instead of mired in the muck of our lost man. Tom was with us but not with us in the way he was pre-brain infection. I finished my undergraduate degree, and earned two master’s degrees, all on a part-basis while I worked, raised my children, and cared for Tom. Faith and flexibility kept me in the game of our life, however, it was a while before I learned that this was key to success.
For a few months, when Tom was at his sickest, I was so overwhelmed with fear, and isolation that I nearly gave up on life. We had no income, his disability claim was denied, and he could barely get out of bed. It was winter in upstate New York. It snowed, and snowed, and snowed. The kids were out of school more days in January then in school. They were bouncing off the walls with boredom. Tom’s eyes were a mess and he wore sunglasses indoors because the sun reflecting on the snow was more than he could take. I hated it all. There was no relief in sight. I was more alone than I ever thought possible. Everything I had wanted to do for myself as the kids got older was permanently shelved. I was grieving hard and did not know it. I couldn’t see my faith through my tears and hurting heart, it felt gone yet it wasn’t. It was always there, and I know it because I am here today.
June of 2010 Tom was diagnosed with Amyotrophic Lateral Sclerosis, ALS. He is a Marine Corps veteran. ALS is a service connected disease. It is a devastating, fatal diagnosis. Even then, when Tom was diagnosed with ALS, I did not categorize myself as a caregiver. It would be three more years after the diagnosis, 2013, before a few younger caregivers of veterans pointed out that I was a caregiver, either way, with or without the label, Tom is still my husband, still the love of my life, and I would not have cared for him any differently if I had always thought of myself as a caregiver. Spouse first, caregiver second.
If I was sitting in a room with younger caregivers to impart the wisdom I have gained over the years I would say if you are faithful it will not leave you even if you feel you do not tend to it daily and it will carry you in the darkest of times. I would say embrace flexibility as a way of life, you will be less frustrated and stressed, it will carry you through some tough times. I would say to take care of yourself because if you do not chances are you will find later in life that some of your health issues are as a result of neglecting your own care. Self-care is health care. The better we take care of ourselves the more successfully we will care for our loved one.
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