A place to talk death and dying issues
Comments
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Muddling, I think including your academic master’s robe and hood is really a thoughtful personal touch. It is a way to express who you are and I see nothing tacky about it at all. I actually love the idea.
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Muddling, it’s a large part of who you are. Since you picked it out last year and haven’t changed your mind then I say it’s perfect.
I’m really sorry you entered hospice but it’s good to hear they are treating you so well.
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Muddling, it is clear it means a lot to you to wear the robe. You worked very hard to achieve that accomplishment. You do you!
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Thanks, all.
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Muddling: yes! Wear the robes. What is tacky about that? It has grace. It has dignity. Wishing you peace and comfort.
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Muddling, I agree with others here. You should wear your Master’s robe and hood. I know how much work it takes to earn the right to wear them. I think your friends and loved ones would be happy With your choice. My Dh’s aunt died of kidney cancer about 10 years ago. My nephew, who was about 15 at the time, saw her in her casket and shook his head. He said that she hated the wig she was wearing and never liked putting on fancy clothes. He said that she should have been laid to rest with a bald head and wearing a sweatsuit and sneakers. Everyone around him smiled at his words. You know, he was right. It is just what she would have wanted because it was who she was. No one who knew her and loved her would have questioned that decision. The same will be true for you. Your choice will please all those who matter because they know who you are.
Hugs and prayers from, Lynne
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I just had a big dose of serendipity. DH and I just got home from a ten day road trip visiting DS and his wife in CA and spending some time at the beach. We had a really good time but decided to drive about 15 hours the last day to get home. I didn't drink enough or pee enough so now I have a UTI. Not too bad yet since I recognized it right away. I went to my PCP this morning to take a sample for culture, etc. and met the most amazing nurse practitioner. She will be my new PCPerson from now on, I hope. We didn't talk about that. We talked about everything else. (45 minutes) When she had learned my story (MS, stage IV BC), she told me about a new palliative care group that sees patients right there at my PCP's office. I have a appointment next Tues. They see you for AT LEAST AN HOUR at the first visit. There is an MD (haven't looked her up yet), a pharmacy doctor, and my wonderful NP, maybe a chaplain, and maybe another person. I forget. Holy cow. Just what I have been looking for for years. Just because I got a stupid UTI.
We talked a lot about books including my newest discovery called "The First Cell" by Raza. To me, this is the true story of cancer treatment, research and the lack of any curative strategies. It is a MUST READ for people who know and appreciate me here. My favorite quote so far is "treating cancer as one disease is like treating Africa as one country."
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Jaycee, I'm so glad you found a team who can support you and give you the help you need. I hope it turns out really well for you and your UTI clears up very soon. I looked up the book you recommended and it looks very helpful. Here's a link to it on Amazon https://www.amazon.com/First-Cell-Human-Pursuing-Cancer/dp/1541699521/ref=sr_1_2?crid=3FR737H7H8BQ&keywords=the+first+cell+by+azra+raza&qid=1571852214&sprefix=first+cell%2Caps%2C816&sr=8-2
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jaycee, hi there friend! Hope you had a good trip to see your ds.
It's so good to hear your news about the new np and also the palliative program available to you. Medical professionals who care and take their time are truly priceless. And it sounds like they get it. Like they honor the importance of this part. Your post gives me comfort thinking that a hospice or palliative program like that will be available to me when I need it. I will check out th
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Divine, wonderful to see you. The NP did stress the difference between hospice and palliative care. She said the vast majority of people get to them way too late. Hard conversations that should happen sooner don't. I looked up the MD. She sounds great, too.
And Muddling, I'm with you, too, on the robe and hood. And if anyone disapproves, you won't be there to see it anyway. But if you figure out how to say, "screw you" from the afterlife, let me know.
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Jaycee- I am glad that your trip was such a success. And the UTI had a silver lining. back in 2012 I spoke to the lone palliative care provider ( a social worker) briefly- anyway now the department is greatly expanded with MDs, NPs, nurses and social workers. I haven’t been back- but, happy they are there should I need them.
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Thanks everyone!
Jaycee, if I figure out how to say "screw you" from beyond, I won't say it TO you but whisper that it can be done 😄
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Read a big chunk of the Raza book yesterday. She includes many literary quotes like the Emily Dickinson poem Because I could not stop for death. One of my favorites.
The card the NP gave me has her email address. My first. I just called to make sure I could use it.
I was never told about this group by my MO or any other medial provider. They've been in existence since April 2018.
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Hello MuddlingThrough,
I think the master's robe is perfect. In a way, you've already said "screw you" to the naysayers.
Is the "no more" quote from Doctor Who? I'm a big WH fan.
I hope your days are lovely and your nights are peaceful.
Madelyn
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Jaycee, I'm so glad you found the palliative care group. Yes, one doesn't have to be on hospice to use palliative. I've known several people who used palliative care long, long before calling hospice.
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IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck
(written after she found out she was dying from cancer).
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband..
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil,
or was guaranteed to last a lifetime.
Instead of wiling away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle..
When my kids kissed me impetuously, I would never have said, 'Later... Now go get washed up for dinner.'
There would have been more 'I love you's, more 'I'm sorry's.'
But mostly, given another shot at life, I would seize every minute;
look at it and really see it; live it and never give it back..
STOP SWEATING THE SMALL STUFF!
Don't worry about who doesn't like you, who has more, or who's doing what
Instead, let's cherish the relationships we have with those who do love us...
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Thanks for posting that, Bella. I know I've seen it before but it is good to see it again.
OK, the palliative care appointment. I get there early, all ready for them to be on time and organized. Well, no. Expecting that was stupid. I was called in like a regular appointment, 15 min late, weight and blood pressure taken and sat in an exam room. (Remember, this is a family practice place.) The NP last time told me they meet with you in a special "education" room and everyone sits around a big table. I was hoping for good chairs. Nope. Me and the NP and one other team member, the pharmacist, in the exam room in bad chairs. Still, good talk about MY issues. An hour in, the pharmacist left (another obligation) and the MD popped in the introduce herself. I spent another hour talking to NP. I got forms for DNR type stuff and set up the next appt for two weeks. I could talk to these people for days, weeks. I'm pretty sure they learn as much from me as I do from them. I brought my list of non-estrogen vaginal moisturizers. I will send various things to NP by email (did I tell you I have her email address?) but I don't want to be a pest. This was a very good beginning and it will develop over time. Maybe I am too early to begin this and that's why I got so little attention from the other team members. But NP keeps saying my situation is exactly how this should work. I think so, too. I didn't ask about their opinion on medical aid in dying. They seem to be being careful about certain things for political reasons. They don't want to be squashed so early in their existence. They can't push themselves on people too much. At least that's what they said. I disagree. But they see the negative reactions where I don't. People are so ignorant about this topic. Case in point: DH asked about the appointment a few hours after I got back. I said, "do you know what palliative care is?" His answer, "No." This is a highly educated man with a huge vocabulary. This is what they deal with. And then the "oh, no, I'm dying" reaction. I told them that their web presence was zero. I did a google search on palliative care in Las Cruces, NM. They do not show up. The group at the other hospital does. I told them to get their hospital's web people on it. They hadn't thought of that. Something must have happened to make them afraid of self-promotion. I could really feel that. Anyway, I will send a few emails and see them in two weeks. How often do you get any medical providers to listen to you for two hours? Never. I got that at this appointment. I highly recommend palliative care.
(I have to apologize to Runor for stealing a large paragraph from an email I sent to her yesterday. I do my best writing to her so why not? I know she won't mind.)
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Jaycee, I'm glad you had a good appointment. Interesting that they are still learning.
I've seen way too many family and friends wait too long to bring palliative care. Everyone is so afraid that it means they have given up.
My friend/neighbor across the street was so secretive about her stage IV diagnosis. I understand, her kids were still young when she was first diagnosed. She did her treatments. Her hair grew back. A few years went by. I didn't know she was stage IV until she casually mentioned a new medication for her back.
She suffered. She had pain medication for her back in August, started losing her sight in October, and had her first seizure in December/January. She may have done some WBR. By March she had lost her words. She had pain medication, but not palliative care. When did hubby finally sign the hospice papers? Mid-April and she died late May. I think palliative should have been brought in back in August as well, and probably hospice in January.
As soon as the doctors had suggested hospice for our beloved Nana, we started the paperwork. I think the doctors were relieved. Maybe they were afraid to start earlier.
The doctors suggested hospice for my mom a few times. Dad was against it. He didn't want to give up. Finally the doctor took my brother and I aside. You need to consider this, sooner rather than later. My mom was only on hospice about a month.
LongTermSurvivor Stephanie was on hospice for about a year. She did very well. If I could guess, most people are on hospice about a month or less.
Mominator
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Maybe if hubby had been doing the suffering, he would have signed the hospice papers sooner.
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If anyone wants to follow my posts I'll be here.
Also, since my wife was taken off all chemo because she's too weak I have listed as to what I've been giving her. I know this probably should be in the herbal alternative medicine section but I'd like to not have my posts scattered all over if possible.
Taking Fen Ben & Vitamin E for last 7+ weeks. Something called Ashwagandha and AHCC. The last two probably for a week and a half. What alternatives do I have, no chemo she dies.
She stable for now and was taken away for a 6 day stay at a hospice place. It is only for 6 days per patient paid for by Medicare and Medicaid. It is to give the family a break and perhaps to allow them time to find a more long term situation.
I appreciate all the prayers and concerns from all you ladies
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Mike, good on you for posting. How are you coping with this very difficult situation? It must be really hard and I sympathise.
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Mike,
I am so sorry you are in such a heartbreaking situation. I have been both a patient and a caregiver, and I think in many ways it is much harder being a caregiver to someone you love. You don't want to see them suffer, but at the same time you can't bear the thought of losing them. Add that stress to the sheer physicality of caring for another person. It will wear you down to nothing if you don't get a break now and then. You simply have to take some time to care for yourself. As hard as it is, these next six days may truly be what you need to catch your breath.
I know Medicare paid for in home hospice for my mother. It isn't 24 hour care, but it is help and guidance and sometimes (at least for us) it was someone to hold our hand while we went through that terrible time. Also, they were a great source of information on resources that were available to help us.
Have you checked with the American Cancer society? They have some really good information on services you and your wife may qualify for.
I sincerely wish you all the best, Mike. Please know you're not alone. You can come here any time you need support. The wonderful folks on this site are here for you.
Trish
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"If" she comes home Kaiser will send a personal caregiver for a few hours each day. Also, they will have a daily visit from an RN. Besides that the woman across the street will help me change my wife's adult diaper. I visited my wife at the hospice care place today and she seemed a bit more lucid. Plenty confused though. I think the seizures (tonic clone seizure) was pretty bad and left her mentally impaired. Maybe she'll gradually come out of it. The unstoppable cancer bothers me the most. I was hoping the Fen Ben would work but I haven't seen any indications it has.
Yes, I am getting a break from it all. I crash in bed about 8:00 and am usually out most of the night. I hope and pray she will be able to come after her 6 day hospice stay. That's all I got left; hope and pray.
Mike W.
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I'm here Mike. So happy you were able to get some rest. Are they giving her the supplements at Hospice? I hope her stay there is comfortable for her.
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Just wanted to let you all know that Muddling Passed on November 11, in the am. Her son posted this information this morning on my thread and I know mominator was asking about her. This wonderful woman held her humor until last possible second. What an amazing human being. May she fly with the angels. Jaycee, let me know if she says screw off is ok for her to say!? We will miss you dear muddling. Everyday.... no more pain my friend, no more
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Muddling posted: "Jaycee, if I figure out how to say "screw you" from beyond, I won't say it TO you but whisper that it can be done"
I'm pretty sure I heard a soft whisper in my ear in the middle of the night last night. She's already tried it.
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that brings me comfort. It seriously does. ♥️💔 my thoughts are with her friends here and with her family. Her son notified my thread this morning. I hope they know how wonderful she was to us all. Asking about what she should wear. Her masters gown. Getting our advice. So special. No more pain sweet friend. hugs to you Jaycee!
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Just got back from sitting with my wife at the hospice place. I think I have reached my lowest point in the last few days. A kind of resigned sort of peace has come over me. Maybe it's my mind, some sort of mental protection kicked in. She's heavily sedated now, which is okay with me. Normally I don't like heavy sedation like as happened at some care facilities; that drug em up and stash em in the corner mentality. Hospice is differed. When my wife was awake she didn't recognize me and made sounds and frantic motions with her arms to show she was in pain. Two choices, heavily sedated and at peace or less sedation and it pain. Nurses have noticed her breathing change to short gasps, a sign the end is near. I want the best for my poor wife. Her body is so broken and wrecked with pain the best would be for her to pass in her sleep.
Thank you dear ladies for all your support. I know some of you will go down this same road as my wife and it breaks my heart.
Mike W.
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wow 💔 speechless, may you somehow find the strength to stay strong. What a good man. You both are in my thoughts. I myself very well may go down that same road, so that hit home heavily. I am so sorry you're going through this. Sending all the strength I can. ~M~
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Mike, hugs.
Good that you got some relief.
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