Ashamed: I think about (and plan for) dying. Do you?

Wow, Shirley, thank you so much for this more than generous response! I don’t profess to have all the answers but it becomes a little more clear when we’ve faced an event that puts things into perspective I guess.

It’s so much easier going through life thinking we’re immortal, that we have no expiration date. It’s difficult to talk about death and equally hard to talk about a serious illness to someone who isn’t in the same mindset.
Unfortunately, the people we need to hear us, don’t always get the luxury of time until “they” are ready to listen! When we’re gone, there will be a lot of unanswered questions!

I always remember the aha moment I felt when my mom said, “Lori, you have to listen to me! You may think I’m going to live forever but I’m not. Tell me, what are the first 10 things you’d do if I just keeled over tomorrow.” Well, um…sounds of crickets.

That’s a question you could ask your adult kids! If there are things you need to tell them, there is no time like the present. Have them bring over a take-out dinner and tell them you need to have a heart to heart. Explain to them about your COPD and how it’s impacted your life. If that isn’t feasible, write them a long letter or write in a journal daily so that you can share it with them.

Shirley you’re doing great by starting to tackle the little things that you are able to do. As far as asking for help, I can so empathize with you. It’s difficult to go from being that superhero mom who plowed through anything to keep her household running to one now out of energy and feeling a shadow of her former self. But our grown children still see us as we were when they were young. It’s very easy for them to overlook our advancing years and declining health.

It’s important to be direct with them at this point. Being subtle and sending out hints is actually allowing them to continue to ignore the situation. It’s like being in the kitchen on Thanksgiving and hoping someone takes the hint that you need help setting the table and all you hear are people yelling at the tv for the football game!! 🤪

As she got older, my mom was a great one for not directly asking for help but then she’d complain to my sister who lived 1,500 miles away that I didn’t do the right things. I was working, raising a family, PTA, church council, etc. So it was very frustrating for me to have to guess what she needed when all she had to do was say, “Can you clean out the fridge for me? Or, I have a box in the closet that I need to get down off the shelf.” I tried to be very attentive and wanted desperately to help her out but I wasn’t a mind reader. Make me a list!

So Shirley, I say it’s time to cash in those “help” chips! Make a list! It’s not imposing on your children to have them lend a hand. Maybe once or twice a month they or your grandkids can come over to do a little cleaning, stock your freezer with food, run errands for you, do some yard work or wherever you could use assistance. Again, make a list!

I know you’re being respectful of their time but you dropped everything to raise your kids and you worked, ran a household and I bet you took care of your mom and dad too! It’s now your turn to receive some assistance Someday it will be too late and you need a hand now. You might be surprised at their willingness if they get clear requests and not just hints.
What do you think????

@mamawnebel Lori has hit the nail on the head: "You might be surprised at their willingness if they get clear requests and not just hints."

My Mom and Dad were the extended family caregivers all my life, and expected us kids to pitch in, no excuses. It paid big dividends during my Mom's long 5 year decline in health.

When my Mom needed almost daily help, I had 3 brothers that thought (and said) "You girls are taking great care of Mom. Thanks!" and they went on with their (busy) lives. At the same time, my Mom was saying "I never see P & D & B. I guess they're just too busy." And my sister and I were saying "Yow, we need help!" Finally, I asked my Mom, "What would you like the boys to do?" Her response, "Weekends are lonely here and I want you girls to have some time off. Maybe bring the grandkids to see me? Or ask me over for dinner?" I said "Ask them!" As a result, one brother began to come on Saturday, with one or two grandkids, do Mom's meds (a big task off my list!), do a few chores, and maybe play a game of cribbage. Another routinely picked Mom up for Sunday supper with his family, and stopped for stuff at the store if she needed it. The third either took Mom out for Friday supper (usually with one of his kids), or brought in requested takeout.

So, she got to see everyone, and everyone had a stake in her care and stayed attached. Since they only saw Mom once a week, the boys were able to alert my sister and me to subtle changes we might miss in seeing her daily.

At the end there were no regrets, no thoughts of things left undone and we all had a richer life for it. Please trust that your children and grandchildren can step up, in spite of their busy lives.
Sue

My wife was also jus diagnosed with lung cancer that has spread to her liver. She is the strongest one in our family. The Drs feel there is a possibility to cure it with a trial clinic .nGoing to do 2 months of chemo and see how the tumour cells react and if shrinking they will do another round of chemo for 2 months. If they keep shrinking they will use radiation to get rid of whatever is left of the tumour on lung and tumour on liver.

@jimclow Welcome to Mayo Clinic Connect. I'm glad you found us here, and hope you have had a chance to wander through different discussion threads here in the lung cancer group.

That sounds pretty positive for the approach your drs want to take on your wife's metastasized cancer! And having you as part of her support team gives her an added benefit. I hope you will continue to post and let us know how she does,
Ginger

Hi Colleen: Such great advice. I thought I would take it slow and easy so I asked my daughter and granddaughter about consignment places where I could take some of my things and sell them while I have the strength to do it. I thought it might get them on the road of thinking about my disease and that if I start talking about small easy things that aren't morbid, they may be more inclined to help me with those things and hopefully make it easier for them to help me later down the road with the bigger things. I don't know if that will help but I'm just trying to come up with ideas that won't scare them yet get them involved. Since we only see each other about once every week or two they don't see they don't see the real problems I face with daily chores. So asking them for help with small things like help taking things to consignment stores with me might be a start. Your thoughts? I'd really appreciate your honest opinion or any advice Thanks so very much, Colleen. God bless you.

Be at peace,
Shirley

Lori, after carefully thinking about what you wrote to me, I think you are so right. When my daughter had breast cancer I couldn't read her mind on what she needed but common sense told me she needed meals cooked, laundry done, general housekeeping done. With 3 little children of her own that was easy to see what she needed. But I didn't know what she needed spiritually or physically because she kept those things inside and it tore me up that she wouldn't open up. I'm not going to do that to her or my grandchildren. I'm going to do what you suggested and write the a letter. It's not just the COPD that prevents me from doing things. I have RA, severe osteoporosis, my entire lumbar spine has so many problems that it's hard to walk, stand or bend and I have scoliosis and heart disease. So I'm not healthy in so many ways. I just pray that they will open their hearts and not be so self-centered. I don't like to be so negative about them but they've been raised to be self-centered so it may take some time for them to give of themselves for someone else. Anyway, thank you so very much for your great advice I love this group because of that. When I feel like I'm lost and confused, it's you and others that seem to help me find the right path and clear so much of the confusion. I'll do my best to keep you posted on the outcome as long as it doesn't take them too long. God bless you.

Be at peace,
Shirley

Good morning Shirley, I really like your idea about asking for help taking things to consignment. I can tell you from experience with my busy children and siblings that the ask should come with a specific time frame and details.

For example instead of "help me sometime," phrase it more like "Would you please bring some boxes and wrapping material and come for 4 hours before X date. Is there a good day for you? I'll have [coffee, soda, wine]..."
Or "Please help me sort through my closet and take out the clothes I no longer wear and take them to the thrift shop."
Or "Do a thorough vacuuming and mopping, as I can no longer do it myself."

Also, inviting them one on one means more work and less visiting among themselves will get done, unless you want to host a "work party" and order pizza at the end...make it a real party?

Just a few ideas - maybe to get started you can make a list of tasks, one-time & weekly/monthly and prioritize.

Another thing to not discount - ask for help as a gift instead of "stuff" on gifting occasions.
Please don't give up - remind yourself that we all get to the point where we need help to keep going, and there is no shame in it.

You will be doing your grandchildren a favor by teaching them it is part of the cycle of life - when they were small, you helped care for them, now they can return the favor - and show their friend and families how this works!
Sue

Good morning Shirley! Every day is a new beginning, isn’t it. A chance to start fresh and make changes. You’re getting a wealth of knowledge from so many of us who have faced similar physical challenges and having to ask for help. It isn’t easy!

But wow, I applaud you for sorting through what’s appropriate for your personal journey and taking the steps to get help, clear the air and perhaps mend some fences or form deeper bonds along the way.

Just remember, words are powerful. You don’t want to write anything that will burn bridges or make your daughter feel guilty. So one of the tricks I use when writing what could be an emotional letter, is to type it all out first, just as it gushes out of my mind. Stream of consciousness letters.

But then, I don’t send that one!! I take the time to edit anything that could be hurtful or laced with guilt or challenging in a passive aggressive manner. Ok there was that letter I sent to a horrible neighbor one time…that bugger was raw and unedited! Hahahaha. She had it coming… But to people I care about, I re-read it as though I was the receiving party to see how they would feel and then reconstruct the sentence to be a little milder. Keeping in mind, this isn’t for my casual correspondence with friends or relatives. Those letters are free from constraint.

So, when you write your letter keep it lighter, not maudlin or guilt laden. But it does sound like your kids don’t know or quite comprehend the level of pain you’re in or how difficult it is for you to manage your household anymore. It doesn’t mean you can’t live alone, it just means you need assistance and that’s not too much to ask of your kids. Hahah but don’t say that!!

And I’m sure you didn’t raise your kids to be self centered. I think you love them to pieces and are an amazing mom who will always be there for them, right? But as life would have it, we all age and at some point we need assistance to get some of the more challenging things done. Believe me! Look under my bed at the dust on the carpet. I used to pull the furniture from the walls twice a year. Now I can’t remember the last time. Neither my husband or I am in the position to haul furniture anymore. So…there’s that. And my daughter lives 5 hours away so relying on her for that is difficult.

Getting things ready for consignment shops together with your daughter and grandkids, wow, that is a really good suggestion from Colleen. The stories will pour out as you go through things!! Love it.

Together we can all help each other! I’m so happy you’re with us on Connect. We’re that family you can talk to without fear of them not inviting you for Thanksgiving. Hahaha.

I’ll be eager to hear how things go! Hugs!

i was first diagnosed in 2014 have been planning for death ever since

Jeffahuber... You were diagnosed in 2014... it is now 2021... How many things have you lived and learned during this time? How many things you are grateful for...? Stay with us. It is not to us to decide when to die... Most respectfully, LasElidas