A place to talk death and dying issues
Comments
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Hugs to everyone here. Calico how did your Mom's Rosary go? Amazing that you have been a part of that church for that long a time. I hope your neuro appointment goes well and you get some answers. Will you be doing anything about the brain mets or let that ride?
Hi Blondie I was also impressed by how well your tablet could type your voice. I hope your breathing is better and you have no pain.
Hi to Brendatru- hope things are going better as you had hinted things were rough. Hope things are improving and doable.
Dunesleeper- PBS had special on captive birds parrots and cockateils etc.. My DH watched and I saw some. Some of these birds get so lonely and miss their owners and buddies when separated. The rehab stories were amazing, heart warming. So there are some very neat rescue places. If it plays again check it out. You would love it. I have only ever had canaries not parrots.
I Love all the spring flowers. I wish you all good days. Be well.
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Especially- Peggy- all of you suffering. It took me three years working for a hospice to really start to not fear death.Making it a little easier for those that will be left grieving , is my top priority now. The good Lord will do the rest. Don't leave things undone- things unsaid. Make a will- have a plan for the end, don't leave it all up to family if you can. Write down your wishes to the finest detail, it will lesson tbe load on family. God will welcome you in to his arms when he is ready, until then do what you can to make it through each day, week, month and year. Appreciate every single day as it comes. Hugs and PEACE to all.
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Hi, Rosevalley, thanks for asking. I didn't go to the services for many reasons, but reports are the Rosary and funeral Mass were wonderful. Nobody showed up drunk (believe me, in my family, this is cause for rejoicing!). The program for the Mass had poetry from both my mom and her dad, a beautiful touch, I thought. She'll be interred in Cave Hill in Louisville, Ky. where there are family plots. The tribe will gather there in a year to do that. Everybody seems happy with how things went, so I guess that qualifies as a successful funeral!
All this got my husband and me to talk about what to do about moi. Personally, I want as little as possible, but I've always said that I feel the surviving spouse (in this case) should do what they want. It's their grief and their feelings that need to be attended to. He's asked me to write my obituary which I'm (happy? glad?) to do. I've already had my marker set in the family plot. It's just waiting for my passing date, and I would like that to be entered on the marker.
All this brings it a little too close to home. Although I deal with things in a realistic way, sort of like a project, my self-protective denial mode gets replaced by a heavy fear that takes a seat squarely in the middle of my chest. When that happens, it's not too far into grief, depression, hopelessness.
Soooooooooo . . . . . . A friend and I are going to see "Hot Pursuit" today. It looks non-violent and silly and exactly like what I need!
xoxoxoxoxoxox
Calico
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Thanks some pain but think we got it under r control
U guys r the best.
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Calico & Blondie & Penny (((((HUGS))))) I send you daily prayers and as much healing energy as I can muster. I am glad for the diversion of movies and friends. Pain meds are good too. May they work for you Blondie - and if not may you speak up and get them to find something that does. Lots of love sisters. Feels funny writing that since I grew up with nothing but brothers. Be as well as possible.
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Rosevalley thanks for your supportive remarks. because we are always supposed to think fluffy thoughts about our mothers, it is nice to hear support from those who have seen the flip side. Only a very very few elderly retain a true personality to their earlier years. It is just a sneaky, progressive thing- moms becoming childlike. thanks to all for the comments on this difficult site. Carolyn from Music City
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Thinking of you all.... I've been trying to balance tasks with getting rest, and rest almost always trumps, so I'm not making the progress I'd like to make. Guess I need to give myself credit for just doing the best I can.
Blondie, I'm glad you found a way to dictate some messages in order to save your eyes! (I've turned to dictating emails on my iPhone, but I have an awful time with writing messages and posts to BCO from my iPhone, so I have to wait until I get on my laptop.) I hope that you have found some relief with your eyes and that you can read others' messages, too. I was glad to hear that your pain is under control. Is the hospice team supporting you in all the other ways that you need?
Rosevalley. Yes, I also am grateful for the beauty of spring flowers. And birds, as well as starry nights, soft sunrises, light breezes, low humidity. My mother and grandmother often told me not to wish my life away, but lately I've been wishing I still lived in the Blue Ridge Mountains, where the summers are so nice. Glad for you that you have good pain meds and pleasant distractions!
Calico, hope you get useful input from the neurologist and can find some relief soon. A successful funeral for your mom! I'm relieved for your family it was so. I can relate to your comments about working on death/dying issues as if they comprise a project of some sort. I've been tossing around ideas for many issues for quite some time and making progress by clarifying a few, and I've had to work through some emotional concerns before feeling ready to tackle those end of life issues again. The basics are done--cremation, no funeral or memorial service unless various family members want to get together, ideas for donations in my memory, husband's choice on disposal of cremains (although I've given him ideas, like the spiritree --http://www.thespiritree.com/ in case anyone is interested). I've been working on my obituary off and on, and I need to get that completed. All my decisions have been made with input from my husband, and some of them won't be popular with my family, but he and I agree on all areas, which is a relief.
GrammyR, I'm glad you find comfort in your beliefs, as I do mine. We each have to find our own path to meaningfulness and peace, I presume.
Car2tenn, mscal02, NYCchutzpah, I appreciated your comments on dealing with mothers and mothers-in-law. It's a struggle to deal with various changes, but the repetitiveness doesn't bug me that much. Or even having to explain over and over about my heart failure status. It's the personality changes that are so hard for me, those and the illogical thinking process used by one who is still "competent enough" to deal with many of her daily affairs. I guess I am learning in one more way how to let go of things I cannot control, but on the other hand, I know that "hope is not a plan" (in the words of the author of Being Mortal, Dr. Atul Gawande), and I want to have as good a plan as is possible. I don't know how much my heart can stand!
By the way, I read about a resource that might be helpful to many: "Checklist for My Family: A Guide to my History, Financial Plans, and Final Wishes"--see http://www.aarp.org/about-aarp/press-center/info-04-2015/aba-aarp-financial-planning-book.html The American Bar Association and AARP partnered to develop it, and it looks promising. According to that site, Sally B. Hurme's next book, ABA/AARP Checklist for Family Caregivers, is scheduled to be released this month in conjunction with a PBS television special, “Caring for Mom and Dad.” I think the special is scheduled to run again on Father's Day, and it also can be viewed online at http://video.pbs.org/program/caring-mom-dad/
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Thanks brenda n so far so good
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How are you feeling these days blondie? Are you at home or at a care center?
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I am at home I'm OK and went on hospice last week nurse comes twice a week thereis a social worker an ex priest is coming in and doing counseling I haven't met him yet and I'm trying to get services in the county and they help me fill out some.
Thanks for askin.
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FYI. I receive RX for lidocaine ointment..I use on port the day they draw labs and when I have faslodex shots..works great!
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Hi ya Blondie- who is going with you to Florida? Where in Florida? You know if I had had more time when I was there in Jan I would have met up with Sassy and Spookiesmom. So I hope you go and have lunch with them! You should definitely do it, surf and sun and heat. It sounds like hospice is treating you well and services have been good. Yay!!
Gotta go my right rear tire on the van is flat and triple AAA is here. They can switch out the spare. I need new brakes soon too. bummer. Funny I thought something was wrong with the tire yesterday when I drove to get a script at drugs store. I got out and looked... seemed fine. I didn't go anywhere to day and it's flat. well I know where I will be tomorrow.
Roberta we used the lidocream on areas for shots for my DD. I agree much better!
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Cape coral in fla., down near ft myers, hope the dr will agree 2 2 weeks, mayb that is why i feel so good n george my son who is my caretaker. Cross ur fingers he lets me go.
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Blondie I so hope you and DS get to go!! Praying for that flight and 2 weeks of sun and sand and the sound of the waves. May your MO give you a boarding pass! Enjoy!
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Blondie - that sounds great! I wish you a beautiful trip - keeping my fingers crossed for you.Hugs from Quebec to you. Linda
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Blondie, when are you going? I would like to send you something for your trip, if there is time. I already still have your adress from Christmas time, and if I can't find it, I know SlowDeepBreath has it!
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find time but that's not necessary if I go sometimes it'll be in July I have to talk to the doctor on Friday and like I said you decide which question thats made out of Cape Coral I'm really really hoping he lets me go I need to get away from these crazy people here and make me crazy and I already am but thank you , i adore all of u
How is evrryone
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Blondie, It's good to hear from you as always. I'm so hopeful that your medical team will give you the go-ahead as well as all the support and planning you need to make the trip to Florida a safe and pleasant one. One of the many advantages of hospice is that the team can contract with a hospice provider in Florida to provide care for you while you are away from home, which is especially useful in case you have an unexpected problem. No one wants to go to an ER far from home in any situation! I'll be thinking of you.
Calico, thinking of you as well. What's the latest on your neuro appointment and overall care planning? I hope you are receiving useful input from your MDs and becoming clearer about your range of options.
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Here's an interesting story from NPR, "Coded Talk about Assisted Suicide Can Leave Families Confused." It includes the following: Stanford medical ethicist David Magnus and others say "this kind of situation is a symptom of a much bigger problem: Doctors are just plain bad at communicating about death. "Across the board with end-of-life care clinical interactions, they're full of misunderstandings," he says.
Avoidance of difficult conversations about end of life, speaking in vague terms and euphemisms, allowing one's one value judgments to take priority over a client's values...the list goes on. Is it any wonder that Americans are confused about their status and options at end of life? How refreshing when providers talk openly, we get the information that we need, and we feel more freedom to make choices that reflect our values.
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Blondie I'm glad you are getting the help you need.
My trip is coming up in 2 days. I still haven't packed. It''s been a rough week. I seriously have to get tougher. I have the doctor in the morning. Maybe she has some data that can explain why I feel so ick and how we can make it better. I lost a good bit of hair today so I'm wearing a sleep cap to catch the stuff that falls out at night. It looks ridiculous. LOL
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Dunesleeper, thanks for giving me a laugh on a day when I really, really need one! Those sleep caps are just darling, aren't they? I hope your MD will help with figuring out why you feel so icky and how to help you feel much less icky. Good luck with the trip! Perhaps there is someone who can help you to pack. I bet you already are tough and you just need a helping hand. Be kind to yourself....
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Dunes u look adorable.thanks 4 the encouragement. hi everyone. Eyes, blurriness is improving, yaya, haPPY MEMORIAL DAY WEEKEND
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Pretty funny photo! I hope you feel better. Enjoy this weekend. I hope those poor folks in the south don't drown.. that's a lot of rain. May you get your pass to visit Florida Blondie.
Hey Calico.. are you ok? You haven't posted and we worry unless you are just happily engaged. Hope those tests and the neuro visit went well. Brenda I don't think most docs are comfy with talking about death. Althought the onc I spoke with about DWD was clearly just fine with it.
Be well. Peace.
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I haven't been on this thread for a long while...and am trying to catch my breath, reading the posts. When I stopped reading, there was so much info that I couldn't deal with it. After another sister mentioned that there were others nearing hospice, I see I've missed important updates and I'm sad & sorry. Please know that you are in my heart and prayers.
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Mscal...you had your party!!! So glad it was perfect :-). Hope you danced into the room with Pharrell singing!!!
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Hey, Rosevalley and all my sisters here, so good to be "present" in my mental space and able to write.
Like the onc, the neurologist agrees that the whackiness in my neck and spots in brain don't account for what's happening with my left arm/hand. He's suspicious of my left brachial plexus (complex bundle of nerves and other stuff in shoulder) and I got an MRI of that today. He'll see me again on June 3rd and give me an EMG which is a nerve conduction test. I had one years before, and it really hurt.
There's also idiopathic brachial neuritis where the brachial plexus gets inflamed for some unknown reason (uh, chemo, maybe?), and it just resolves over time. A friend had a similar situation, and took B-12 and it resolved, so I got some of that today. The neuro was not opposed to it.
Aside from all that fun, I am running away tomorrow to a meditation retreat for 3 days. It's at a Catholic retreat house that rents itself out to my bunch of spiritual, but not religious, friends. i understand it is pure bliss. Yay!!! Will be sure and give you a full report!
Hey, Blondie, any news yet on your Florida vacation? Seeing that happening for you!
Dunesleeper, loved the picture!!!
xoxoxoxoxox!!!!
Calico
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Has anyone been to Hawaii? This was one place on my bucket list that I gave up due to distance & cost. However, after recently been given the "talk," decided once more to look at options - like breaking the trip up - flying to CA, staying over & then to Hawaii. Been dragging my feet on this since Xmas due to all the negative chemo reactions, etc., but my 2 daughters have the last week of August off, so I'm once again looking at it. I understand that's hurricane or tornado season, so would purchase insurance for that as well as medical. I've not traveled much in my life, so I have absolutely no clue where in Hawaii or where to stay. I have an appt. with AAA next week, but they want you to come prepared as to where you want to go. I've hear good stuff about Maui and possibly Waialua (N shore of Oahu). I hear Maui can be wet, but not all parts. Just want everything easy access, relaxing, beautiful & simple. Would like to be on the ocean with pool at hotel.
Any input, anyone? Thanks ...
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Check out Rainbow Towers in Honolulu. I think a Hilton. You don't need a car everything is contained. Lots of places to eat and walking distance from attractions. Nice rooms. Right on the beach and pool. I stayed there for a week and loved it. I would go there again. Google rainbow towers. In Honolulu.
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Hi, SyrMom! I've been 3 times. Twice to Oahu (in Honolulu, where Wakiki is) and once to Hawaii (The Big Island with the volcano national park). If I were going back, I'd hit Oahu again. Many direct flights there, so less hassle. The hotels are gorgeous, the beach is gorgeous, tons of things to do and see and places to eat. Go for the best hotel/accommodations you can afford. AAA will have lots of options.
I've found TripAdvisor to be a great source of info:
Also, the best books I've found on planning trips are Frommer's.
I think you're very wise to break the trip up into 2 parts. I find long-distance travel so much more comfortable that way.
Anyway, I hope this gives you something FUN to think about for a change!
xoxoxoxoxoxoo
Calico
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I've never been to Hawaii, but I use TripAdvisor a lot, am also a contributor of reviews there, to help me figure out travel plans. Frommers has great travel books (I often get them from the library) and I also like to go on the Frommers website forum as well. There are many well traveled people on Frommers who have steered me in the right direction when I ask travel questions.
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