My Sister and The New World of Cancer....Advice Needed

Thank you, my friend, @Terry4. I am grateful that you are there…“In the moment” is always best, of course. I just need to get a few ducks in a row that might quack at me while I let go for that moment----like scared family members who have control issues, clothing layers for hot flashes, snacks for impending fibrofogs, taxi fares since I can’t drive anymore…

I swear my mother’s pragmatism continues to haunt me…Sigh…Your presence in this thread means a lot to me… Wishing you lots of great love for the holiday season…

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nearing the end (but while she was still mobile and could drive), my mom loved Chinese hot and sour soup. It’s not a healthy soup as it is filled with corn starch and msg, but it is what she loved to eat (the restaurant workers were so kind to her, which is the norm in chinese culture when interacting with the elderly). it also has a lot of vinegar, which is an ingredient i craved when i had morning sickness while pregnant.

i don’t know how much strength your sister has, but when my mom was in between chemo treatments, she flew from NJ to California with my big sister to visit the California redwoods. it was something she had always wanted to do (hug a redwood for comfort and strength). so even though her toes were getting black from some side effect of chemo, she still went and enjoyed herself. i was too afraid to take her because she was so medically fragile, but that was a mistake on my part, i think. so i am grateful to my sister for having the guts to take her. so your sister might have something she wants to do that might freak you out because she is weak, but i say try to honor it if it comes up. my mom dealt with impending death well. she saw death as a child as a war refugee and as an adult working as a nurse. she couldn’t lie to herself or go into denial. so i had a great example of what to do- face death head on.

my mom used morphine and xanax for quite a while. she was sparing in her use of morphine because she didn’t want to build up tolerance, but she used it when she needed it for pain with no personality changes (as i have written before). she needed to still be involved in future-thinking and projects, so she still ordered lots of flowers and plants for our garden and planned her california trip.

when your sister is in hospice and you want to make her as comfortable as possible, watch out for constipation- my mom had an awful experience with this. also, a catheter early on is better than always trying to fill someone from side to side to change their bedding. lastly, we stopped giving food and water when my mom stopped opening her mouth for it- we didn’t hook up an iv. at night, make sure your sister’s sleeping area has no light coming in- no night lights or light from under the doors. use black out curtains. you have had migraines, so you know what kind of environment is needed to minimize pain- quiet, cool temperature, and low light. if she uses a hearing aid or glasses, put these on in the daytime if possible because she still might be taking in sensory information even if she seems to be unresponsive.

i hope you don’t have to deal with these issues for a long time. i don’t know what your sister’s prognosis is. my mom lived with metastatic breast cancer for years. all during that time i was with her daily and went with her on walks, to the movies, shopping, we watched science shows together. i soaked up as much of her wisdom as i could. we will be meeting me again when my time comes- my brain will register that as reality whether it really is or not.

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Good morning, Judith. We have already discussed the issues in your post, so now I want to wish you, your husband, Paula, your whole family including the kitties: Happy Thanksgiving! We’ll be with family for the traditional foods. With such unpredictable weather these days, I’m happy to say we’ll have a warm Thanksgiving (58 F), so maybe we’ll all get to walk off our dinner. Our Goldens will like that!

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Tomorrow, I board Amtrak’s Empire Builder to Minneapolis to finally hug my sister and see what’s going on. This will help me analyze better just where we are at. It sounds like her physical therapists are excellent (that, at least is something I know a bit about!). They got her and family ready so she could get to my niece’s for a few hours on Thanksgiving…

I think I will be able to help her partner in getting their apartment ready for her to go home–the PT dept has given them a checklist and that is another thing I know about from my various surgeries…She will have her first couple chemo sessions while I am there and I am glad to be able to see exactly what that set up will be…

I get to be there, too, for my niece’s annual family tree-decorating—with my 3 and 7 year old great niece and nephew—and we’re hoping that will be Paula’s next big outing----holiday festivities with a couple little ones—it’s been years and I look forward to it greatly…

I can’t tell you how much all your contributions to this thread mean to me. I’ve even printed out a lot of the info and advice to take with me in case I can’t get online—I am “riding the rails” into the first big snowstorm of the season in the Midwest! But I have a cozy little room and a car attendant who will take good care of me----also lots of TuD postcards—Fourteen round trips on Amtrak and I Always have great interactions with diabetics—we really are everywhere!..

Here’s a fun winter picture of Paula and her grandson, Sebastian. She hadn’t skated in decades, but, by gum, Sebat wanted to skate so off they went. She is an amazing woman…

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12/13 Update…I’m here with her for a week now. She is now into learning to walk again with a walker, putting a limited amount of weight on the leg with the rebuilt femur. Scary, but she is brave and determined…

I’m trying to take charge of getting her home set up with special medical equipment so she can get out of the rehab place. But there have been too many cooks stirring this pot and nobody is communicating with anybody else successfully, so supposedly I’ve got 2 days to pull it all together. And nobody even knows yet what her insurance will cover…

I have experienced some insurance difficulties post-surgery several times, but nothing like this. She seems to be one of us gazillions who falls between many cosmic cracks…

Anyway…It is very late here in Minnesota and I have to be ready for pick-up by my niece at 6:45AM for our very first Chemo appointment tomorrow. We are all a bit nervous. I find I am reluctant to go to bed, just because the 'morrow will come sooner…Sigh…Here’s a shot of her from earlier today when we secured her release for a few hours to trim the tree and have yummy Swedish meatballs with her daughter and grandchildren. It was sweet. Do note that she stands straight and strong—our big achievement this week!..

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12/14. Bedtime again…In the course of completing the process of securing her home equipment and care, I sat with the social worker to go over the list one more time. All okay. Whew…

And then I pushed ahead. I had noticed Allina employees around and they had provided my Mom with amazing hospice care in 2010. “Does Paula’s insurance work with Allina? Will she qualify for their wonderful hospice teams?”…“Yes. In fact, I was just looking over her current charts with (Nurse Manager) and the way her body is failing, she could qualify now, but we realize no one is there yet.”…

Ripples through time. I seem to be learning to be an end-of-life-caregiver. One just never knows how the Tapestry of one’s life is going to re-weave itself. I wish I could let go to sob into my pillow. Or smash something. Not yet. I can do that xmas week when I am home with my sweetie for a few weeks before coming back here…Blessings…

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it is a shock to the system, and more so the more you love the person. you have been through it, so your sister is lucky. she will have a chance for a smooth passing, which is the best i hope for myself and my loved ones. as my mom wrote in her living will, death is part of life. my thoughts are with you.

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Judith, try to enjoy the Xmas week at home. You need to keep up your own strength and have some time to enjoy yourself with your husband and kitties. Merry Christmas to you all.

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Judith, my thoughts are with you. IMO, the most important thing in life (besides children) is to have at least one loved one present when one dies. I was blessed to share this moment with my beloved father (who I still greatly miss!) and I wish to tell you that it was an immensely profound experience. For the first time I truly understood the meaning of the Circle of Life. After this experience, while I hope to be around for many years to come, I am no longer afraid to die. You and your sister are blessed to have each other. My thoughts will especially be with you both upon your return to your sister’s side, and I wish you both the best. :heart:

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Thank you, @rgcainmd, for the lovely response. I was my mother’s primary caregiver for her last 3 months and at her side as she slipped away peacefully in her own home. You are so right–it is a profound experience. While we may have as much as a year more with Paula, we don’t know yet. Chemo has just started…But yesterday we got her moved home and tucked into her little nest. She was as giddy as a schoolgirl—she had been in hospitals or care facilities since October 23!..I head to the train this afternoon and home by Monday. Coming back in March…Blessings of the season to you…

12/31/15…One last note for the year. She is using walker and crutches now, though my niece said they take the wheel chair along for major outings, just in case. As I said, we got her home to her little nest safely the day I left on Amtrak and when I called her a few days after I got home, she sounded stronger.

She was able to spend Christmas Eve and Day with her kids. With her particular mix of chemo drugs, the nausea has been minimal, but the fatigue has been immense. She definitely appreciated the soups I made for her, but absolutely Craved mashed potatoes, so we got her some good deli ones ready to heat up her first night until the real thing could happen.

I was immensely comforted by reading this thread while I was in Minnesota—to be reminded that I have such supportive and knowledgeable friends here. Thank you everyone. I will be heading there again in late February or sometime in March–after chemo is done and to be there for re-assessment and “what next?”

Here she is Christmas Eve with her daughter and family…Blessings, many blessings to you all in the coming year…

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Beautiful family!
God bless!!

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Lovely photo, Judith. Glad your sister was able to enjoy a very special Christmas with her family and that you will be going back to visit again in the new year.

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i love how the little girl in the picture ( a granddaughter?) is looking over at your sister. she is learning an important lesson.

happy new year!

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Simply beautiful - thanks for sharing!

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We lost her fast…have saved what I wrote and will re-post, but the photos aren’t loading…Deleted and will start over…tomorrow…Sigh…Me and computers. But I am at a hotel in MN…Want to share some beautiful photos of her…they just wouldn’t load. Very frustrating. Let me try just one–with a thank you to this wonderful online home…
Uploading…

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i am so sorry judith. sending you and your family love. xxx

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Oh Judith, I am so sorry for your loss. Please try again - the loading pictures thing sometimes goes wacko, it’s not you. Well, there is a size limit, so if you’re downloading pictures from your phone, choose the medium size.

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Judith, I am so sorry for your loss, but glad that your dear sister is at peace.

Remember, I am right down the road (I-5) from you; please don’t hesitate to contact me for anything at all, day or night…

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Thinking of you Judith. I’m so sorry. Love to you.

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