A Blog Post I Wrote.

[Treebywater]

I posted this to my blog, which is here: http://www.newwaylc.blogspot.com/ I thought I would share... g

My Thoughts on How to Help When Someone You Love is Terminally Ill

After going through the "last days" stuff both as a primary family member/caregiver, and now as a friend wanting to offer as much support as possible to our friends now experiencing the bittersweet time of good-bye, I want to offer my thoughts on "how to help."

I want to say that I don't know everything. I've bumbled and fumbled on both sides of things. But I remember how I felt as a daughter watching her Mom slip away and I know what I've seen as a friend offering support and I have some general thoughts on how to really be of help.

I think a lot of this probably applies to all stages of cancer, but it is the journey of the last stages that has caused me to do this thinking and writing.

First of all--The words, "Let me know if you need anything," are truly some of the most empty words on the planet... Yes, I've used them. They are what fly out of your mouth because you really do WANT to help. The sticking point is that you have to put feet and hands to the words. Put a little action behind it. People who are dealing with terminal illness themselves or as a family member don't have the energy to call when there is a need. It's difficult to rally your mental capacities to a point when you can put things together enough to say, "Such and such said they'd help... I'll call them."

So instead of saying, "Let me know if you need anything," use a little common sense and figure out what might be needed. Bring over food. Our friends Sarah and Larry brought food at least once a week when my Mom was ill. Every week we looked forward to it. We knew that there would be non-cancer centered conversation, good food, friendship, something to laugh about, and a lot of hugs the nights that they came. It was wonderful.

Offer to clean--The last thing you want to do when your loved one is sick and time is limited is clean your freaking house. Laundry is a plague. Dishes are an abomination. They stand in the way of time together and they aren't very much fun on a good day.

Be a physical presence--the whole way through as much as possible. Don't be afraid to call. Don't be afraid to visit, as long as everyone indicates it would be welcomed and beneficial. Nothing helps more than a hug and a shoulder to cry on.

Don't wait until the 'last days' to check in and visit. I know, I know... You'll feel bad because you missed your chance and you have to take this one last time to see that person and say what needs said--NEWSFLASH--THE FAMILY needs that time. If you can be there to be of a support and it is WELCOMED by the family, then be there... but in doing so facilitate time for the family to be alone to say what THEY need to say. THE FAMILY AND THE SICK PERSON are the ones who are important, NOT YOU.

To add to that, I don't think there is anything quite as offensive to me as people who don't seem to care until the drama is at it's height. Cancer sucks all the way through. Having a loved one suffering with cancer sucks all the way through. It might not play like a T.V. drama to go over after the initial diagnosis and during treatment, and to be supportive when things are normaler and even a little bit cancer-boring, but you're needed then too. If you don't show up then, I might question your lack of salt as a friend. Then there's nothing but motives to question. And from where I sat as a family member, that hurt. A lot.

All this to say that sometimes it is helpful to have a hand to hold as you sit at "the watch." Sometimes what you need is a person to sit with you and your family member and be quiet, to hug you when you break down and realize that your family member can't hug you back anymore, and won't ever again. Again, follow the lead of the ones you are supporting.

This is something that is important in all parts of a journey with cancer, whatever the outcome: Don't fixate on the cancer, or the prognosis. And at the same time allow people to express where they are without guilting them. Allow for venting about how much it sucks, or excitement about hair growing back after chemo. Do so by making room for them to talk about it. Do NOT make things all about cancer. There is a balance that can be found between talking about things that aren't depressing and allowing a person to talk about where they are. Be sensitive enough to find it. Usually it comes down to following the lead of the person with whom you are speaking.

Know when to butt out. I suck at this sometimes. I do. I want to help so badly and I feel so much better when I am physically doing something to support people I love that I can be overbearing and TOO present. But this one really is key. Ask--"Do you want people here? Is this a help to you?" And if you get the sense that company is overwhelming for the person who is sick or for their family get the hell out.

I guess what it comes down to is this--Realize that the time that a terminally ill person has left is precious. What is happening to them is all about them, and all about their family. Anything that you can do to maximize and enrich the time that person has with those closest to them is a help. Anything that takes away from that is not a help. It is, to be quite blunt, a burden.

So that's the Val primer. I don't claim to know it all... but this is what I've felt from the seats that I've had in loving people dealing with this disease.

[teresag]

Well done, Val. Only I do have to disagree with this:

If you show up at the end after not offering support the whole time, it doesn't really help.

Would you actually have preferred that these folks never showed at all? I tend to think that people's intentions are good, and they do want to visit and help, but they don't because they don't know what to do or what to say. Or myabe their reasons are selfish, like fear that they will cry in front of others or feel bad afterwards. Which stinks as a reason to avoid the family and the dying person, admittedly. They need to read things like your blog!

[Treebywater]

Well done, Val. Only I do have to disagree with this:

If you show up at the end after not offering support the whole time, it doesn't really help.

Would you actually have preferred that these folks never showed at all? I tend to think that people's intentions are good, and they do want to visit and help, but they don't because they don't know what to do or what to say. Or myabe their reasons are selfish, like fear that they will cry in front of others or feel bad afterwards. Which stinks as a reason to avoid the family and the dying person, admittedly. They need to read things like your blog!

In general, I think that doing something is better than nothing even if you miss the mark, BUT... those last days with my Mom I wanted to be MINE and DADS. I was willing to share only with people who had always been there for my Mom. With my friends now--my friend Jennie is watching people march in to see Bob and "chat" with him after not being there at all in the last few months. This needs to be THEIR time. So I think my point is, if you aren't close enough to the people or aren't willing to make yourself uncomfortable until things are dire, then honor the need of the family to be together instead of barging in and taking up precious moments that they need to have together. Does that clear up where I'm coming from on that?

[Frank Lamb]

Val,I feel this was a good post for this forum.I'm sure there are many who will want to help someone and not know how to offer or just do it.

[Treebywater]

BTW--this was aimed more at the non-primary family members/caregivers people... And I am editing to add that in general I didn't think of anyone who uses this site as the 'intended audience.' I am really speaking to folks more on the peripheral sidelines of things... Which is pretty much no one here. (So I probably shouldn't even have posted it, eh? )

[Connie B]

Everyone's different Val in times of sadness, illness, and sorrow. There is no right or wrong or do it this way or that way in what people may or may not offer during difficult & trying times.

I honestly believe that people mean well from there hearts during trying times. They are trying to be gentle with us during our trying times. Offering some support and understanding at a very difficult time doesn't come with directions as to the does and do nots during that difficult time, because everyone's needs are different.

People don't always know what to say or what to offer, so they say what there hearts tell them to say or offer. They mean well.

I remember feeling just like you 18 years ago after my mom died as well as during her last months here on earth. But I honestly have a different feeling and or view about those issues today. As I do with helping people that have lost a loved one or are in the process of losing a loved one now. Time does change our views on how we look at things.

I honestly feel that what you are saying is what YOU went through, and it may not be what others are going through. As I said, everyone is different.

This journey is different for everyone. Caregivers and Survivors alike, and I know I can say that because I have been on both sides of this fence. It SUCKS no matter what side your on.

Share with us what did and didn't work with/for you during your journey, not what you think is best for all or what you think is the right and wrong thing to do. That's a very difficult call to make for others.

I know what your trying to say (((((VAL)))))). I also know your really missing your mom. (((VAL)))).

As for what other's may have missed out on or may not have? Well, that is there loss or maybe not. Count your blessings that you did what you did and that YOU are comfortable with it, and leave it at that.

The only feelings you have to account for are yours. If your okay with what you did and how you did it, that's all that matters.

[Treebywater]

I didn't write it as a "How to" or a "This is the only way that works." I tried to make that clear with my verbage... I did write from my journey and made that clear as well. This isn't something that I'm trying to shove down people's throats, or even something written out of anger at people who didn't show up for us...

But I think a lot of people don't help because they don't know what to do--just as you said, Connie... So, I wrote this on my blog to offer some suggestions based on what I've experienced. I wasn't trying to probe motives or the 'whys' of why people do or don't do the things they do. I was trying to offer guidance to those who might not know what to do--of course based on my experience.

Another thing that I was trying to emphasize is that everybody IS different. That is why I think it's so important to follow the lead of the family.

And for the record--I edited the part about it not helping if you only show up at the end, because I can think of instances where such help and support would have been welcomed. I don't think that is the main point of the original blog post, though.

Really, this isn't about just about Mom and my missing her right now, and I didn't open it up because I wanted to talk about my feelings in those regards. It's not even me griping about people's short-comings. It's simply a collection of thoughts that I had after my experience with Mom, and now an experience as more of an 'observer' with friends of ours.

If I came off as though I thought I had the answers about how all of us are supposed to act when the horror that is cancer hits us, I truly apologize.

[karenl]

Val, I thought your post was very well written, and I totally understood where you were coming from.

The needs and wants of the dying person and those closest to them are a priority. If they want a house full of friends and relatives in the last days, all well and good......but if they need to close ranks on the outside world, then that should be understood and respected. Personally, I didn't want anyone besides our immediate family at the house during Mum's last week.....even my own husband and children were only allowed short visits with me!

And I agree, people who have been absent during the course of the illness, should not turn up at the last minute just to make themselves feel better, unless the dying person specifically wants to see them. I think it is selfish in the extreme.

Thank you for writing this post, I'm sure it will be helpful to many people.

Love Karen

[Connie B]

Val,

You don't need to apologize, you didn't say anything wrong. I guess some people read things a little differently then others, but you sure didn't say anything wrong.

You did say these were "My Thoughts on How to Help When Someone You Love is Terminally Ill" I guess after reading what you wrote, those words just vanished from my thought pattern.

[teresag]

(So I probably shouldn't even have posted it, eh? )

Dfinitely NOT! I'm glad you posted it here, and I think many people will learn from what you wrote. Remember there are lots of "lurkers" who read but don't post here.

It takes guts to look back over a painful journey and draw out something that may help others.

[Littlegirl]

Val - I enjoyed your post and I am glad that you shared it with us.

Karen

[Jana_W]

Val, as usual, I totally clicked with what you wrote. I had a few friends who were suddenly wanting to call me and see me and expressing such deep heart-felt emotions and wanting to attend Mum's funeral after they found out Mum had died, but they had been remarkably absent of concern for most of the previous eighteen months. And most of these people didn't pick up the phone to see how I was in the weeks and months after Mum's death. I am fortunate to have a few very special people who did help me and continue to help me, but I had great personal disdain for what I also felt were people joining in at what you referred to as the heightened drama.

Oh, but you did make my cry like a baby when you referred to the recognition that your loved one can't hug you back as they are too weak, and won't hug you ever again. Wouldn't we give almost anything for just one more Mama cuddle? I hope Mother's Day wasn't too rough on you.

Thanks for sharing your blog with us.

Love

Jana

xxx

[sues]

Val ,

As the person that IS terminally ill you helped me a lot. I felt that these people that don't bother calling seeing me etc for months - I didn't want them to be welcomed - but after reading your post that has changed my mind - there are people that just don't know what to do or say in these situations. I am not close with my sisters and brother -but as soon as they knew I was terminal they come out of the woodwork. We had a reunion in Las Vegas in February. I spoke to my brother ( that I swore I would NEVER speak to again ). When we all got together I decided life was way too short to hold a grudge till death. I'm still not CLOSE to any of them - but we all live in different parts of the country. At least that's the excuse I use . But we had a GREAT time.

Thanks to you - even the lady that came up to my husband and wispered to him "how long does she have to live " is also welcome in my home.I do believe people just don't know how to handle someone that ill - they don't know what to say ....I think maybe they think they should be able to give us some kind of hope - not sure - like you said - a hold of a hand - knowing someone is there - a funny joke -we're not looking for them to CURE us - just visit !

Thank you again Val -God bless you and your family

sue

[mamasbabygirl]

I totally agree and am living what you said Val.

JUST DO IT. Visits for my mom mean everything right now. It means that I her daughter can know that while someone is there she is not being neglected if she can't reach her phone or if she has to go to the potty someone can go get an aide to help. When mom comes home, visits will mean that we are laughing instead of focusing on all of the laundry, cleaning and needs that exist while mama is sick. Visits will mean that someone is paying attention to my kids while I am cleaniing my mama. It means so much.

Thanks for sharing...

I just love you!!

[Stephi]

Val, thank you so much for this..you have written what is in my heart..It does hurt so much when friends and family used to "show up" to p lay cards, eat, etc. but when you need them to come or call, take it on themselves to "do something" without being asked, and to be senistive to what is going on..well, so many just don't..It is almost like they have a fear that if they are around cancer, they may "catch it"...

My dear Mother was dx with pancreatic cancer in Dec. and my husband has been going thru lung cancer treatments since April of last year...in between all that I had my 6th heart attack, this time to be put on a vent. for 4 days...Although we did have alot show up at the hospital, (my mom was in hospital, and I was taking care of and staying with her when I had the heart attack), at the beginning,many didn't come back or call for days...HELLO!!!!!!!!!!!! what is wrong with this picture????

Our immediate family stepped in with my son coming from Calif. and then switching off with our dear daughter in law....and I have 2 wonderful friends who I couldn't do this without..My mom and I are 1 hour away, so time spent on the road is alot....

Your blog gives us food for thought and an opportunity to send it on to those who have "asked what they could do" in the past...You have said it well..thank you so much

Stephi

[Gwen, Daddy's girl]

Thanks for the tips. I have been the one who said call me if you need anything. I have been the one who said or did nothing because I did not know what to say or do.

I know everyones' needs are different. As I learn from you all I will try to offer specific help and ask when I may come, How long to stay, etc.

I would love to hear more opinions from more people.

[ztweb]

Wow! These are some amazing words. Thank you for sharing them with us. I still feel like I fumble and fumble for the right things to say around my mom and dad...and I KNOW that I am searching for that balance that you talked about with talk about the cancer and non-cancer talk. It is a hard balance to reach, especially since this is all new.

God bless you and thank you!