It isn’t a common experience to be placed on hospice care and live through it, but that’s exactly what happened to me. Having lived through this, I want to share my experience so that people can better care for their loved ones who are dying. These are my experiences and it may be different for other people; I only know how I felt and hope this will help someone.
When your body is shutting down, you’ve lost enough weight that you look like skin and bones, and you can no longer eat or drink; there are some simple things that can ease suffering greatly. Muscles ache and feel very sore, feet and legs go numb, and the mouth is very dry. If it is allowed, rub water on the lips and inside of the mouth when possible (my mother did this for me even when it wasn’t allowed). I can’t describe how it feels to go without even a sip of water for weeks at a time. It’s truly like torture. If the patient can’t swallow just use your finger to wet the lips and also use chap stick.
Use lotion and rub the feet and calves gently being careful not to scrape the skin with jewelry or nails. If the patient has lost a large amount of weight, I promise they are absolutely freezing even if it is warm in the room. I’m 5’11 and I weighed eighty-nine pounds. At one point I was on a respirator with my hands tied down for twenty one days. I couldn’t tell anyone I was cold and I would just shake violently until whoever was working that day figured it out. Always offer extra blankets and to turn up the heat.
If there’s some small thing that the person loved, for instance, it has always been soothing to me to have my hair stroked; do it even if the person doesn’t seem to be aware. Hold their hand, sing, talk to them, and please don’t talk about the person like they have already passed away. The hardest thing about being sick is when people treat you like you’re already dead. They stop making plans with you or think you can’t hear them, and this includes nurses. I heard a nurse tell my fourteen year old daughter, “You need to prepare yourself, your mother isn’t going to get better.” I realize the nurse was trying to prepare my daughter for what she thought was inevitable, after all, I was on hospice care. However, she didn’t realize how stubborn I was or that I had promised my daughter I would come home to her, no matter what. Hope, even in such a horrible situation is never a bad thing. I clung to hope and that hope made me cling to life. Even if your family member does pass away, it’s comforting to know that your loved ones never gave up on you and wanted you to fight to the last breath.
Something that really bothered me when I was “dying” was that people made assumptions about if I would live, when I would die, how much strength I had, and even how my children would deal with it. At one point a social worker came to my home and asked if there was anything she could do, how were my children coping etc.. She even told me that I didn’t have to act so brave or positive. She assumed I was acting. I informed her that I really was brave, not afraid, and even with death looming I would not give up. She was very obviously frustrated with me when I told her that my children would be fine because I had no intention of dying. I know the woman thought I was crazy and maybe I was, but I was also right. Even my mother had accepted the fact that I would die. I never believed that I would. I assumed I would make it. Leave the assumptions up to the dying person please. Don’t assume I’m not hungry, or cold, or awake even though my eyes are closed. Don’t even assume that I will die today. Only I know when my time has come. I truly believe that every person can sense their own departure from this world when the time comes.
The best and kindest thing you can do for someone in hospice is to ask yourself, “If that were me, how would I feel? What would I want if I couldn’t do anything for myself?” When you truly put yourself in another’s place you can be truly empathetic and giving. Someday we will all be in those shoes but I can tell you that it’s nothing to be afraid of. There’s a point where it doesn’t hurt anymore and you are so sick that you pray to be made better or for God to take you home. Either way it’s hardest on the people who love you.