SANAD is an independent non-governmental non-profit organization established in Lebanon in January 2010. It provides home hospice care to advanced chronically and terminally ill patients and their families.
In order to shed light on the impact that hospice care has on patients’ and families’ lives, SANAD talked to Mrs. Abla Badran, the wife of Mr. Mohammad Badran, who was supported by SANAD before passing away at home in 2017.
- Tell us a bit about your husband, Mohammad.
“Mohammad was a painter. If he was known for anything, it was his sense of humor. His personality was larger than life and so was his heart, as he was always the first to offer a helping hand for anyone who needed it. Despite his positive outlook on life, Mohammad always had a deep-rooted conviction that he will develop a terminal illness because it ran in the family. In a way, it blessed him with an exceptional ability to accept death as a fact of life. When we would be squeamishly dismissive of the topic, he was always the one who tackled it frankly, in a ‘matter of fact’ fashion.. He was prepared for it long before cancer visited us. At 52 years old, cancer made a home for itself in Mohammad’s lungs, it went on to metastasize to his bones and all over. Cancer took over and took him away in April of 2017.”
- How did you learn about his diagnosis?
“Mohammad felt a sudden pulse of pain in his inner thigh that persisted for a few days, he then noticed a cyst. We speculated it could be a hernia. To make sure, we decided to get it checked out. I think he knew right then what it was. Having had accompanied his family throughout their hospital visits, he was well accustomed to the procedures. He went by himself to the hospital and underwent a test and a screening that affirmed what he was already prepared for. That day, I remember him coming home with the test results. He sat on a chair in the kitchen where I was doing the dishes. Unsuspectingly, I asked him what the doctors said.
“That’s not a joking matter.” I protested with a half-amused, half alarmed smirk on my face.
“I’m not joking. I have cancer. It’s terminal”
“Life as I knew it halted. It was too much to process. I retreated to my room where I locked myself in and proceeded to sob in disbelief. Mohammad tailed me. “Why are you crying? Is it not a fact of all life that we all will face death one day? The tickets will be different for each of us, but the destination is the same. My ticket just happened to be cancer. It will be okay.”
It felt ironic and borderline surreal how the person who had just received a terminal diagnosis was trying to comfort me; someone with their health intact and their days not yet numbered. It was not something I could-or wanted to-comprehend. I remember becoming defensive and overprotective of him, I had to accompany him everywhere, I was not going to leave his side or let him out of my sight, I guess I wanted to make sure I had him all for myself as much as I possibly could until either death or, by some miracle, a cure found him. He tried to make me accept the idea of his passing but I could not. He injected the topic carefully into our everyday conversations. From casually discussing a convenient burial place over lunch to asking me repeatedly to make sure I visit his grave every chance I could.”
3. What was it like for your children?
“My children only knew about his situation a short time before he passed away, along with our extended families. Prior to this, it was his desire that only me and him would know about it. I accompanied him to his routine checkups by myself. The news hit them hard, it was understandably too much of a painful situation for them to comprehend at their tender ages of 9, 16, and 18.”
- What was it like to care for him by yourself?
“Before disclosing his condition to his family, I was Mohammad’s sole caregiver. During the 9 month period of his illness I made sure to take care of his medication, baths, and everything he needed to be comfortable. Mohammad was alert and functional the first 6 months after he received his diagnosis. Our children were still not yet aware of the situation at that point. We just told them that he was sick and on medication.
The final three months were different, his health deteriorated quickly. One night he suddenly fell ill with a high fever, I was alone with 3 small children at the house and no one to drive me to the hospital. I spent the night by his side applying cold compresses till we were able to get help. He had fallen off the bed during the night and I struggled to pull him back up. It was at that moment when it really hit me how hard this was going to be for me to face by myself, it was only going to get worse from then onwards, and I was alone.”
5. How did you get introduced to SANAD?
“The night Mohammad got really sick, we were referred by his doctor to SANAD. Afterward, we got introduced to Zeinab, SANAD’s nursing director. She visited us and we discussed everything related to Mohammad’s condition. That by itself gave me a great amount of relief, knowing that I won’t need to face this alone. I wasn’t aware of the presence of an NGO that actually does home visits to provide this type of care at the comfort of the patient’s home. All free of charge. There is really nothing I could say that would describe the amount of emotional security their presence provided me and my family with during what could have been the most difficult phase of our lives.”
- How did SANAD impact your lives?
“SANAD helped us by preparing us for the stages as they developed towards the end. Zeinab never left my side and was always a phone call away, guiding me on how to handle his newly emerging symptoms while she reached us. I could never repay them what they have offered me.
SANAD’s psychologist, Daline, helped me accept my husband’s situation and gave me a new perspective on his final days, how they should be treasured and lived to the fullest, how they can be beautiful and memorable instead of being morose and grim. I know I would have never accepted the situation if it weren’t for her and SANAD’s presence by my side. After Mohammad’s death, Daline helped me break the news to my youngest daughter. SANAD’s mental health team provided grief support through home visits for over 3 months after Mohammad’s passing. I am still in close contact with Zeinab to this day.
In a time when I thought I would be completely powerless, I drew my strength from Mohamad and from SANAD. I called them once in the middle of the night, they came right away and stayed by his side all night applying cold compresses and comforting him.
He loved them a lot, and he was so comfortable with them.”
- How did SANAD help practically?
“SANAD made sure we had all the medical equipment Mohammad needed to stay comfortable. They also supported us with tests, an oxygen machine, a pressure machine, a medical bed at home, basically anything that would have otherwise been extremely difficult for me to secure due to their high prices. Everything Mohammad needed to stay pain free and at peace was now at his reach, at home; the place he loved most, and next to his family; the people he loved most. SANAD prioritized his sense of dignity and respected his wishes, the main one being him staying home and not being admitted to the hospital. He didn’t feel the need to go to the hospital, now that SANAD was by his side.”
- How would you describe your experience with hospice care, overall?
“Before SANAD entered our home, I was in a constant state of fear and anxiety. Lost and overwhelmed with all the things that I needed to take care of.
His medical procedures, his symptoms, his mental wellbeing, my children’s reaction to the situation, and my own mental wellbeing suddenly appeared on my plate and I thought I had to face it all by myself, because it was only me and him who knew about his prognosis. Not even his family knew. I had to take care of every little detail, treading into a territory of overnight fevers, unprecedented pain onsets, and topics I never thought I had to deal with that soon in life, all while dealing with the heart wrenching grief of losing my life partner.
He had anxiety as well because he was worried about me. He had to drive himself to the hospital to take his treatment as I didn’t know how to drive.
After we were introduced to SANAD, a sense of comfort canopied over our home. Having someone to visit us on a daily basis to check up on him, asses his pain and symptoms, listen- sincerely listen- to his needs and questions was such a marvelous thing to witness.
Daline was always by our side helped me break the news of Mohammad’s condition to our children. I can’t imagine how hard it would have been to have to do that by myself.
Zeinab understood all my fears and guided me through this rough time, along with the psychologist. She was always accessible to me and Mohammad, always ready to address whatever worries we had. It made a world of a difference for my mental wellbeing, a sense of relief that allowed me to sleep peacefully throughout the night knowing that if anything was to happen, we had SANAD.
SANAD’s interdisciplinary team of nurses, medical doctor, and psychologist all took time caring for Mohammad, and he loved them all. He felt comfortable with them. Next thing we knew, that sense of humor we all missed was back. He joked around with Ayla, SANAD’s nurse, on how beautiful his green eyes were. He was at peace. He was himself again. The same happy-go-lucky, larger than life Mohammad that we knew and loved.”
- Were there any memorable experiences you would like to share?
“Our daughter’s graduation day was nearing and we weren’t sure Mohammad would make it to see her graduate from high school. Zeinab asked me to talk to the school and obtain a graduation gown. She wanted us to throw a graduation party while Mohammad was still with us. She asked me to invite the whole family over.
Zeinab ordered the cake, we prepared party snacks. We dressed Mohammad up and made sure he had a wonderful day with SANAD and the family and that he got to see his daughter in her graduation gown, it was full of much needed lighthearted laughter and warm chit-chats. I was so grateful for SANAD for giving him the chance to see his daughter’s graduation, and for giving us this moment with him.”
- What was it like the day Mohammad passed?
“Every Sunday, Mohammad used to take us to the beach. Our last Sunday at the beach was one of the most joyous days of my life. But it was different. I could sense that it would be our last Sunday at the beach as a family, and I knew that he knew, because he was acting like it. Things went downhill fast afterwards. Mohammad had already discussed his wishes with Zeinab in detail, he wanted her to make sure we wouldn’t be afraid, he wanted to make sure that she was by our side when the time came. She honored his wishes well.
On his final day, he woke up, hugged and kissed me, and said he loved me. He started slipping in and out of consciousness at about 4 in the morning. Our family then joined us and we were all gathered by his side. When he was comatose, it was as if he could hear us, but he couldn’t talk.
Zeinab came over and checked up on him, she gave him his medication and asked me to stay by his side and to let him sleep. Zeinab kept visiting regularly throughout the day and made sure everything was the way it needed to be, that all my questions were answered, and that he was comfortable and not in pain. Things stayed that way till about 8 at night.
As Mohammad’s final hour was hovering nearer, Zeinab suggested we distance my youngest daughter from the scene. We relocated her to my brother’s house where she stayed there, away and safe from an occurrence far too harsh for her to witness.
Zeinab announced the situation to the family; we were at the final stages. I entered his room and felt that he was bidding goodbye, he had turned his face away from me. I sat next to him. I never thought I was able to utter such words with acceptance, but I did.
“You can go now. May God be with you.”
I promised I’d take good care of the children. He had already made sure while he still had his health to settle everything up for me so I wouldn’t be burdened by anything after he left. He sorted all our financial matters and set us up for a comfortable life after his passing.
After exchanging goodbyes, he glanced over and gave me a final smile, he then closed his eyes and drifted away. He left this world comfortable and smiling, and that was all that mattered.
Cancer and its pain could not take Mohammad’s personality and sense of humour away from that away from us, because we had SANAD to help him retain his sense of identity and quality of life during his final stages,
I will always be grateful for that.”
SANAD is an independent non-governmental non-profit organization established in January 2010. It provides home hospice care to advanced chronically and terminally ill patients and their families in Lebanon.
SANAD was established to address the many challenges experienced by advanced chronically and terminally ill patients and their families as they deal with their illness and its reality. SANAD’s holistic approach to hospice care addresses any medical, nursing, spiritual, social, and psychological challenges patients and their families may need.
In parallel, SANAD also undertakes extensive awareness-raising activities at the levels of the community and the medical and nursing professions to facilitate a better understanding of the issues and the concepts behind hospice and palliative care in Lebanon. This buy-in is essential for the creation of a supportive environment for advocating for patients’ rights in Lebanon and in the region.