Leaving loved ones

[Claireperth]

I am thinking about my husband of 37 years. Things are not going too well for me and although he tends to not to believe the end isn't in sight, he must be effected by all the latest events (starting trial drug next month etc). Naturally I don't like to dwell on any negative thoughts either but any tips on how to address what he must be going through? My husband has acquaintances through his summer swim club but no family (apart from our 29 yr old son who has his own life) or close friends. He hates discussing anything about my eventual demise which I respect but he wouldn't consider any counselling so do I carry on like everything is going fine? How or what can I do for his emotional wellbeing?

[AvidBooklover]

Hmmmm...this is a tough one as many of my suggestions are ones he would pass on. My thought is to ask your oncologist to see if she or he has some guidance. I am sure that you are not the first patient with a husband in this position, and they may be able to help. Sorry to not be of more help.

My dad lost my mom after 70 years recently and it has been tough for him. He misses her and at 93 does not have a lot of friends still alive (I have told my husband I want friends who are 20 years younger than me!), refuses counseling, my sister lives in Atlanta and I am about 45 mins away. Luckily he still drives, but he also lives in our childhood home. He feels my mom everywhere there, which sometimes is good and sometimes...well, not so good.

[TwithBC in reply to AvidBooklover]

… please forgive me if this seems insensitive; but I’m taken back by the beauty of this—your parents loving each other so much to have been married for this many long years, and “to feel her everywhere” in the home they lived their lives together — while hard, is a hard I would deem if (true love comes with this side; but to have loved at all like this is beautiful.

[AvidBooklover in reply to TwithBC]

It truly is beautiful. He talks about the day he first saw her. She was headed into an ice cream shop with her friend who was dating his friend. He asked who is that girl? I have to meet her. And the rest was history. The two people who introduced them were lifelong friends...and they were at her wake. Amazing lives.

[TwithBC in reply to AvidBooklover]

oh. My. Word. That is a gift—a rare rare gift.

[Bettybuckets]

I have a similar thing going on at my house… but a very involved daughter snd a son who cares but lives in Switzerland… he has his football coaching buddies and some friends but not talking much about what is coming. I don’t know how to advise you or I would take my own advice. We are like a deer I. The headlights for this thing coming at us.

[Adele_Julia]

I’m more sad about leaving my children age 25 and 23 behind and all the memories I will miss and they will miss me at … their wedding, the birth of their first child. I think in 25 years from now when they are in their 50s, I’ll be a distant memory of their life experiences and it grieves me to know I wo t be part of their future on earth. I hold close to the thought that I will see them in Heaven. How do others handle this emotion. Mind you , I do love my husband but he’ll be ok. We’re 58. Blessings ladies

[dcb56 in reply to Adele_Julia]

I understand the sadness about leaving your children behind and missing out on so much of their lives. My biggest concern is how my 26 year old daughter will be when I'm gone. I also have perspective that I hope will reassure you that you won't be forgotten. I was 23 when my mom died of pancreatic cancer. It happened fairly quickly - she actually died from an infection after the surgery to remove the tumor. My family was back east and I was in California, taking summer school classes and about to enter my senior year of college. I didn't know she had cancer when she was first diagnosed in late June/early July. She called me one Sunday in early August, from her hospital bed, to tell me what was going on, two days before her surgery. She said "we didn't want to worry you." We decided I would go home after finishing my classes, and spend a few weeks home while she began radiation treatments. Then, just a week before the date I had booked to fly home, I got a phone call telling me that my mom had fallen and was back in the hospital and "to take the next flight home." I was on a red eye flight. That term took on another meaning for me on the most difficult night of my life. When I arrived my dad's business partner was driving the car while I sat in the back seat with my dad, who told me that my mom was gone. You can imagine how difficult and traumatic that was for both of us. The point I want to make is that I still remember much of this sad event clearly 43 years later, but I also still have many more wonderful memories of the 22 years that she was my mom. I have kept her memory alive by telling people - most importantly - my daughter, about my mom, her grandmother, sharing pictures and many stories. I still think of her every year on Mothers day, her birthday, and the anniversary of her death. My daughter has grown up spending summers with me and her uncles in Maine, in one of my mom's favorite places, on an island that belonged to her family. What I have learned from that experience is that it's important to be open and honest with my daughter, which I know can be a tricky balancing act, between the hard reality and the tenacity and positive attitude that you can keep those bleeping rogue cells in their place. I don't know your story - this is actually my first time writing in this forum, but I do know that there are many treatment options available, and new ones coming along the pipeline all the time. When I was going through my first bout with breast cancer in 2008, I came up with the mantra "hope for the best, and deal with the rest." You may also feel concerned, as I do, to not impose on their lives too much, during what should be a fun and exciting time for them, as young adults finding their way in this world. What I'm trying to do is talk to her at least weekly, visit her when she has time, share any and all occasions with her that she has time for, create great memories while I'm still here and able to do so. I'm also working on a "letters to my daughter" memoir, trying to document as much as possible, so she won't have too many questions unanswered after I'm gone. Recording something like Story Corps is really great too, so your loved ones can still hear you telling your stories in your voice.

[Adele_Julia in reply to dcb56]

Bless you for your detailed and comforting reply. I’m sorry for your loss … your words about your memories of your mom touched me profoundly and deeply. Thank you and heart hugs…. Your writing is elegant and meaningful. Xoxo

[dcb56 in reply to Adele_Julia]

Thank you! I hope it gives you some peace and reassurance. It's so important to stay as calm and centered as possible to fight our fight. I find that keeping a broad perspective is very helpful to me - easy to do with all the pain and suffering that countless people experience daily around the world. I'm acutely aware of the fact that my life has been easier than the vast majority of humans living on our beautiful, but very damaged blue planet (I'm a marine biologist). I'm very grateful for all that I have and that I am still able to enjoy simple daily pleasures. Actively practicing gratitude is immensely comforting to me. I highly recommend it. Also, I tap into my inner strength during darker days, and I know that you must have that resource to tap within you. You have successfully raised two children to adulthood, and that takes great strength. Kudos to you for that, and stay as strong as you can, while also giving yourself lots of grace. You deserve that. Xoxo

[SeattleMom in reply to dcb56]

What a beautiful reply, Adele. It was so thorough and comforting! It brought tears to my eyes. Thank you! Linda

[TwithBC in reply to Adele_Julia]

... my children; yes--nothing compared to the husband. No words. my children were 2 and 3 when I was diagnosed MBC--now 10 and 8 (I thank you GOD for this gift forgive me for wanting more and more...); they are entering the ages I could tell them mommy is dying...so I live with this daily; I don't want them to feel the loss of a mother. It breaks my heart; but then I must be strong and pray that EVEN THIS will be "used" -- OH GOD let it be-- for their "good" -- that they become more compassionate, more loving, stronger humans on this Earth because of the suffering of losing a mother. Let it be oh LORD that their loss would make them "better", more loving humans -- full of compassion and strength to love others more intimately, having tasted this pain. DO NOT let them instead become angry and use my death as an excuse in life to think "only if I didn't suffer this - why me" ; NO -- do not let this loss allow them to feel sorry for themselves but instead to look not inward, but outward to others and MOST OF ALL to look to YOU GOD for comfort and direction. May you lead my kids and provide a mother figure -- even now God I ask in all my sadness to ask that you would prepare a mother figure who would love them as her own--and be the mom they need.

[Aquamoron]

I think Avidbooklover’s idea of mentioning to your onc is a good one. They are familiar with the local resources available for caregivers and may have some suggestions.

It’s hard to think about a future where we are not in it. What we will miss and how our absence will impact our loved ones. There is no comforting way to navigate this, and it’s natural to want to make this easier for those we will leave behind. I too struggle with this, as my husband has little family support and not many friends. Our children are local, and are starting their adult lives. It’s very sobering to think how they will manage in the years ahead.

[KMBL_]

If your husband is open to it, there is a caregiver support group on breastcancer.org that meets on Zoom. They have husbands in the group whose wives have breast cancer. It’s for any caregiver, sons, daughters, etc. I can send you the info if you’re interested.

[Claireperth in reply to KMBL_]

I asked him but no he doesn’t want to know 🌸

[KMBL_ in reply to Claireperth]

I understand. If he ever changes his mind, please let me know. Hugs.

[Kiss_my_grits]

It’s so hard. I recently researched caretaker and grief support groups. I left the info in my “important papers.” Then my husband has the info on hand and hopefully uses it.

[Claireperth in reply to Kiss_my_grits]

good idea

[Beryl71]

Maybe try turning it on its head. Enjoy every moment together, after all anything can happen to anyone of your family, life has a habit of throwing all sorts at us. Who says you'll go first? But I'm sure he's thinking about it and preparing in his own way as we all do. Take care. X

[Claireperth in reply to Beryl71]

thanks for those wise words 🙏🎄

[Normalee1965]

never forget miracles still happen maybe that experimental drug you’ll be taking will be your miracle. I pray that it will be for you. I also am 37 years married stage 4 six year. Things are definitely starting to progress but the loving and helpful husband that I thought I had. I just found out this week has been having a 18 month run of watching porn a year long phone affair with a woman who they so kindly are planning the relationship after I die, and hiding all kinds of money to the tune of like 8000. be very very very grateful even though he doesn’t want to discuss anything that you’re not finding out anything bad. I pray that you live as long as you possibly can and carry-on with your wonderful marriage. My prayers are with you.

[Claireperth in reply to Normalee1965]

Please talk to a lawyer about a new will. Blessings to you 🌸

[Cowgirl1951 in reply to Normalee1965]

Normalee, My heart goes out to you. I am 72 and left a marriage in 2019 (year 6 of my metastasis . . .original diagnosis 2001 metastasis 2013). Emotionally I am so much better and happy. I don't have to worry about anyone but me. I have great friends and I try to keep busy. My passion is Shag dancing and I've made new friends there. Kisqali make me exhausted at the end of week 3 but I will eat and rest a lot. I make myself go to the dance. I dance one dance and sit two out because of SOB. I feel better after dancing and socializing. Most of all I don't live in a negative environment that eats at me.I hope you find you a good attorney and support group.

[Pachira]

We’re 39 years married. My husband will be 81 in January and I’m 73. I haven’t been doing so well either so when I thought my husband was relaxed. I brought up the situation where I might go first and would he be able to manage the house. He said he could and wouldn’t want to move. I suggested he needs to learn how I pay the bills so we’re doing that every Sunday. Thankfully when I was feeling a bit better, we hired an elder care attorney so we have a Will in place and beneficiary designations on Bank accounts and the house recorded with the County as Transfer of deed. We also went to the local funeral parlor and paid for cremation. I think most men of this generation are very stoic so I’m hopeful your husband will cope with whatever happens. My doctor told me this disease will probably kill you but that’s not a certainty. I hope you can continue to put your affairs in order and trust that your husband will have the strength to continue. Old age and cancer isn’t for sissies! Hugs Chris Xx

[Claireperth in reply to Pachira]

thanks for sharing 🙏

[PJBinMI]

I guess this is the biggest down side of having husbands/partners that we love! The idea of dying first is hard! There's the more technical side--funeral plans, wills, and then handling the household. And the emotional side is so fraught....many of us have husbands who handle strong emotions differently than we do. I think letting them know what we know about resources, like grief support groups, and letting our grown kids know about those, too. So they can tell their fathers about them, too. But in the end, I think I just have to get comfortable with the idea that he will grieve his own way, just as I will if he should die first.

[Claireperth in reply to PJBinMI]

yes you’re right😊🎄🌸

[PJBinMI in reply to Claireperth]

Are you in Perth, Australia? My mother and daughter each got to live in Australia and going there was on my pre-cancer "bucket list." My mother's father was a senior engineer with an American company that built roads and bridges all over the world. He got to bring his family with him in the 1930s while he was working on the Sydney Harbour Bridge. My mother was around 16 at the time and had many wonderful memories of living there. My daughter had a chance to student teach in Perth around 30-32 years ago. A group of senior year college students from the US went there and lived with volunteer families. She loved being there, too. When their teaching experience was done, they traveled some in Australia before heading home. I was so glad she got to do all that!

[Claireperth in reply to PJBinMI]

Yes, I live in what is often described as the most remote city in the world! Perth is best known in Australia as a great place to bring up children! Some say it’s boring but the beaches are world class and only 250kms away is our picturesque Margaret River vineyards. Last week I went down to this beautiful part of Western Australia and spent some time in a cabin on 6 acres of natural bush land with my husband and little dog. I am starting a new drug trial on 4 January which will be intensive and require many trips to the hospital for up to a year! Your mother would have experienced the extreme weather conditions of up to 45c during the summer and -1c in winter. As explained by the local Aborigines, Perth has 6 seasons a year so these extremes don’t last too long so we enjoy a wonderful climate most of the time! Thanks for your reply it’s nice to know Perth is known on the other side of the world! 😊🌸

[Timtam56]

Claire.

My dear partner died 3.5 years ago. He was diagnosed with Non Hodgkins lymphoma, a year later I was diagnosed with MBC. I nursed him to his death over the next 2 years. There were times we sat up in bed together and cried. But not very many of them. Not all the time. (They are now so precious to me in my memory)

I now realise that when he used to say to me, “you are so strong sweetie” that maybe I appeared/was too strong. Maybe he needed to hear how scared I was to lose him. But I didn’t want to worry him. Maybe I should have shown him more. I so hope he never felt unloved.

Sometimes my friends try to keep up a positive attitude towards me, now. So I have started telling them that even though I’m doing well at present, it is lovely for me to know that they will miss me. If they are too stoic, I sometimes feel I won’t be missed. So perhaps you could open up the conversation with him from your point of view. Do you want to know how he feels? Even if it feels very sad, fragile, scary? Or is he protecting you, by protecting the conversations?

I don’t know if I’ve said what I want to say to you, clearly! Or if it’s ajumbled as it feels to me. But feel free to ask me what I mean if I haven’t been clear.

I think life is too short not to talk about the real things. But that’s just me.

[Claireperth in reply to Timtam56]

🌸🌸🌸

[Rte66]

My husband is the same way. I know him well enough to know that I can't do anything about his attitudes. Just work around it without too much nagging.

[Claireperth in reply to Rte66]

good advice 😊

[hurricaneheather]

it makes the heart sad to read that "things are not going to well for you." i recall the mets dx and concern for my life partner; at that time we had been together twelve years. he was determined that i would be ok, and he would transition first. yet, we did not talk much about either of our transitions. we did speak of the challenges in the moment. something i've learned in life, and our relationship, is that each person has their way of living/experiencing life; accepting 'this' was challenging. further, if the person is receptive to suggestion, then the person will pursue. K unexpectedly transitioned in Nov 2021, after eighteen years together. and, i'm figuring out this life without his presence.

[TwithBC]

I have similar issue—very; think about it toms as time approaches. No advice here.

[Split]

Claire, how are you? I have not read posts on this site for a few months and was looking for any new posts from you. That trial you mentioned, are you still participating? ❤️🙏🍀