Hospice Photography – The last day in my dad’s life
Hospice Photography // Our photography community member Christina Maldonado shared the story of her passing father a few weeks ago in our group. It is her wish to share the story and the circumstances of her father’s death and we will hear her words now. Please have the respect to fully read Christina’s story to understand what her family went through to fully understand her Hospice Photography.
My dad passed away in my arms, while we were listening to the Rosary
My dad has been sick my whole life. The last six years specifically he lived on a ventilator after having sudden cardiac arrest from an internal bleed. His mind was there, his body was not. After having sepsis and going into the hospital last fall, he went to return back to the nursing home that he had lived at for 5 1/2 years and they denied him.
They did not appropriately discharge him and so I took the issue up with many agencies (Seven) including the State Attorneys Office. Every agency, including the State, sided with us and they notified them that they had to take him back.
They refused and decided to pay the fine. See even if the State say’s they had to take him back, they don’t have the power to actually make him. See patients like my dad are costly and the profit margins on them are not high, so facilities do not want them. The hospital sent referrals to facilities around the state, and no one had openings.
So then we moved onto Georgia (we are in Florida) and a facility there said they would take him. After spending four months going back and forth with Miller County hospital they denied him too. I reach out to the CEO, but they did not want to cooperate with the hospital here or with myself.
By this point my dad had been living in the CCU for 11 months. He was costing the hospital 300k a month. They were so kind to both of us and treated my father and I really well, even though he was a burden on them financially. We decided to try to send out referrals to any facility…even ones thousands of miles away. At this point my dad was giving up hope and his mental status changed, he was getting tired.
My background previous to being a full time photographer was in nursing. I knew my dads quality of life was never going to get better and I even questioned constantly his decision to keep living like this, but he always believed he would get better (a spirit of hope and tenacity that I wish I had more of and I respected that about him, even if I didn’t always agree) and believed in the impossible. However, he met with his team and told them he didn’t want to move away, he wanted to stay with me (his only child) and my daughter…but he also didn’t want to die…but if he had to he was ready. He was doing better during the day without the vent but would go back on in the evening overnight to rest his lungs.
He would get hypoxic at night and due to oxygen loss to his brain, he would hallucinate and get scared easy. Because he could not stay here with us and did not want to live far away, by himself (and die alone) in another state, we all together chose hospice. It took me a long time to get myself to really get on board. I have been his sole caretaker for a decade.
My family basically forgot he existed as soon as he entered into the nursing home. All of this was on me and the decision weighed heavy (and still does.) At this point everyone at the hospital was so attached to him.
We set a date to transfer him into hospice and what that would mean was he would not go back on the vent for support. The hospital threw him a huge party, celebrated him, got him gifts and said their goodbyes. Everyone was crying, but they didn’t dare let my dad see. When we got to Hospice they asked my dad what he wanted if he could have anything. He said, my daughter, my granddaughter and to see the puppies. So we made it happen.
I struggled whether I should photograph him, was it appropriate, was it right? Ultimately I decided his story was important…because his life meant something and because of a flawed healthcare system and being poor…his life had to end sooner then he truly wanted. In a system where if you only have money, or good insurance, then your of value.
I captured my dad seeing my daughter for the last time. The look in his face where I can see him heartbroken while looking at her…studying every detail…thinking about everything he will miss that he so desperately wants to be here for. I also see the Joy he had of final happiness…that face I know well, he was truly happy when he glanced over at me and I will cherish that image as well.
When I worked in nursing, I worked in Hospice and long-term care settings. I have always had a heart for the sick and elderly. I feel like we stop telling the stories of people when they aren’t pretty anymore, or aren’t comfortable for us to tell. Our job is to capture life…all of it, up to the end…and truly tell everyone’s stories. I urge you if you have the opportunity to do this for a loved one, or someone else, just do it. You won’t regret it.
My dad passed away in my arms, while we were listening to the Rosary and they were talking about ascending into heaven. It was one of the most spiritual moments of my life and was so peaceful. For that I am grateful, that he felt no pain, and he is no longer in pain. No matter how hard this was for me…this is his story and I am so happy to have these final moments documented.
If you would like to see change in our healthcare system for chronically ill patients and patients in need, please contact your local senator and please feel free to share my dad’s story. It is my wish that we will have a healthcare system that values all life, even the live’s of individuals who are unable to afford the care they need.