“It’s always sudden.”
That’s a quote from a show my Mom and I used to watch. The point the character was making was that no matter if someone you love passes without warning or if you have years to prepare, it is always sudden.
When I finally came to terms with the fact that my Mom had stage-4 Cholangiocarcinoma, I thought I understood that I would have to live most of my life without her. But I’m telling you… the most empathetic person in the world will not understand this pain until they go through it themselves.
If you do not have a decent relationship with your parent, I’m sorry. Perhaps there are ways to make amends- there is no time like the present. If that is not possible, this won’t help you. But if you have a Mom or Dad that did their best raising you, lets you know you are loved and tries to help you with whatever time, talents or resources they possess, this is for you.
Here are some things that helped me cope with my Mom’s death-and also some things I wish I would have known. I urge you to read this even if it is hard, and sad- even if your parents are healthy as can be. This is the kind of information that you don’t want to acquire too late.
1. SPEND TIME WITH YOUR PARENT. This may seem like a no-brainer, but life gets hectic and hard when you are trying to maintain a reasonable amount of normalcy while your parent is dying. The emotions can bring you to your knees and make you want to run as hard as you possibly can all at once. It’s human nature to want to run from pain, but sometimes you have to be strong. If you are close, go over as often as you can. Talk about anything and everything, or just sit with them. Remember everything. You may feel like you need a break because it is too hard and too sad, and that’s ok. But try to remember that you will never get this time back again. If you live far away, make as many trips to visit as you can.
I kept thinking that I needed to save my personal days for my Mom’s funeral and for grieving… but I wish I would have taken days off to just spend time with her. I honestly wish I would have taken a leave of absence from work, but I never knew the right time to do it because we didn’t ever really know how much time she had left-until she drastically changed in the last few days.
2. HOLD THEIR HAND. Think you can’t? You’re wrong. Just because you didn’t have that kind of relationship in the past doesn’t mean you can’t start now. I could never bring myself to do this, although I loved my mother dearly. I won’t go into all my reasons why I didn’t, but I will say that I would give anything to sit across from my Mom today, take her hand, and tell her how grateful I am that she loved me so well.
3. Stop trying to cheer them up all the time. Dying sucks, plain and simple. It’s hard and scary, even for the most optimistic or faithful of people. It’s great to make them laugh occasionally or do something fun to take their mind off of their circumstances, but your parent doesn’t need you to be their constant sunshine or their tireless cheerleader. Often they need to simply hear, “I’m sorry. I hate that this is so hard for you.” Sympathy is sometimes the best thing you can give.
4. This is the only life your parent will ever have, their only chance (unless you believe in reincarnation.) Since that is the case, if they have faith, being secure in that faith is of utmost importance. Ultimately this is up to your parent… but if they want help, be there. My Mom needed constant reassurance from Bible verses about many aspects of death and dying, especially that Jesus would keep her safe from evil after she passed, and how wonderful Heaven would be.
5. Make sure they know who you are. Do you write? Have them read some of your work. Do you woodwork? Bring them a sample, or show them pictures. Think of all the things that make you “you,” and be sure your parent is aware of them. Then do the same for them.
6. Do a little research. Join forums or groups with people who have had similar diseases, listen to the survivors if there are any and learn from experts in the field. There is likely nothing new that you will learn to help your parent, but at least you will know that you tried.
7. Ask for advice for imagined future events in your life that your parent may miss. Write it down. If you can, start a special notebook for them to write in with questions you come up with ranging from their favorite song to their thoughts on God. Find out all the little details that you might want to know someday- their first love, how they met your other parent, what their childhood was like, etc. You will cherish their handwritten words someday. If they are too exhausted to write it, record it or get it on video.
8. If you are not a parent or have not already discussed this, thank them for all the countless hours they spent rocking, bouncing, bathing, feeding you, etc. Babies are such a miracle, and so much work! If you have a baby of your own someday you will be overwhelmed with the pride, exhaustion, fear, joy and love this baby brings out in you; You will be amazed at how much you must have been loved and saddened if you don’t get to discuss it.
Like many others, I often took my Mom’s love for me for granted. I had an eye-opening experience after having my daughter. See, my Mom lost her first baby 3 days after he was born due to Anencephaly. I can’t imagine the pain of carrying a baby full term, going through labor and then losing him. My first baby was taken to the NICU immediately after birth, and although she was only there a week, it was heartbreaking for me, probably the hardest week of my life. When I got to take her home I was so relieved, so grateful, so enthralled with the little beauty in my arms. I immediately realized after coming home that I was the first baby my Mom got to take home after her terrible loss. I mourned the fact that I never got to discuss that with her, or that it never occurred to me how much she must have loved me because of it.
9. Make a print of their hand in cement. Someday when you really miss them, placing your hand where theirs was will comfort you. (This one was a little awkward honestly, Mom even made fun of me a bit for being so sentimental. I am very glad I have it though.)
10. Make an “I Miss You” jar. One of the worst things for me after my Mom died was realizing that I would never get to learn anything new about her. If your parent is well enough, give them lots of tiny pieces of paper to write down memories, facts about them you might not know, etc. After they pass, resist the urge to read them all at once- save them for days when you feel blue or really want to feel connected to your parent.
11. Take a video of a normal family evening– maybe a dinner or a game of Pictionary. Don’t force it, but try to have a good time and laugh. This will be incredibly valuable to you.
12. Make sure you have a really good, RECENT photo of the two of you. Don’t take any excuses about them not looking good-whether their hair is falling out, they are jaundiced, etc. My Mom was constantly worried about her chemo hair and edema. I realized after she passed that the last good photo I had with just me and her was from TEN YEARS ago.
13. Ask your parent to leave you both a “cheer up” and “happy birthday” voicemail, then save it on a flash drive if possible so you will always have it. Those are two occasions that you will really wish you could hear your parent’s voice. This task can be impossible If one or both of you is extremely emotional, so maybe just keep an ear out for a regular voicemail they leave you that is worth saving.
14. Find out if your parent has a dream that is somewhat attainable. See if there is a charity that will help (there are Make a Wish-type organizations for adults, too.) Also- there’s a Go Fund Me for everything these days- why not this? You wouldn’t even have to mention it to your parent unless you were able to raise enough money, and if you don’t raise enough you can always do something else nice for them, or give the money to a charity benefitting others with this disease.
15. Have a “Life Celebration” party. Invite only the people who were the closest to your parent, then present your parent with gifts and/or speeches to let them know how much of an impact they’ve had on all your lives. This party doesn’t have to be sad or an acknowledgment of death- it can be hoping or praying for a miracle if you wish- the important part is that your parent feels honored. We gave my mom a framed certificate thanking her for fighting cancer so hard for us, and we each presented her a rose with a little thank you card/personalized note attached. My Mom said it was the best day of her life, that she had never felt so special. I am so glad we were able to do it.
16. Keep excellent communication with your parent’s caretaker (if you are not that person.) Call often for updates, especially if your parent is no longer able to speak on the phone themselves. Health situations can change so quickly. If you are the caretaker, be sure to keep your parents’ friends and family updated on their health status.
My mother didn’t really feel like talking on the phone the last several weeks of her life, which was abnormal for her, but she was still herself when I saw her in person. Since I had a cold, I was asked to keep my distance because she didn’t need any further complications. The next thing I knew, I received a phone call that she was dying. When I arrived to see her, my Mom was no longer herself and would never be again.
17. Along those same lines, say what you want to say now. Don’t wait for your parent’s death bed- you may miss it. I would recommend becoming familiar with the medical signs that suggest your parent is reaching the end of their journey, but don’t wait for that time to bare your heart. Many people are caught off guard because terminal illness-especially cancer- can be a series of constant ups and downs- “I’m cured” and “I’m dying” repeating for years. The end can sneak up so suddenly, you may become aware of it too late.
18. Be patient with your parent. Many diseases affect the brain, even indirectly, and can cause your parent to speak harshly, to think you don’t do enough for them or visit enough. They may even forget who you are, or think you are another relative. Do your best to remind them that you care in these times, and try not to take it personally. I bought a calendar for my Mom to use so that she could document anything and everything she wanted, and had her write down the times we visited so that she wouldn’t forget.
My Mother actually developed a condition once where she had too much ammonia on her brain and it caused her to temporarily forget things, even the fact that she had cancer. None of us realized it. She came home from the hospital in an extremely good mood, thinking that she was healthy. When someone mentioned her cancer, she couldn’t believe it, and had to learn she was dying all over again. It was heartbreaking.
19. When it nears the end, make their room as pleasant and peaceful as possible. Hang pretty pictures, surround them with flowers, play soft music, etc. My Mom really seemed to enjoy old tapes of her family playing music together, it brought her back to her childhood. She also really enjoyed listening to the Bible on audio from her ipod. I wish I would have thought to purchase or borrow the Bible on cd to play on a stereo for her when she became unresponsive and stopped using her ipod. Talk to your parent as if they can still hear you. Maybe they can.
20. Be gentle with yourself. This is one of the hardest things you will ever go through in your life. There is no such thing as being a perfect son or daughter. Nobody does everything right. There is always something more you could have done, so you have to make peace with that in the end. You loved your parent. They loved you. That’s all that you need to know.
21. Let this experience change you, but don’t let it define you. Learn the lessons you need to learn, extend a hand to others enduring the same hardships someday, and don’t let yourself become bitter. You may feel like a victim and hate the unfairness of it all, but everyone goes through loss at some point. Make sure not to ever belittle anyone else’s loss. I’d be lying if I said I didn’t struggle with this. It is not necessary to compare your grief to someone else’s and is unfair to do so. My world seemed to halt when Mom died and then a year later, my heart broke when my sweet little dog died too. I loved them both and grieved for both. Not in the exact same ways of course, but they each held a very special place in my life.
Also, do not guilt yourself into a dark corner. Grieving can be a lifelong process… my sister, a nurse, has told me about 80 year old patients that still cry for their mothers. But after you’ve given yourself a little time, rejoin the world. Allow those who are joyful around you to be joyful. Joy is fragile and fleeting and should be cherished where it can be found… Your parent wanted joy for you while they were alive and that does not change when they pass- don’t close the door on it because your parent cannot pass through with you.
[Have you gone through something similar? Leave a comment with your advice below.]