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Are you experienced with this scenario?
My husband is living with dying; I am living with living without him!
If my husband was dead, there are lots of grief groups! He is not only living, he's working at age 80+ and most of all, in no pain, feeling relatively healthy ~ successful surgery for superficial bladder cancer in October 2019; however, likely recurring high-grade pathology prognosis. We went through 5 months of exhausting ER hospitalizations, appointment fatigue ending mid-December, ultimately he chose Quality of Life/Palliative Care following surgery due to likely Chemotherapy side effects . I am experiencing grief with horrific nightmares. Family/friends are either deceased or live far away - lacking support. Welcoming coping ideas, thank you.

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Thanks for the update, Crystal. I think I would have had the same reaction to the support group meeting you went to. No direction, 90 minutes long, people's stories going on and on. OMG. No, thank you.

Besides the individual therapy sessions I believe you mentioned you are starting (which I hope can start addressing the nightmare issue asap!), I definitely think you should get out and make some interesting new friends through shared interests, church or other faith group, yoga, civic affairs, pilates, opera -- whatever. You sound awesome and obviously just need to connect to the right folks of whatever age or stage that are around in your locale. Caregiving is so isolating and we all need to make concerted, thoughtful efforts, I think, to make connections to others outside our caregiving bailiwick, if you will!

I hope you post again soon.
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Update 3 days later.
 
I appreciate everyone for their kindness, responding with compassion and recommendations.
 
I had no idea editing was cause for judging my post or another's response!
 
My son died suddenly at age 18, 35 years ago. I know a lot about grief when a loved one dies. No experience with long-term care giving.
 
I attended a Hospital Cancer Support Meeting today for 1 1/2 hours, because I'd like to make some acquaintances who have a clue what I'm experiencing, getting together for coffee with mutual compassion and skipping judging any behaviour and/or simply giggling about something silly.
 
I was the oldest in the support group at 80,
and the ONLY participant person with a loved one choosing PALLIATIVE CARE.
 
Generally, the people I listened to are beyond exhausted by short- or long-term (many for years!) of aggressive treatment care appointments, etc., sustaining life to some degree; I realized I'll be more likely to find a new acquaintance in a book club or sewing circle.
 
90 minutes was devoted to 10 attendees telling their personal stories.
I understand from another who attends the group meetings, introductory stories are the sum and substance of monthly meetings. No specific topic - no time. I will continue to research a group to make new acquaintances.
 
Cancer Action.org was suggested as a resource.

While my husband is living with dying, I am living with living without him - daunting at any age. My life expectancy is another 11 years according to the social security actuary chart. I am relatively healthy with no serious systemic challenges other than anticipatory grief resulting in depression. I am aware statistically my health will likely decline when my husband becomes moribund.
 
While intellectually acknowledging I need to celebrate the temporary, that remains an emotional challenge...

Grief doesn't start only when someone dies.
If you're loving someone with a terminal illness, you lose the person twice - upon diagnosis and again when he/she dies.`

Sincerely appreciate this opportunity to share. I am not unique in my anticipatory grief, although I think it is least understood and most misunderstood by many people.

This is my closing post. Namaste, Crystal
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Locally we have counseling through our Hospice organization. It is available prior to the death of your loved one. Also many churches and places of worship offer Pastoral care, have you checked with your Faith Community?

Have you asked the SW at the hospital where he was treated or through your local cancer agency about support?
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Hi Tothill, This forum is an interesting adjunct to our choosing Palliative Care for my husband's bladder cancer.
I appreciate your response - will look into your recommendations.
My arms are around you with a hug, Crystal
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Have you searched for any Gilda's Clubs in your area?  I didn't reach out to them until after my sister passed, but I wished I had found them sooner.   As it was, it was still too emotional and recent for me to feel comfortable becoming involved, but I was really impressed with the variety of activities and support extended to families dealing with cancer.

I also found comfort in activities provided by the Infusion Center where chemo and radiation treatments were held.    There were limited, but soothing activities.  My favorite was a colored pencil group;   we sat in a second floor room with excellent views and afternoon sun which warmed us as we created our "masterpieces".  I learned a lot about coloring techniques, made some new friends, and always left relaxed and enthused about the ability of art to soothe shattered nerves.

During the last 6 months of my sister's life, I moved in with her to care for her and her dogs, after she let it slip that she was having trouble letting the dogs out and had to crawl back and forth to the door.

We spent quiet times, reflecting on life, saying nothing, or watching light hearted programs and listening to calming mood music, such as a CD of waves gently lapping on a shore.   Those sounds soothed us both.  Music is a number one go-to when I feel stressed and need to be calmed.

One thing I learned was how anxiety can create a highly charged, emotional situation.   After some discouraging and literally terminal news from her oncologist, I felt that my sister might want to be alone, and spent the night back at my home.   

That was when I learned how much anxiety and pre-stress anticipation can affect someone and alter the sense.   I heard noises, repeatedly, and thought someone was breaking in.    So I barricaded the doors, got out and loaded one of the semi-autos, put obstacles throughout the house so that if someone did break it the noise would be so great as so wake me and cause the burglar to probably break a limb battling the barriers.

All for nought; I was too upset to sleep and eventually called the police, who found no signs of potential burglars.  

After I calmed down the next day, I realized that the night sounds which seemed so loud and intense were the branches of the lilac brushing against the house.   The magnification and intensity must have been nerve based.  I've never been so tense and anxious in my life; it's something I watched for in later years when my father was facing the end of his life.

I say this b/c if something like this occurs and you find your anxiety soaring, perhaps the best thing you can do is seek calming activities...soothing music, exercise, refocusing, reading gardening magazines, sewing, crocheting, knitting, etc.   That's one reason why I got in the habit of bringing gardening magazines with me wherever I went.  I still do, to this day.

To make light of the horrific nightmares you're experiencing would be inconsiderate.  I raised that issue only to offer insight into the fact that you wouldn't be alone, and that sometimes it's really hard to pull back from the highest levels of anxiety.

I do hope that some of my long response offers you some peace and respite.
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SnoopyLove Jan 2020
GardenArtist, thanks for that very powerful example about the power of anxiety. Sobering and helpful words.
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Crystal, my mother lived well for 10 years before her breast cancer returned. My BIL lived for 15 years with an active cancer and continuing treatment. You cannot tell how long your situation will last. This is a time for you both to live in the moment and enjoy what you have. Leave the grief for now.
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Thank you for listening, LeeLonnie1,
and responding to my post.

Yes, you are correct!
My husband, the love of my life, is 81 and working full-time; feeling asymptomatic regarding his diagnosis - feeling relatively healthy and definitely profiles "outside the box" from a routine profile for his age and health. Amazing genes ~ inherited from his Mother who lived to be 95 in the face of many diagnoses at her age. I admire my husband! He copes with an abundance of denial, which works for him.

I understand you are caring and want to help.
I am grateful for sharing your Denver Palliative Care guidance.

After a month of steadfast persistence, today I was contacted by UCH about a cancer support group meeting monthly at the Highlands Ranch Hospital; I will attend tomorrow, pass out my business cards, and perhaps connect with others living with potential loss. It is not Palliative Care per se, yet close enough.

I spoke with a Professional Counselor today who gently explained I am living with potential loss, immersed in an unpredictable care management timeline where no matter what I do, the outcome is loss...following 6 months of one unknown outcome after another.

I need rest, nutrition, and time - a lot of time - will benefit from personal support - especially considering my age, personal experience, and historical references for traumatic loss over 80 years.

I was taken aback by your indirect questions...
Why am I "Borrowing trouble? Creating anxiety?"
In a nutshell, I am experiencing Anticipatory Anxiety,
over which I have no control.

There are 2 kinds of intelligence. Intellectually, I'm quite bright; Emotionally I'm bankrupt!

I don't know your life history or current circumstances.
Kindly understand my perspective at this moment in my life...

I wonder if you realize your response bypassed compassion and went directly to a "fix it/sunny-side-up" mode...?

I believe you mean well attempting to cheer me up by objectively observing my life with my husband focused on a positive outlook.

I recognize this approach; I learned it as a child.
I also discovered another way to approach people who are suffering.
I took a "Stephen Ministry" course, becoming a Stephen Minister decades ago, the purpose of which is to assist clergy 1-on-1 with parishioners by listening to their challenging, sometimes overwhelming, life-transition stories with validation, reassurance, and understanding -
Without
offering any ways to "fix" their life, surely without any comparisons.

Understandingly saying,
"Sometimes things are as bad as they seem, and this sounds like one of those times." is helpful because those words validate a person's reality.
Frequently people, upon being listened to, will find their own way by whatever path to fixes for their challenges.

Before thinking "No good deed goes unpunished."
do feel loved and appreciated by me.

Obviously, this subject is a "pet rock" of mine.
Take what you want, and leave the rest...

We are all doing what we think is right a the time - or we'd be doing something else.

LeeLonnie1, I appreciate you for taking the time and energy to respond with ideas for coping; my life is enhanced by your shared knowledge. My arms are around you with a hug, Crystal
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lealonnie1 Jan 2020
Dear Crystal, by no means was I trying to hurt your feelings, be 'non-compassionate' or put a sunny-side up mode to your situation, so I apologize for 'coming off' in a way you weren't happy with.

It seems to me you changed your post entirely..........I don't remember you saying you were experiencing 'horrific nightmares' or anything else you wrote. The original post I was responding to was entirely different, saying that you were experiencing 'anticipatory anxiety' and things of that nature, but that your DH is still working full time & doing fine.

In any event, my ex husband was diagnosed with stage 4 colon cancer (which had metastasized) about 3 years ago and not expected to live one year. Today, all of his PET scans show that he is 100% cancer free. His oncologist is now telling him that his prognosis is excellent. This is my experience with the cancer death sentence that someone close to me was given, and a reason for saying why borrow trouble? Things can change.
I pray that your husband has MANY more years of life ahead of him and that you can find a way to cope and that those horrible nightmares subside. I suffered such nightmares for 25 years and it's no joke.
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My daddy had bladder cancer. He went into remission after treatment. He died after his stroke that followed heart surgery. He did not die from cancer.

I think anyone who has dealt with cancer always has a fear of it returning. It’s a natural fear. I understand your concerns. Answers? Gosh, wish I had some. It’s tough.

Best wishes to you and your husband. Hugs!
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Hi NeedHelpWithMom, Kind Person, Thank you for your heartfelt words. You are right, you do understand my concerns. The loss of your daddy (I, too,lost mine) - and taking care of your Mom without him to support you both in love, that's likely exhausting. I understand exhaustion too. I spoke with a professional counselor today. What I believe may be most challenging for both of us is, no matter what we do to manage care for our loved ones, we are living with unpredictable timing, yet known outcome of loss... May moments of peace, love, and tranquility shine upon you, Kind Person. I appreciate your kind, thoughtful, and considerate words of compassion for me. My arms are around you with a hug, Crystal
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Hi, Crystal. I haven't had any experiences relevant to your situation and suggestions are not coming to mind at this moment, but I just wanted to say how sorry I am to hear of your husband's illness. It must be terrible to have this hanging over you. And after all the treatments he endured, and all the caregiving you lovingly provided, to end up in this kind of unresolved limbo state... I can only imagine how tough it is.

Thinking of you and wishing you some peace, moments of lightness or fun with your beloved husband, and nightmare-free rest!
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Hi SnoopyLove, Thank you for your kind, thoughtful, considerate - and most of all, compassionate, non-judgemental response, SnoopyLove. I spoke with a professional counselor today who explained I am living with an unpredictable outcome, "unresolved limbo state" as your wrote. May you experience peace, love, and tranquility in your life. My arms are around you with a hug of appreciation, Crystal
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Your husband is getting palliative care, yet working full time, is that what you are saying? Since he's doing fine now and asymptomatic, why borrow trouble by worrying or creating anxiety? Like you said, he is coping well and may wind up living years. Enjoy your time together now and make the most of every day. Maybe even plan a nice romantic getaway for the two of you which would be relaxing and fun.

I live in the Denver area too, and found lots of info on Palliative care support here:

https://www.google.com/search?q=palliative+care+support+groups+in+denver&rlz=1C1JRYI_enUS478US487&oq=palliative+care+support+groups+in+denver&aqs=chrome..69i57j33l2.8023j0j8&sourceid=chrome&ie=UTF-8

Call Compassus at (720) 586-4143 to see if they can give you information on support groups in the area, or at least point you in the right direction. They are a pretty large PC/hospice company with lots of offices in lots of cities.

You can always come here for support as well as there are many people in your shoes.

Wishing you the best of luck, my friend.
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Compassus Hospice is a wonderful organization. I spoke to them at one point when researching care for my mom.
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