Because this is a tough one to write, let me just get down to it. Death is not a spectator sport.
When someone is "sent home", there is nothing left to try, Hospice is called in (or not), and you receive word that a loved one or friend is dying, please
Understand this is not about you, your schedule, or what you want to do. At. All.
Those in the household are going through a great deal, as is, obviously, the person who is preparing to die. Dying is hard work. It's not pleasant. It's ugly. It's dirty. It's smelly. There will be lack of sleep, lack of eating properly, lack of hygiene, lack of smiles, lack of patience, lack of wanting company.
If you do not live in the household...you are company. I don't care if you're children of the person dying. When you go, go prepared to HELP! Cook! Clean! Run errands! Sit with your parent so the other can shower and nap! Pitch in! If they don't want the TV on, don't turn the TV on. The house rules will have changed. Deal with it or stay home. Hate to be so blunt, but chances are really good your parent who is looking after the one who is dying will think those things but not actually tell you. But they'll be so glad when you leave and they'll dread your arrival if they know you'll expect to be catered to...so I'm not as nice as your mama or daddy.
The appearance, and often, the personality of the dying person will change over time as the death process sets in. There may be bloating. If the cause is cancer, there will be a lot of weight loss. A lot. Down to skin and bones. Their coloring will change. If the cause is melanoma, there will be a massive amount of painful tumors throughout the body. If these tumors present themselves on the outside of the body, it will be beyond awful to look at. Don't count on those tumors being hidden when you visit. If it's uncomfortable to the patient, they won't be.
Which is why many people who are dying DO NOT want visitors. They really do not want to be seen as they are. They don't want to have to talk or smile. Now, some may. We're all different. Don't say, "Well, if it were me, I'd want..." It's NOT you!
So...call ahead. If you want to drop by some food, call first. If you want to stick your head in and say, "hi," call first and ask if that will be all right. DO NOT just show up at the door and expect to be ushered in.
You do not know what's going on inside.
Do not arrive at the door and see a sign asking you to NOT ring the bell and assume that means everyone but you and ring it anyway.
What can you do?
Pitch in. Run errands, go grocery shopping, check the mail, walk the dog, change the bird cage. Babysit at your house. Decorate the outside of the house if it's Christmas. Do things on the schedule of the household...theirs, not yours and be flexible if there's a change and gracious if they say "No thank you." But, whatever you do, CALL first!
And pray. Pray for peace and comfort.
As I say, everyone is different and all households are different. But, when we get right down to it, dying at home is pretty much the same for everyone in some ways. Body systems shut down. Appearances change. Often personalities change. There are sights and smells that can be embarrassing but cannot be helped, but those in the house don't want those outside the house to see them or smell them. It's very raw and emotional inside that house as people deal with a great deal.
This time is about them. It's not about you.
Your time will come and you'll understand.
Until then, make them grateful they know you!
Dear Carol my name is Norah and Iam in stage three two. Iread your blog faithfully andsometimes I find it tough to read. It is so real and heartrendng. Today when you were describing the tumors Igot scared cause I am not on any treatment. If possible Iwould like to be your facebook friend. sincerely Norah
ReplyDeleteHi Norah,
DeleteBy all means! Please friend me https://www.facebook.com/revcaroltaylor . Also, please connect with me at Melanoma Prayer center on FB...it has a message function. And feel free to post and share there also.
The tumors are when nothing else has worked, the disease has run rampant, and death is near. That's the reality of melanoma. HOWEVER!!!! However, many are seeing remarkable things happen thanks to new treatment options when the tumors spread.
If you read me much, you know my story and that I opted not to do Interferon (the only thing offered in 2008). Not having done treatment, but controlling this with surgery, works for me. So far. If I ever get to stage 4, I'll reassess based on what's available then. Don't let fear of this and the "what ifs" get to you.
This wasn't written to invoke panic in people with melanoma. It was written to help families dealing with death in the house, from any cause, and educate their friends and family.
Grace and peace,
Carol
Well said. In your post and in your comments above. As a nurse for almost 30 years (and melanoma patient for 9 years, stage IV for 31 months) I have seen (and thought) a great deal of death. In our society these days...death is a hospitalized condition that is distant and foreign to the world of most people. Ironic...since it comes to us all eventually. Recognizing it for what it is...as you put so well in your post...makes passing an easier experience for the individual as well as those around them. Thanks for putting it out there.
ReplyDeleteThanks, Les. We're in the professions that have to deal with it, but it does boggle my mind that so many people want to pretend it doesn't exist. I guess I was lucky. I grew up in a family that talked about it. I had an aunt that when she passed around family pictures, one could be folks around the Christmas tree and the next one could be someone looking at you from their casket!
DeleteBut, I'm starting to see that some people want to turn it into that "spectator sport" I mentioned...maybe it's curiosity, but families don't need it.
Anyway, it needs to be out there! Thanks!
Carol - Raw but so true. I was so blessed to have my sister with me when my Stage4 husband went to heaven. She was my gateguard & she screened all visitors & calls. She saved me from being taken away from final prescious private moments. You are right each person may be different. My husband enjoyed SHORT visits from CLOSE friends & family. Acquaintances were turned away. Hospice came & said he had about a week But the Lord cradled him in His arms 14 hours later. So it is important to seize every moment cause only God knows the time. I treasure memories of his final hugs &
ReplyDeletekisses & words. It's been 3 1/2 years & I cling to God's promise that we will be together again. He was special -with humor & love that touched many. He lived a full 9+ years with stage 4. He did not let his life be dictated by melanoma. Treatments are truly improving every year. He participated in several experimental trials. He was proud to help cancer centers learn more about this disease.
I'm sorry about your husband, Jackie. He sounds like a great man and I know we in the melanoma community owe him a huge debt for participating in those trials!
DeleteHospice, like doctors, don't know our days. AS hard as it must have been, your husband was spared a great deal of suffering. And you will be together again, one day.
Thanks for connecting with me. Prayers and blessings!
We had moved across country 9 mos before my mother died (we brought her with us). In caring for her, I had made very few friends accept at church and exercise groups where I could take her. When she was dying, NOBODY came, only the priest called, nobody left food, only my bro and his bossy wife. When we came back from the funeral, I felt like NOBODY. So please remember your new neighbors, even if you haven't met. A card will suffice, food is better, an invitation is nice.
ReplyDeleteI'm so sorry! Thank you so much for sharing this most painful of experiences. I don't know what to say, I am so sorry this happened to you!
DeleteGrace and peace,
Carol