2roads
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posted
What a strong character she is and an example to us all.
-Forming a second circle around the first one.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Carol in PA
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posted
Prayer is wonderful...but supplying the heart with the nutrients it needs to make the energy it needs to beat, will greatly improve her quality of life.
Better heart function = more oxygen to the cells = more healing = less fatigue
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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sometimesdilly
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posted
I only have a few minutes, so one quick reply to you, Carol,until i can be back tomorrow.
Maureen's congestive heart failure is structural. Her heart does not have enough room to expand, and so doesn't and can't work properly.
It doesn't have enough room to expand because the tissue surrounding and near it is horribly thickened and rigid from the radiation treatments she required to survive cancer 4 years ago.
Her open heart surgery was to remove the tissue closest to and surrounding her heart, which they did, in order to give her heart that room.
The surgery hasn't worked, and one reason is that when they opened her up they found that much of her heart itself was scarred from the radiation, further reducing its ability to move as it must.
No medicine or pill can save her. A heart transplant could, theoretically, but it is extremely unlikely that she'd be considered as a candidate because of her recent cancer, and because she is unlikely to hold on until a heart became available.
Those are just the brutal facts of what is going on. I have moved past wishful thinking, see plainly what is happening, and as I've said, feel blessed that she is still here today and likely to be here tomorrow too.
Prayers are everything now, most of all for Maureen to stay at peace enough to be able to fully live for the time she has left.
Back tomorrow.
love, dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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merrygirl
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posted
Praying...
Posts: 3905 | From USA | Registered: May 2007
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sometimesdilly
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posted
(((((HUGS TO YOU ALL, AND THANK YOU ALL FOR YOUR PRAYERS)))...
did a sleep study last night and barely got sleep so am missing in action today, but have NOT missed the ongoing concern and prayers. You all are all the best.
hugs, dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
I spent a few hours with Maureen yesterday She looks terrible.. is literally down to skin and bones.
Maureen now refuses to talk about what comes next, or about her condition at all, which I can easily honor, for every reason.
At the same time, much of conversations with her take place in the almost-past tense.. as in, Maureen talking about how her children will remember her.
She is in pain and exhausted, which most of us can relate to for own reasons, but she seems in a far more distant place than I can recognize.
Does anyone else have experience being with a dying friend who wouldn't/didn't want to talk about what was happening?
All I care about in this situation is being the best possible friend to her. I am very afraid that my Lyme-related ditsy-ness and cognitive/emotional handicaps will make me get it all wrong--there is little time left to get it right, and soon enough there will be no time at all to say I'm sorry if I got it wrong.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I don't have the personal experience to give you the answers you seek, so I'll keep it short:
You can't do it wrong. You're there. With her, For her. You're a friend.
Posts: 797 | From New York | Registered: Feb 2008
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sometimesdilly
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posted
Carly- thanks for the support and vote of confidence, but I've already messed things up for her family once, when she was still in the hospital. That one still hurts and scares me.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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littlebit27
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posted
Dilly- Not sure how you messed things up with her family-I think I read all of your posts in here but maybe I missed something.
I don't have experience with a dying friend who didn't want to talk about it. All of my friends died suddenly, one at 20 because of a heart defect.
But my grandfather passed and we were at his bedside for his last few days, I was 14. All we did was talk to him. Let me know we were there and loved him. We told him it was ok to go, because he wasn't ready.
Your friend sounds amazingly strong. I guess I can imagine not wanting to talk about it if I was in her shoes, especially with young children who will be left behind.
My only advice is to be there for her, whatever she needs or wants, do what you can do to get it accomplished. Let her open up about dying when she wants to. Until then, just be there for her, to listen, to talk, to do chores she can't, take care of the kids, whatever she wants.
I pray for another miracle for her, it is so sad whenever wonderful, amazing people are taken from us yet murders and rapists get to live long lives (in prison maybe, but alive nonetheless).
daisyrlb
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posted
Dilly, May God give you wisdom as to what to say and not say. You are such a blessing to Maureen and her family. Thank you for keeping us updated.
Prayers for God's peace that passes all understanding. May His eternal love be sensed. He is there in the midst.
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
Just found this thread - please add my prayers for Maureen and her family. May they all feel God's peace.
Posts: 581 | From CT | Registered: May 2008
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You are doing an amazing job at helping your friend.
I know she does not want to talk about it, but HOSPICE is the organization that can help her and you put it all together.
If you reach out to hospice, if nothing else, they will help you with ways to help her. A quick call to them may get you a social worker who can coach you in some of your questions.
It is agonizing to watch, but you will have done your best.
Prayers for all of you, Wizard
Posts: 252 | From USA | Registered: Sep 2003
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sammy
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posted
Dilly, remember Maureen loves you for who you are. You don't have to try to do anything special. Just be you, be real, and be there. Love on her all you can. You are a true friend.
I'm sending you extra hugs and prayers. I wish there was more I could do.
Posts: 5237 | From here | Registered: Nov 2007
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sometimesdilly
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posted
This is what happened weeks ago, when Maureen had just had her surgery.
I had been speaking with her spouse daily, often multiple times a day. It was mentioned that so many people had been calling, it would be appreciated if I would keep Maureen's friends updated by email. So I was doing that.
When the news came that the surgery had not worked, that Maureen's time left was weeks or months at best, I emailed that too, and let everyone know that Maureen did NOT want her kids to know how bad things were. I put the part in about the kids because many of Maureen's friends have kids that are in touch with Maureen's kids, and I wanted to warn parents not to talk about Maureen's condition in front of their kids, just in case.
Well, the day after my last email went out I got a call from Maureen's spouse, and I was yelled at and told what I had sent was "devastating" to Maureen's whole family, and "inappropriate, however well-intended."
I can't begin to describe how awful I felt during and after that call, and still do. I thought I was doing exactly what I had been asked to do, that I had been helping by providing news so that Maureen's family wasn't overwhelmed by phone calls, and that I had honored Maureen's desire that her kids not know by making sure her friends didn't accidentally let the truth slip out in front of their own kids.
Even leaving everything else aside, the possibility that I had misunderstood such an extremely important request and situation made me (and still does) feel like that I cannot trust myself to do the right thing when it matters most, which is as upsetting as it gets.
I do get it that the situation now would be difficult for anyone to navigate. For example:
I saw Maureen today. She said that the fluid in her lungs has doubled in volume in the past few days, and that the tube in her lungs will will have to come out no matter what within a week. She then said- well, where will the fluid go after that?
I honestly don't know if she is in complete denial at this point and has convinced herself that there is a possibility the fluid will somehow magically disappear, or if she knows what is going on and is preparing herself in her own way for dying.
I can't and won't know which it is, because she has made it clear that no one is allowed to talk to her about any bad possibilities.
What is anyone supposed to say, then?
Also today Maureen said that for the past 2 weeks her spouse has been having multiple phone conversations and exchanging dozens of text messages and emails daily with someone at work, and that everytime maureen comes near, her spouse erases the messages/hangs up the phone.
Maureen thinks ..maybe an affair? Maybe her spouse is "tired of taking care of her, and wants someone else who is easier?"
I'm thinking- maybe her spouse is devastated knowing how little time Maureen has left, and that Maureen's refusal to discuss that reality means that her spouse is deprived both of the ability to comfort and support AND be comforted and supported during what has to be one of the worst times possible in any marriage.
But-- since my hands are tied and my mouth is bound shut too, how can I reassure Maureen by telling her of this other possible (and more likely) interpretation?
I think I would be challenged by this situation even if I was 100% OK. As it is, I feel very much at a total loss about what is best to do or say.
Any insights would be greatly appreciated.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymednva
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posted
I can't imagine being in your shoes, Dilly. You are right that her hubby needs to be able to work through this now, as well as later. It's a lot easier when the patient is aware of the situation.
Are you sure she doesn't want to know anything? I can't imagine not wanting to help prepare my kids for my approaching death.
I know of younger women who have died from cancer who were able to well-prepare their school-aged kids and that made it a bit easier.
The moms felt they had done what they could, when they could so didn't carry around any guilt, either.
I'll keep you, and her, and her family in my prayers.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sometimesdilly
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posted
hi ((((diva))))-
Yes, I am absolutely sure Maureen doesn't want to know , and that she does not want her kids to know.
Personally, I think that her kids have a right to know, and that they will be more, not less devastated when Maureen dies from their point of view "without warning,"and without the kids having a chance to tell her whatever is most important to them to say-- or to ask.
But, that's just my opinion and how I imagine I would handle the situation. I'm not in her shoes, though, so I don't know for sure what I would do, and either way, I can't and won't judge her or be critical of what choices she is making.
Her choices are what they are. She may change her mind and be more forthcoming tomorrow or the next day or in a week.
The question for me, given what her choices are as of now, is how to be supportive and loving when nothing of reality can be discussed, and her silence is building layers of other problems and additional pain?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Dekrator48
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posted
Dilly,
I'm so sorry that your good intentions were misinterpreted.
Since your hands are tied, I would just pray for her, and with her if she will allow it.
Lord, please help Dilly to feel comforted and to help Maureen feel God's love and comfort also.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Dilly a couple of years ago good friend of mine went thru something like you are experiencing.
The mom had cancer for a number of years and managed to fight it despite the odds. The kids had no idea. It wasn't til the last month or two that they even found out their mom was very sick.
There were only a few weeks from when they found out to when she passed. Of course they were devastated.
I wondered why she didn't tell them years ago about the illness and why they didn't know til almost the end.
I think that deep inside after fighting so long and so hard she still believed that she could once again bounce back. She and her husband didn't want to have their kids thinking about this years beforehand. Why burden them unnecessarily when hope was still within reach and time and again she beat the odds.
What mother ever wants to be in a position to tell her young children that she might be gone soon?? There is no comfort or solace in this for the mom or the kids or the dad.
I think that in situations like this hope and prayers jump in along with whatever fight is left.
That is what maybe stops a parent from talking about what might/could/will happen. There is no such thing as being prepared for death especially when a young child loses a parent. It's a profound loss whether a child knew from the beginning or found out at the end. Who can say what is best?
As you say you are not in her shoes. Neither was my friend.
My friend had an awkward relationship with the husband. Your friend's husband likely lashed out at you because of the personal hell he is going through.
You ask how can you be supportive. By just being there for your friend you are being supportive. Don't force discussion with her regarding her situation. Just stay by her side when you can and talk to her about the good times you had together ("do you remember when"), how much you love her kids ("that little guy of yours is such a charmer") Talk to her about how bad hospital food is. Tell her about something going on in the news.
If you are able, cook a big meal and bring it to their house. Go grocery shopping for them. Tell the husband you're coming over to spruce up the bathrooms or clean out the frig.
And about the husband....remember that his reaction is coming from the awful place he is in. Overlook it. Just be there for your friend and her family. You don't realize how appreciated that is.
I am praying for you, your friend, her children, her husband. May that family be blessed with a miracle.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Pinelady
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posted
Prayers for you and the families.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sometimesdilly
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posted
In case anyone has been wondering about my friend Maureen...
She is still alive. She had her lung drainage tube removed a week ago because it was too painful; turns out that's because her lungs had scarred over.
Her heart is still malfunctioning significantly. Among other defects, her tricuspid valve is leaking big-time, which is causing a cascade of other problems, but......
She is still alive, and it appears that her heart surgery-- and a massive number of prayers--have bought her at least months more time.
Thank you so much to everyone who has cared about and prayed for Maureen.
Witnessing what Maureen has lived through over the past few months of life has changed the lives of more than a few people. Every day she lives is a gift to her family and to those who love her, and so what we feel most of all these days is extremely grateful.
thanks again- dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
thank you for the update, I will continue to pray for her and her family.
Posts: 857 | From northern california | Registered: Dec 2009
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daisyrlb
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posted
Dilly,
Thank you for the update. No one knows when a person's time is up...not even doctors.
It is so wonderful she and her family have had more time together. What a blessing. Extremely grateful is always very good...every second of everyday...for we only have this second!
May God be honored and His love sensed by all.
Just said another prayer for Maureen...and you.
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
Thank you for the update. I am glad to hear about Maureen. I will keep her in my prayers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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17hens
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Dilly, what a good friend you are. Thank you so much for letting us know about Maureen. She will be in my prayers.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sometimesdilly
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posted
thanks for your support and prayers, (and hugs to you all) mom2, Daisy, Alana and Hens.
dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Thanks for the update, dilly. I had been wondering.
You truly are a special friend. Maureen and her family continue to be in my prayers, that they get everything they can out of the time they have left together.
That's the most we can all hope and pray for!
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