First, if you have reached this page because you searched online for “parent in hospice,” or because a caring friend forwarded it to you, my heart truly breaks for you and goes out to you. If I could hug you and cry with you I would. How to deal with a parent in hospice is definitely not an easy or fun topic to write about and there is no right or wrong answer on the subject. I just wanted to share my personal experience in the hopes it might help someone else.
Sometime in November of 2014 I received a call from my mom. I do not remember the exact date, and I don’t want to. I do remember the gut-wrenching feeling. My dad has been sick for roughly two months, had been to many appointments, undergone many tests, and even had surgery. He had officially been diagnosed with Stage 4 Lung Cancer and we were in the stage of “what’s next?” with words like radiation and chemotherapy being thrown around. My mom called because her and my dad had just gotten back home after his latest appointment. I heard her say (surprisingly calmly) “they are going to put him in hospice care.” I screamed, dropped to my knees, and sobbed in my apartment’s kitchen.
I was not surprised by my dad being diagnosed with lung cancer because he was a lifelong heavy smoker. It was one of my greatest fears realized. However, I never had considered what it would be like to have a parent in hospice. Not even once. Especially not in 2014, when I was still in my early 30’s.
Hospice care focuses on comfort and quality of life, not curing diseases. It is for patients who are expected to live six months or less due to a terminal illness. Here’s some more info from WebMD, if you’re interested. My only experience with hospice prior to this was with my grandparents. And actually most of the people I knew who had experience with hospice shared stories about their grandparents or other elderly family members. But my dad wasn’t elderly, he was only 64. And he was my dad. I felt like I was way too young to lose a parent.
Luckily I was part of an online community at the time, and I turned to the message boards immediately to ask for some support. Here is some of the good advice I received:
*Take advantage of the amazing resource that hospice is.
*Ask about special services like massage therapy, art therapy, creating memory books, whatever might be helpful to you and your family.
*Hospice nurses are a special breed of people. They are typically incredibly kind and compassionate. Don’t be afraid to ask lot’s of questions or lean on them for comfort.
*If your hospice caregivers aren’t a good fit, don’t be afraid to switch.
*If anyone offers to help, take them up on that offer!
*Take lot’s of pictures and videos (this was hard for me to do honestly, but I know it was good advice).
*Spend as much time with your dad as possible.
I didn’t follow all of the advice, but I did get through it. I survived. Looking back on the experience now, almost a year later, here is what I would tell someone facing the same heartbreaking situation:
Take all the support you can get, from anywhere
Don’t be afraid to reach out. I had a loving husband, family, friends and co-workers who cared about me. A therapist might have been helpful too, but I felt guilty about finding the time to visit one. I mentioned the online community earlier, because that was a great form of support. Talking to people online, who couldn’t see me cry, or didn’t expect me to respond immediately, was often much easier than talking to people in real life.
Hospice is for you, too
Hospice care is all about the whole family unit. They often have support groups and counseling options. Talk to the nurses and let them know what you need. If you want to know more about the dying process and what to expect next, ask. If you want to get involved in the care of your parent, tell them. If you don’t want to know those details, that’s okay too. Do what you need to do, but understand that you are important.
Ask for help
The kind of help you need. I was pregnant with my second son at the time my dad was entered into hospice care. I also was in a very stressful work situation, and had a history of anxiety and depression. At my regular prenatal check up right after my dad was put in hospice, I let my doctor know what was going on and that I wanted help in the form of medication. I was not sleeping well (if at all), was having a great deal of anxiety and needed help coping with life. That was what I needed. You might need something different. Ask for it.
Be private if you need to
My mom, sister and I didn’t talk about my dad’s cancer and entry into hospice on Facebook. I followed my mom’s lead there. She didn’t post about her husband, so I respected that and kept it offline too. If she didn’t mention the C word, I didn’t mention it. If she didn’t talk about hospice, neither did I. It almost felt like a guarded secret, or like if I didn’t share it online, it wouldn’t be real. This is a very personal choice (to share or not on social media), I just want to give you permission to be private if that’s what gets you through this. Being very public is a perfectly valid choice too. Be aware that the more public you are, the more public you will have asking your for updates, so make sure that is something you can handle.
Try to take care of yourself
It’s hard, but please try. I failed miserably at this. Try to eat healthy and drink water. If someone offers to bring or make you a healthy meal, take it and try your best to eat it. Try to sleep. Try to get some exercise, even if it is just a walk.
Yoga, if I had been doing it at the time, might have helped
I know yoga can bring out emotions for a lot of people and can be a good emotional release. There should be yoga for grief. I think it would be healing. Maybe it isn’t yoga for you. Maybe it’s swimming, hiking or massages, or dancing, journaling, or wine. Try to do something that makes you feel relaxed, or gives you a sense of peace.
Take a picture
My dad’s cancer progressed very quickly and his physical appearance changed very quickly. You might not want to remember your parent looking ill. But please take at least one picture. I took just one – of my dad and my son. My son’s back is to the camera because he’s giving my dad a “snuggle.” I love that picture, even though my dad is obviously ill in it. He’s smiling, and he’s touching my son. I wish I had taken just a few more pictures.
Talk, talk, and talk some more
It’s very easy to bottle everything up in the name of “being strong.” I was working with college students at the time and felt I needed to maintain composure every day. So I tried to avoid the subject at all costs. I didn’t want to bother anyone. In hindsight, I think talking more would have helped me, and everyone around me would have forgiven (and understood) any crying I may have done as a result. And before you think I was completely strong, I had at least two public big ugly cries, (maybe three), at my place of employment during the short time my dad was in hospice. Having a parent in hospice, or just losing a parent at a young age, can be a very lonely experience. It was something I thought about constantly, but I didn’t always give my thoughts a voice.
You’re allowed to tell people to back off
Some days you will just want to pass the time and pretend everything is normal. You might not want to be asked how you are feeling or how your sick parent is doing. My answers would be “I’m terrible, this is the worst time of my life” and “awful, he’s dying.” You might not want to be hugged by well meaning people, especially if your goal is to get through the day without crying. Set up boundaries. Tell co-workers and friends – no hugs, no questions. They should respect your wishes and let you come to them when you need to.
Everything you think and feel is okay
My dad was only in hospice for six weeks. That is a short period of time in every day life, when all is well. When you are watching your father, brother, or husband die, it is an eternity. There were many times when I hoped he would die soon. I wanted it to be over – for me, for him, for my mom, sister and the rest of the family. There were also times when I felt very angry. Angry at my dad for smoking. Angry at every person in the world I saw smoking. One day my mom told me the hospice nurse had been by to check on dad and said that he “looked really good.” That really pissed me off. Looked really good? But he’s still dying right?
Find your people
You might not be ready to read this yet, especially if your parent has just recently entered hospice care. So skip this part if you need to. My dad died. Hospice was only short experience for my family. This sounds terrible, but my people now are people with dead dads. I have learned to not be afraid to ask morbid questions and for more details. How did your dad die? How long ago did it happen? What was it like? Was it sudden? Was it expected? Did he suffer? Were you there? How was the first year after he died? Does it get easier? Does the pain go away or lighten over time? What was your dad like? People usually like to share their stories. I think we both feel comforted and less alone when we trade stories of our experiences losing our dads.
This has been very difficult to write. I didn’t get into as much detail as I had hoped to, as my own grief from the loss of my dad less than a year ago is still so fresh and so painful. And maybe it wasn’t coherent. I do hope that I have provided something useful for anyone else who may be facing the heartbreak of a parent in hospice care.
If your mom, dad, or any other loved one has been entered into hospice recently, or in the past, feel free to share your story here in the comments. You are not alone. I’m sending you a big virtual hug. <3