Sunday, July 11, 2010

Immigration reform and family caregivers of disabled U.S. veterans

Our country urgently needs a comprehensive immigration reform to fix our broken immigration system. There are many reasons why we need the reform, and one of them involves human rights issues. Our current immigration law does not support U.S. families who take care of disabled U.S. citizens , including disabled U.S. veterans. A disabled veteran should not have to physically and emotionally suffer and be condemned to premature death because a visa number is not available for a veteran's adult step child's approved green card petition even though the stepchild is a non-replaceable full-time care giver to the veteran.

My husband, is a Native American, a retired officer of the U.S. Armed Forces, and a disabled housebound veteran. My husband suffers from two major illnesses: Post Traumatic Stress Disorder (PTSD) and Frontotemporal Dementia (FTD), a neurologic progressive disease which destroys the human brain and which is classified as a terminal condition. In my husband's case, both diseases interact with each other, and my husband requires 24-hour care. Because of my husband's medical and combat background, it is impossible to institutionalize my husband without causing him severe emotional distress and substantially shortening his life expectancy; therefore, our family has decided to provide in-home care for my husband and has been taking care of him for the last several years.

My son and I are of foreign national origin. I am a U.S. citizen. Luckily for my husband and me, my son is living with us and is helping me to take care of my husband. My son came to the U.S. to attend a university on a student visa. However, our current immigrations systems includes no provisions to allow foreign-born adult children, not even those of U.S. citizens, to stay as a caregiver to their parents once the student visa expires, not even when a parent become fully disabled. In fact, a disabled person's adult child faces the choice of either leaving the U.S. and a mother or father who is in great need behind or overstaying the visa to provide desperately needed help but putting the own future in this country and the own legal status at risk.

Some people might argue that there are other sources of help available for families like ours and for disabled American veterans, and initially I believed that to be the case. Unfortunately, as explained later in this blog, my hope to find any meaningful outside assistance to help me taking care of my husband has faded.

In the name of all U.S. families who are trying to provide their loved ones with quality in-home care and who have to rely on the help of their foreign-born adult children, I would like to ask you to support the comprehensive immigration reform and remind our lawmakers of the dependency of many old, ill and disabled U.S. citizens on foreign-born family members as their caregivers.

Quite often, a veteran's family and the veteran suffer extreme hardship because the veteran is not able to get all required help through the VA. After my husband saw 22 nurse aides come and go in just six months, he no longer accepts the assistance of nurse aides and strangers. Most nurse aides quit after just one week, and some even quit after just a few hours even though they were only asked to help five days per week and three hours per day. Yes, taking care of my husband is not an easy game. Yes, he has severe PTSD and has to be treated very gentle and very carefully because he is afraid of every motion. Yes, his brain is severely damaged by FTD, and he has a very hard time to make sense of human language and his surroundings. And yes, he is in a very good physical condition--very fast, very mobile, and very strong-- and he refuses to just stay in his bed or sit in one spot. In my absence, some of my husband's nurses were aggressive towards him, and most of them were just completely unprepared to take care of a disabled veteran with PTSD and brain damages. In fact, some of them were not even certified despite certification requirements for patients in my husband's condition. The VA would send nurse aides who just completed some kind of basic training, and quite often my husband was their very first client. Inexperienced nurse aides would give up quickly, and the more qualified candidates would find other, better jobs, which were less stressful.

In other words, I ended up having to take care of my husband all by myself; however, it is impossible for just one person to take care of somebody with FDT and PTSD, because the disabled person must not be left unattended at any time. Researchers suggest that caregivers of individuals with Frontotemporal Dementia (FTD) face challenges beyond those faced by typical dementia caregivers like Alzheimer's dementia, and the interaction of FTD and PTSD makes caring for my husband even more difficult.

Of course, I always get very helpful suggestion from other people. My favorite on is that I should ask some of our retired neighbors to help take care of my husband. This might work if he were old and bedbound; however, he likes to run around all day long. In fact, several nurse aides were complaining about how much he runs around and stated that they have a hard time keeping up with him.

Well, so I'm told to just lock my husband up. Great idea, but people with my husband's condition begin to panic when they feel being locked up, and the last thing I would like to do to somebody with severe PTSD is to make him panic.

Finally, some people tell me to put my husband on special medications. Yes, there are medications available that would calm him down and make him stay in bed. These medications are sometimes used in hospitals or nursing homes, and my husband did receive them while he was in a hospital. The only catch is that, according to the FDA, these medications substantially increases the risk of death in people with my husband's condition. In fact, after receiving these medications for just a few weeks, my husband's life expectancy was decreased to only three months. Faced with this development, I decided to take my husband back home and discontinue the medications; however, it took him almost one year to recover from the side effects.

Of course some people tell me that since his condition is a terminal one, we would not face any legal challenges if we were to continue to give him these medications and if he would die a little bit prematurely. After all, he will die anyway. Well, we will all die one day, and I don't believe that the lives of those who have fewer years to lives count less than the lives of people who might live longer. And I don't believe that just because somebody has become disabled and is no longer able to defend himself this person should be discarded.

And yes, my husband is still a human being with memories, emotions, and fears. He still enjoys going swimming, he loves to walk and observe wildlife, he still cries, and he still laughs.

Well back to the drawing board then. What about volunteers? After all, what could be more rewarding than to help the family of a disabled veteran? I met many people who offered to volunteer and take care of my husband, and a few actually tried it, but as it turned out they found the job to be too stressful to incorporate it into their already stressful life. And besides, we are not talking about volunteering a few hours per week. To make a dent into my husband's caregiving schedule, it would take hundreds of hours per year.

Of course there are well-organized nonprofit organizations which support families with disabled members. However, since my husband suffers from PTSD and Frontotemporal dementia, which by the way requires a very different caregiving approach than offered to Alzheimer's patients, none of these nonprofit organizations felt prepared to help our family.

I knew that I could not care for my husband by myself, and luckily my son agreed to help me; however, even if a veteran's adult stepchild who is from abroad is willing to help taking care of the parent, it takes up to seven years for the stepchild to receive a visa number after a green card petition has been approved, despite the adult child's biological parent being a U.S. citizen.

The current immigration system takes away critical health care resources from our disabled parents and disregards their wish to live out their lives at home with their families. Financially, this approach doesn't make sense either. After losing the volunteer help of his family, an ill, disable elderly family member has to turn to the government for more financial support and might even have to go through bankruptcy. If my husband would be institutionalized, it would cost the taxpayer over $45,000 per year to support his care. Right now, our family receives absolutely no compensation for taking care of him at home.

Not too many people know that caregiving is one of the hardest unpaid jobs and that families who care for a spouse save taxpayers a lot of money. In a program broadcast on PBS in June of 2005 (And Thou Shalt Honor... National Caregiving Town Hall Meeting) Senator Hillary Rodham Clinton (D-NY) said, "It's either someone in a nursing home or someone in their home. It's either paid professionals or an unpaid family member. And isn't it smarter, better, more reflective of our values to help keep people at home if that's their choice and to support the families that are doing that?"

I know that it is not convenient to take action and support our family in the effort to preserve the life of my husband, a disable housebound veteran, but to do nothing, in my opinion, is to give consent to my husband’s avoidable early death, distress and emotional suffering—what seems for some decision makers so easy, especially now that he is no longer able to represent himself.

Our family is confronted with the problems of a broken immigration law. I researched all alternatives to help my husband and found only two options:

Option A

My husband can stay home, get the care he deserves, get love and attention, freedom of movement, go every day for walks and enjoy the last period of his life. This approach requires one-to-one care which no nursing home can provide and which requires more than just one caregiver. To support this option, I need a help from my adult son.

Option B

The second option for my husband is to go to a nursing home. However, assisted living or nursing homes do not want to accept younger, stronger patients with behavior problems, especially veterans with brain damages and PTSD. But even in the very unlikely case that I could find a nursing home that would accept my husband, we have to understand that nursing homes are not able to assign a nurse to every patient; therefore, patients with this kind of disability are controlled through high doses of drugs. To immobilize people in this condition, patients are tied to their beds and are given large doses of Atypical Antipsychotic medications which as a side effect substantially increase the risk of death. After a short time, my husband would be no longer able to walk; and soon, he would be unable to move at all. Because of incontinence and decreased mobility, his skin would start to break down, and he would develop ulcers. Next, he would get a feeding tube. This procedure could be harmful. The iatrogenic effects include infection, diarrhea, and bloating. Another common occurrence is that patients who feel uncomfortable with a feeding tube might try to pull it out. This may in turn result in the patient being restrained.

Obviously, this option will cause my husband emotional pain, severe discomfort, and it will expedite his death substantially. Did my husband not suffer enough because of his PTSD symptoms, dreadful nightmares and horrible flashbacks? Does he really need to suffer even more? Is it not enough that his active life ended at the age of 61? It was hard enough for me to watch his emotional distress and depression during his last hospital stay when he begged me to take him back home.

Which one of these two options is in your opinion the ethical one and which one do you support?

Ever since my husband was released from the hospital, he needed around-the-clock care. Initially, we received some help from nurse-aide which were sent by the VA; however, since we were unable to retain qualified and reliable help, we ended up being the only two caregivers to my husband.

In the morning my husband needs to be showered and assisted in the bathroom. Since he has a hard time to understand the sequence of what he needs to do in the bathroom, how to use objects in the bathroom (e.g. sink, toilet, toothbrush, etc.) and how to interpret human language, assisting him in the bathroom requires a lot of time and patience. After assisting him in the shower, we need to apply his skin medication (creams), dress him, give him his oral medications and feed him breakfast. Giving my husband his oral medication is very time consuming because he does not understand the concept of swallowing pills and has a great difficulty swallowing liquids. Bathing, dressing, feeding and all related tasks in the morning can easily take up to two hours.

After breakfast, we need to prepare my husband for his first out of four sets of walks. Each set of walks is two miles long and takes between one-and-a-half to two hours to complete. My husband walks every day, rain or shine. Walking is his most important hobby; however, walking is also very important for his physical and mental condition. Mental stimulation (interacting with the world through perception and action) improves brain function and actually slows down the cognitive decline, as does physical exercise. According to Dr. Yaffe, who is Chief of Geriatric Psychiatry at the San Francisco Veterans Administration Medical Center, "for every extra mile walked per week there [is] a 13% less chance of cognitive decline."

After each walk, we have to check if my husband's diaper needs to be changed and if he needs to be washed. In-between his walks, he needs to be fed and encouraged to drink. Sometimes he will eat by himself; however, since he has the tendency to choke on food, he must not be left unattended. To maintain his strength, he needs to eat a meal before each walk.

In the evening, my husband does not like to be left alone for more than a few minutes. He likes to watch movies, but he insist on somebody watching his movies with him. We also shun leaving him alone for safety reasons as we try to minimize the chance of him unintentionally hurting himself or engaging in undesirable behavior. Before going to bed, my husband again needs to be helped in the bathroom with personal hygiene, using the toiled and taking a shower. At night, he follows his habit of going to the bathroom, whether he really needs to or not. The frequency of his restroom breaks varies from three to over ten per night. Since he tends to be very disoriented at night, each time when he gets up he must be accompanied and assisted.

Normally, the night watch is handled by me; when I am sick, however, my son has to stay with my husband in his room, and it becomes his responsibility to accompany him to the bathroom at night.

It is very hard for one person to wash and change my husband and to change the bed sheets and wash the floor when my husband uses and shifts his diaper because he is unable to wait for even just a few moments. On a normal day, my husband requires about 18 hours of care and attention. My son and I try to split the caregiving time and divide each day into several caregiving shifts. If one caregiver gets sick, the other one has to take over all shifts.

The years of caregiving had a severe impact on my son's and my health. Short time ago, my son found me with severe internal bleedings unconscious at my desk. I had to stay at the hospital for several days to recover, and my son ended up being the only caregiver to my husband. After I was released from the hospital, my son had to take care of my husband and me. I don't even want to know what would have happened to my husband and me if my son were not with us. Just as stated by the website dedicated to caregiving issues ( and as understood by all caregivers: “Caring for a loved one demonstrates tremendous commitment and devotion... but you can't do it alone.”

I really believe that we have a moral obligation towards our families and towards those who dedicated their lives to serve our country, and I truly believe that it is right and just to fight for every day of life for all the people who have given so much to us.

I would like to ask you to support the comprehensive immigration reform and remind our lawmakers of the dependency of many old, ill and disabled U.S. citizens on foreign-born family members as their caregivers. I would like to ask you to remind our lawmakers that even the ill, the old, and the disabled should have the right to live out their lives in peace and dignity and not immobilized with medications that substantially shorten their lives and tied to their beds. My husband and I would greatly appreciate your support.

1 comment:

  1. Boy I feel for you. My mother had undiagnosed dementia at a VA nursing home in Colorado. They threw her out for behavior problems. I mean they packed her up and put her on the doorstep. I felt she needed to be in a neuro unit. It is a nightmare!

    I worked with brain injury about 10 years ago. The VA doesn't seem to have a clue about this! You feel so all alone with it. It can be overwhelming.

    I contacted the VA and haven't heard a word back.

    You do need your son here and I support getting a visa!