Caregiving, Crime, Cancer, & Crohn's Disease

Please tell my story about caregivers, Caregiving for sick family members and sick caregivers. When associated with cancer, especially Colon Cancer, small Bowel Cancer, and Crohn's Disease. Please tell my Story
Hello Staff,

My late husband was the only family member left in his immediate family. I have no one to accompany me to the cemetery when I visit. My late husband was only 55. I hope you all decides to do more research on Small Bowel Cancer, Colorectal Cancer and Crohn's disease. We are losing family members from crime and Cancer. I lost all my family. They all grieved one another.

My late husband started associating the hospital as a place to rest. He was so tired of running around.

My husband passed away June 1, 2019. He was a good man. He was the only family member left in his immediate family. His mother and father had three sons which includes my late husband. In September 2009 their middle son Alvin Alston was killed in Baltimore MD. Alvin was the son his mother depended on. Alvin was a brother, cousin, nephew, uncle, the friend you could depend on. He would cook and prepare food to serve for friends and family, he would help everyone, he would set up Christmas lights, tend to animals, (he loved animals) and rake up leaves for his mother and neighbors. He would help you move your furniture to a new apartment, or storage area, he made errands to the market, if asked he watched over and serve people who's sick. He made school projects for his niece and he would try to do anything if asked of him. He did what he could for his family. Alvin Alston was the glue that kept the family together. However, after his death his mother, father, and other family members had difficulties handling life.

One family illness after another

His mother, Mrs. Alston, and other family members depended on Alvin. He helped his family and he loved his mother. In December 2013, Mr. & Mrs. Alston youngest son, Bay-Bay died from complications of diabetes and major depression. Bay- Bay was the baby in the family, he could do anything and get away with it. He would try to keep the house in order. However, when Mr. & Mrs Alston youngest son passed, they were in need of help such as mental and physical help. Although my husband was always at his mother's home, he had to step up and step into a full time role, to become his parents caregiver, while bearing his own illnesses. My late husband was already sick trying to help his mother. My late husband tried to do what he knew to take care of his parents but he was ill. How can a sick family member become a caregiver for other sick family members? This is what's happening in Baltimore MD. We have crime, covid, and diseases. Who is teaching us to survive? My husband didn't know how to effectively care for his parents but he tried.

My late husband Randolph Alston was diagnosed with Crohn's Disease in 2007 the year I came home from working at Social Security Administration, due to migraine headaches, back in the late 1990's early 2000's. Social Security Administration refused to allow me to work from home. I request to work from home many many times. Can you believe that right now? I feel insignificant right now, as an African American female, my illness and my husband's illness wasn't as important as COVID. Although, "COVID" has helped initialed a lot of work from home options, which is excellent for those who can do it. However, at the time I needed to work from home, to keep my job, the work from home program didn't work out for me, it wasn't an option for me. I was told I couldn't work from home because of the privacy of Social Security Numbers.

If I was allowed the option to work from home maybe my husband would still be alive, if I didn't have a break in service and income. "UNREAL" I believe it was a form of prejudice against me. But, who am I, a woman, a black woman trying to survive under systemic and controlled environments. It was nothing I could do but come home. Believe me, I needed my good government position. But I had no choice. Nevertheless, my husband and I had to live on one person income. Can you imagine living on one person SSDI income trying to maintain a home, trying my best to maintain my own health, and watching my husband learn how to take care of himself? Two sick people feeling the pressure, and responsible for themselves and family members. It was hard but we tried. We did what we knew.

I truly believe my husband could not handle having a family anymore due to all his responsibilities, plus he wasn't able to work anymore. It was too much stress for him. In addition to his disabilities and responsibilities, my husband Crohn's disease was never controlled. I didn't know what was happening in his healthcare plan to control his Crohn's disease. I trusted my husband to take care of himself. I didn't ask many questions. How did it come to this point that his life couldn't be saved? I understand he had gaps in his care, I understand he was non-compliance due to marriage issues, financial problems, and trying his best to care for his mother and father. My question for you today is "What can be done when there are multiple family health crisis"? And you have a caregiver who is critically ill?

Being a caregiver while bearing your own illnesses

The caregiver, "my husband", was the only responsible person in the family and he had Crohn's disease that eventually turned into small bowel cancer. Everybody in my family had some sort of health problem. What can be done when caregivers are sicker than the people he/she is trying to take care of? Especially, when you have a chronic and disabling illness such as Crohn's and Colitis disease. My husband was not going refuse taking care of his mother. Who wouldn't try to help their mother? He put his health in jeopardy by placing his mother first. He loved his mother and that's what he was going to do, no matter what. I loved my husband, and I lost him. Did I lose him due to lack of knowledge, or not being informed? Nevertheless, we had our problems, I was concerned about my husband's health. I was worried about him. But, I didn't know how to help him, I couldn't help myself. I don't think straight when I am under so much stress, I make mistakes. Nevertheless, I tried to talk with him about his mother and how I was worried about his health. He didn't listen but he did what was best for his mother, he promised to take care of her. He made me angry with his decisions. I didn't know what to do. I didn't know he was in danger of death. I thought, he'd been managing his Crohn's disease, maybe we can get through this with his mother living with us. "Maybe". I later thought maybe if he had received Social Security Disability Insurance which he applied for, may have helped him survived. I am not saying "money" would have save him, all I am saying is maybe it would have given him some time to think about himself.

If his doctors were clear about his "RISK" about cancer early on and documenting every step of his illness, pointing out what could happen to him in real time, maybe he would still be here, "maybe". Everything we tried seemed as though it failed. His care team kept giving, Randy, different biologics as if it was going to solve his problem. According to my reading, biologics can cause cancer, especially if it wasn't controlling the Crohn's disease. I am not saying that's what happened. I just don't know. He was always admitted in the hospital, the hospital patched him up and then sent him back home. He would be fine for awhile, then 4 months later he would be right back in the hospital. He was in the hospital at least 4 times a year. I thought it was normal. They let him have his way. We were used to running back and forth to the hospital. I thought that was the way to control Crohn's disease.

I wish Crohn's was explained better

Although he is gone forever I would like to make sure this sort of nightmare will not happen to another family. A family whose family members have multiple health problems. Did I explain why my husband was non-compliance, let me explain. The reason my husband was non-compliance was due to being a caregiver to his parents, and not having financial support from the Social Security Administration. He had problems paying his bills. My husband was trying to help me. He saw I needed help. I wasn't handling things too well. He placed me in Northwest hospital to receive a psychological review. My husband SSDI claim was denied when he needed it most. That was so sad. I felt so bad, again, I just did not know how to help him. I think SSDI system is to hard on African American men. They treat African American men as if they don't exist. We couldn't even get food stamps, "SNAP" in order to eat, to eat a Crohn's diet. Crohn's diet is extremely important part of healing, and we didn't have enough money to buy food. I received $6.00 to feed my husband. "$6.00" This was back in 2010, 2011, 2012, 2013 this was early in his illness, if we received snap maybe it would have made a difference. I was highly upset because I just didn't know how to help him.

In March 2016, my mother had a stroke and she refused to accept it. I had to run around to make sure she doesn't hurt herself further. She had refused to go into an independent senior building back in 2014 or 2015. She had a fire in 2014. It was difficult to get my mother to do anything. However, she is currently in Courtland Future Care right now due to her smoking, and having more strokes, having a fire, and not wanting to live in an independent senior building, I couldn't control my mother, she never really listen to me. After, my husband passed I couldn't get stable care for my mother due to lack of help from home health aides and/ or state caregivers. One particular caregiver would visit my mother home and do absolutely nothing, especially if they weren't receiving enough hours of work. Another particular caregiver would go to the store and buy my mother cigarettes, knowing it was bad for her health. I ask her not to buy my mother cigarettes. I been jumping around a lot, in my story, however, in 2016, my mother, my mother in law, and my father in-law were all in the Hospital at the same time. On June 19, 2016 my mother-in-law came home to live with my husband and I, because her husband, my father in-law, was admitted to the hospital. The same year my father in-laws died on July 8, 2016 in a veteran hospital. In March 2018 my mother- in law passed away from complications of diabetes and complications from a broken heart syndrome. On June 1, 2019, my good looking, nice and compassionate husband passed away from Crohn's disease which turned into Small Bowel Cancer.

We didn't know the risks

I never knew he was in danger of getting cancer or dying. I think I was in shock, I already couldn't think. I did not know what was happening to my husband right in front of my eyes. Things were happening so fast and I didn't know what to do for my family. The next thing I knew they were all gone. It seemed as though I was in some sort of fog, as if I was in another world. The doctors ignored me when my husband was dying, I didn't know what questions to ask. I was very quiet, I become quiet when I am scared and I didn't know what's going on, especially if no one is explaining things to me. I felt like I failed my husband, I failed my family. I watched my husband suffer from dual illnesses or diseases that I knew nothing about. Again, I did not realize he was in danger of dying, I really didn't know. How can a sick caregiver take care of other sick family members? How can small bowel cancer that metastasized be treated after having Crohns disease? How can an oncologist treat small bowel cancer knowing that Crohn's disease attacks your immune System? What happens to a Crohn's related body after being placed on chemotherapy, we know chemotherapy kills good and bad cells?

Crohn's disease attacks your body.Crohn's disease gives your body an overactive immune system it is looking for germs, virus and bacteria that's not there. Again, My husband's crohn's disease was never controlled. How can an oncologist treat small bowel cancer if you suffered from Crohn's disease that attacks the body? Again, how do you treat the cancer?, Do you treat it the same as Colorectal Cancer? We know everybody's cancer is treated differently. Everybody's cancer is different, you don't use the same treatment for everyone. Did my husband have genetic testing, I don't know? Genetic testing would have given him individualize treatment. Would it have saved him? Again, chemotherapy attacks your good cells and bad cells. Was my husband going to die anyway? I didn't know, according to my reading he didn't have a chance. Just think about it. My husband had difficulties treating his diseases, he had extreme stressful events, we couldn't afford a Crohn's diet, he didn't know what to eat, his doctor didn't believe in "Medical Marijuana", we had trouble affording copay for remicade, we weren't educated about risk factors of his diseases, he had gaps in his health care, he was non-compliance due to family obligations, he was denied SSDI benefits, and most importantly he lost his entire family, and I lost them all.

Help me turn my pain into a purpose

Family dynamic should play a significant part in treatment for Crohn's and colitis. My life seems unreal right now. Please help the Crohn's and colitis population, especially the population that not receiving important information to make better educated decisions. Please help poor patients that suffered from the systems when diagnosed with Crohn's disease and small bowel cancer. I believe we got lost in the system. I didn't understand all of this back when my husband needed it most, and when he was dying. I wish I understood his disease when it counted the most. No one explained it to me. Please help the Crohn's and colitis foundation and population in the name of my husband Randolph Alston. Please help me help others who might be going through the same thing and help folks like me who had no knowledge about how to take care of his/her family members due to multiple illnesses and family crisis. I was in some sort of brain fog status, I couldn't think clearly. I couldn't ask a question? Help me turn my pain into a purpose regarding small Bowel Cancer.

Thanks in Advance
Ella