and perhaps inevitable...
multiple lung masses, largest two being 5cm diameter, one in each. 93%pulse ox still, but he's feeling the decreased space.
Some node involvement in the chest now. Liver involved. Rib cage. Pelvis, surrounding soft tissue, and hip.

Radiation on pelvis/hip to be considered next week. Pain is too great for him to get around the house much. Doc thinks this will alleviate that pain enough to make quality of life better for the three to six months he may have left.

As I've read, and well know, we cannot "pre-grieve" although we try. How I feel hit by a bus, I just don't know... We have been lucky to stretch this into the three years that we've had together since diagnosis. He's taking it so much better than I. He said he felt like 9 months last week.

I start my new job training Monday morning. I am very tempted to call and see if I can postpone a few months, but what the heck would I do? Something to occupy my mind, just might be good.

Im so sorry the results werent better news. I guess you are right that you cant pre-grieve. Nothing can prepare you for what will eventually come. Times like this make it harder to be the caregiver.

A new job would be a great way to keep you busy. Its a positive thing that will be helpful to you. Think of it as your own little escape. Hope you enjoy your new venture.

Best wishes with everything you both are facing.

Hugs - I'm so sorry! I would maybe see if you can do he work part time? Take care - god bless - and saying prayers!

I'm so sorry that you've heard more bad news. I feel that we grieve throughout this whole process. We grieve each loss, poor test result, loss of function, loss of our former lives. It's not to say that the grieving you will experience in the end of life is happening now. Like Christine said, nothing can really prepare you for what is to come.

As far as your job, perhaps you can try it out and see how you handle things. You probably want to give your manager or HR rep a head's up as to what is going on in your life outside of work. Hopefully, they will be nothing other than understanding.

I wish peace and comfort to you both in the coming times. Please don't hesitate to reach out when you need a hand.

xoxo,
Kerri

Christine, I am so sorry for the news you received. I think about you and Matt often and will surely keep you in my prayers.

You mentioned pre grieving and yes, there is such a thing. It's call anticipatory grief.... there are numerous psychiatric articles and hospice articles on that process. It may be helpful to know that what you are experiencing is normal. Caregivers have two "patients" the terminally ill and themselves. Caring for yourself during this time is often difficult as guilt is likely to try to rear it's ugly head.

I hope you and Matt are able to enjoy love and peace and you make this journey together. And please be easy on yourself... you've been through so much.

Love to you.

Dodie

Thank you for the much needed support. I am blessed knowing that you all will always be here for me when I need you most.

I am looking forward to starting work tomorrow. I haven't worked since Nov. 16th.

I have been surprised these last to days at how well Matt was handling everything. Then I realized that he's been aware this was coming and adjusting to it all along, hence the crazy moods and bizarre behavior outbreaks... makes perfect sense to me now, though it sure didn't at the time.

Love you all.

Christine

So sorry Christine, but he is a fighter as he has done so for the past months. I only wait for the same I hate to say it to happen to me, the way Ron has been and gone thru just how many times can he make it before his 9 lives are done I always wonder. We are all here for you to vent and please keep us posted, enjoy each day as it comes. Peace and Love to you both

Dear Christine,

My heart goes out to you and Matt. May you make the most of each moment you have together. I wish I had "pearls of wisdom" to share to comfort you, but just know a lot of people here care so much about you two. You are both in my prayers.

Love,

Shelley

Work has been going well, though I feel somewhat guilty for being unavailable. He's encouraged the opportunity though.
We are awaiting record transfers from the radiation clinic so that the new docs can figure out how much has been done to the hip/pelvis already. He's had two rounds of radiation to that area already.
I spoke with hospice Monday night to find out exactly what they can do to help with the pain. They said they'd admit him to hospital while they experimented with the pain meds then discharge him to home once they found something that worked.
Of course the nursing home option is there, as well as the home visits twice a week...
I am sure we'll go thru all of that eventually, but for now.. I just want his pain to ease up.

CM, I do not know what Rxs Matt's had, but I do feel your pain as we are in a very similar situation. The Cap Lap trial http://clinicaltrials.gov/ct2/show/NCT01044433 may interest you. My Dad joined it in December and I can tell you it is buying good quality time and is working for now.

Thank you Caco! I will check it out

I had almost forgotten how difficult things can be. The mood swings are back in full force. I'm feeling like I cannot do anything right by him. I feel guilty for working, for walking with ease, for being "healthy"...
We've been at odds more often than not today. He blames me, I blame him... I asked "maybe, just maybe, could we both be taking things wrongly?" He says "sorry i'm still alive"...
just makes me wanna scream, and there was a time that i'd have done just that then had a good cry...
Now, I know that it isn't anything I've done and there isn't anything I CAN do about it, so I just keep to myself in my office and wait it out.

wow sounds like me and Ron's living conditions, he stays downstairs and I stay upstairs, he eventually comes up to see me and talks a bit but goes back down. But he isn't mean to me and he isn't in the position Matt is in either. It's going to be hard, he's angry, angry at the world and you are in it and you are there so he lashes out at you. Don't take it seriously and you know what, go ahead and cry and go ahead and scream because you can and I know I would! I'd scream at him and I'd cry at him and I'd show I am also angry at what is happening to the man I married and love and there is nothing I can do in this world that can change what is happening. Only God can do that and you aren't God so don't beat yourself up. Pound your fists in the air and after you got it all out go and hold on to Matt and hug him with all your heart and cry on his shoulder and let him hold you and comfort you and if he resists hold onto him harder!

I think this is what I'd do.

Awesome Caco... and Yes CM... it wouldn't hurt to try.... hopefully his pain management is sorted out soon. Prayers and hugs to you both.

I almost wish we had two stories Suez, I'd be using it for sure!
I'm not sleeping worth a damn anyway, and it sure doesn't help when he's having a bad night too...
He just got home from radiation consult, the previous records didn't get to the new doc until this morning so she doesn't know yet what she can do, they just did CT scans and such to determine the area that needs the radiation.
I am a bit concerned about this since he's already had two courses of radiation to the area, and they were reluctant to do the second. Not to mention he fell the other day! Just had the leg go out and spiraled to the floor. Ended up with abrasions on his forehead, elbows, and knees.
I wish he'd just call for hospice and let them help get the pain under control. i think that he feels it's giving up to call them. i of course tried to assure him that it's not like that, and he could use them as little or as much as he needs... it's a jagged little pill to swallow i am sure.
I do think he forgets sometimes that i grieve with him. He puts on a shell of anger or indifference and thinks i'm just waiting for him to die... as if i am not a part of this journey.

Hi Caroline
I haven't been on this site recently and just caught up with your posts. I can feel your pain and am so sad for what you are going through. Emmett is doing okay but I keep waiting for the next shoe to drop and he too has good and bad days emotionally. What happened to the fantasy (at least mine) of a close and loving relationship as we ride off into the sunset? Hospise told me that they wish they would be called in earlier to help, that most clients wait until the last weeks to call for probably the reason you said, afraid it means your giving up. From past experience it was the best call I made, like a weight lifted off of my shoulders. I hope you can convince Matt to accept their help soon. Know you are in my thoughts and keep moving forward one day at a time knowing you are doing everything you can for Matt.

Been a wacky week... I am really glad that I DONT accompany him to the radiation clinic right now. His daughter visited last night and he was telling her about the new doc. He called one of the front desk ladies a "twit" and the when the doc came in, she says "I don't know what that means, but don't say it to my staff again"
I LOVE that his daughter said, "Dad, you can think that, but it's not right to say it to people".
Glad I'm not the only one thinking that isn't acceptable, no matter how much your life sucks.... It's not their fault.
He's usually on better behavior when I am with him because I will totally act like his Mom and call him out on it.

We've both been out of anti-depressant and anxiety meds for about a week now, and have been very quick to clash. Thankfully, we'll be able to fill the scripts today.
Never underestimate the value of a good prescription!!!!!

OMG, sleep is a beautiful thing! Feeling much better today, however, when Matt woke up, he could stand, but couldn't walk. I see bedside facilities in our near future. =(

I have a question to all of you who read these...

Do they help?

It helps me to be able to unload things here that I cannot say at home, but the thought came to me this morning, how is another carer going to feel coming across the bad/ugly of it all. Some things on the forum scared the ^&** outta me when I first found it. Though now that I am facing similar things they bring me comfort. Perhaps I just answered my own question. I've been feeling insecure about venting, and my situation is only going to get worse. His memory and some motor functions are going. morphine? brain met? I don't know, and likely wont find out in this final inning.

Short answer: YES! Please, Please feel free to vent any and all times that you feel the need - especially when you cannot share with those close to you at home. Chances are there is someone going thru the same pain and sadness and frustration that you are. Fortunately, for CG's and survivors, this forum is "a la carte" where you can choose those posts which will be most helpful or comforting. You can choose to hold off on those that may for a time, be too scary and painful to even consider. And we will all understand. When sadness is shared, it softens the pain, just as when happiness is shared, it increases the joy. I have not been where you are now, but when I first came here to OCF, there were two unforgettable women who have been where you are now: Cookey (Liz from UK) and JAM (Amy from Arkansas). If you look up their posts/blogs, you will see the honest, raw emotion in all its ranges, all mixed in with the love and compassion they had and how they found the strength to go from day to day and share what they had with the rest of us. Stay with us. It does help.

((((Anne-Marie))) Thanks lady.
And all of you!

I had a terrible day yesterday, his kids came over and he was just brutal! Acted like I do NOTHING to take care of him. At one point he even said "my caregiver hasn't fed me yet"... He'd been awake thirty minutes and I spent that just trying to get him to pee and put clothes on him! He was yelling at me over stupid stuff and eventually I just walked out. Wandered the local grocery as long as possible before coming back.
I was ready to tear into him for treating me that way, but I think his daughters might have done that for me. He didn't ever actually apologize, but he was civil, and sometimes that's as close as it gets.
His mind is slipping a bit. Or mine is. Who knows. We have a mystery prescription pick up/drop off that neither of us remember doing. Although I recall seeing him come home from radiation two days with scripts, he only remembers doing it once. Adamantly, HE DID NOT do it.
I just said, okay, I guess I could be losing my mind, whatever.
His strength is basically GONE. I dressed him for his daughters visit in a sweatshirt and shorts, and after about 5 minutes he told me the shirt was too heavy to move in.
I said "OMG! Butch up will you! It's just a f(*(^* sweatshirt!"
----(classic denial, I want my husband to function!!!)
He then said that it might be time for me to go because things will only get worse.
I wonder if hearing confirmation that he has so little time left has caused him to just sink into it. do you know what i mean? like he's taken the last deep sigh and is just waiting for the inevitable.
It's really REALLY difficult to watch his decline. It's been several weeks since his hip has been a bother, but now he's barely able to walk, fights to maintain bladder control, I am SO ready to get some help from hospice, if nothing else just in the medical equipment that they can bring to help him get around and take care of daily duties easier.
He seems determined to wait for some reason.
Can I call the doc about it?
I've asked him to sign medical power of attorney forms, but he's always had to have a grip on things, he couldn't let me have that kind of control.
I will make it a point to call his doc and ask, as well as talk to him, if I can find him awake and lucid for long enough.

Thanks for listening.
Christine

Oh my, and do you ever need some help from hospice by the sound of things. I should think his doctor could help convince your husband that hospice is in his best interests at this stage of his illness. Perhaps an admission for symptom management and if able, to return home with supports in place. This is an extremely difficult time for both of you and I hope you are able to get the help you need to make your remaining days together pain free and peaceful.

I've always heard of good things about hospice, but one thing that sticks in my mind is when I heard someone say that going with the hospice decision does not always equate with a death sentence and that some hospice patients actually do get better and come out of hospice to go on to a normal recovery. Something similar happened to my ex-husband when he was very close to his demise. He was in the hospital on life support and had made known his "do not resuscitate" wish. Our 3 children, his present wife and other relatives were all around his hospital bed when the nurse came in to remove the life support. Well, wouldn't you know - he didn't expire as everyone, including him, expected! He was well enough to go home, with his wife #2 (I'm #1) and enjoy going to Walmart in his beloved pick-up truck. They had another two weeks to enjoy some happy, peaceful moments.

Christine, I hope that whatever is in your future, that you and your husband will have some happy, peaceful moments to share.

Christine, I think that you are doing everything that is humanly possible for you to to, and hope that you can call in the reserves in the form of hospice very soon. As a religious person, my mother was able to say, let go, let God at the most difficult times. My thoughts are with you.

I will definitely be reaching out for help this week. I haven't had a moment to myself yet today. Woke up, took my son to school, got breakfast for Matt and sat with him until work at 9. 11 break was spent refreshing his drinks, emptying containers, giving meds. lunch break was spent sponge bathing due to terrible sweats that he's been having. mid bath, his ride to the hospital shows up (early) so I rushed to finish, get him dressed, then help him to the van since it snowed here I didn't want to risk him falling. I then had 10 minutes to grab a drink, throw the bedding in the wash and get back to work. He gets home before my next break and it's spent explaining why the bedding is in the dryer and not on the bed because he is freezing.
I grabbed the temp cover that I ALREADY had laying on the bed and covered him up.
PLEASE GOD, let him sleep a while now.

You poor thing Christine...my heart just goes out to you!! I'm glad to see you will be reaching out for help because you need it bad!! Continuing thoughts and prayers for you and Matt.

Hugs,

Shelley

You really do need a break, Christine . . . You are doing such a tremendous caregiver job. A little help (or maybe a lot) for both you and Matt would help you both to know you are not alone on this difficult path you are traveling. And if things can be made a little easier for you and Matt - there may be more time for some sweet moments for the two of you. I sure hope so.

Radiation Oncologist found mass in spine today. Once the hip treatment starts to benefit and pain lessens she plans to begin radiating his spine around the shoulder blades too.
Will double his time at the clinic.

Im sorry you and your husband are going thru so much. Poor guy must be in some terrible pain. Hope he gets some help when the radiation starts.

He is definitely in some major pain. I feel at a loss. I don't know HOW to help him. I feel like my timing is always 'off'.
If I go to hug he's gotta shift position, if I want to talk, he's too tired or can't hear me, etc.
I spent a few hours just listening to music tonight, and that was definitely good.

I brought up hospice to him and he says he doesn't see what benefit they'd be.
I asked if he would like me to tell him how they can help, and he got upset. I tried to tell him I didn't feel like I was enough to care for him but I started tearing up and he goes, O great, here we go again...
Hence the few hours alone with music.

God never promised life would be easy.

I wish there was something I could say that would just fix everything or just help a little. I'm sure the pain is affecting Matt's ability to be able to hang onto some measure of control when so much is out of his control and he can't help but lash out at someone he loves. I can see why he may not want to see the benefit that hospice could be since it might translate to him as giving up another measure of his control over his life. I have not been in your shoes, Christine - but my son and I did go thru a point where anytime I tried to touch or kiss him or hold him, it was too painful for him. Any sound, or light or movement hurt. And he would not eat. What helped us was when I took more of a "nurse from Hell" attitude to get him to eat. Right after yelling at him, I left so he would not see me crying uncontrollably all the way home. I sure hope someone else can weigh in on this because I would not want to suggest anything that could make things worse. I just wonder if Matt would take a suggestion of hospice help more easily from some other family member or friend - especially if it was mentioned as help for YOU?

We're pulling for you, Christine. I think that Anne-Marie's idea of having another family member bring up the hospice idea is worth a try.

My wonderful stepdaughter sent me this verse via text this morning...
1 Corinthians 13:7-8
Love bears all things, believes all things, hopes all things, endures all things.
Love never ends. As for prophecies, they will pass away: as for tongues they will cease: as for knowledge, it will pass away


Regardless of the madness, sadness, and craziness that we endure, LOVE remains.

Happy Valentines to all of you.

Christine

I have an idea...why don't you call hospice but don't tell Matt it's hospice. Just tell him you need some help in caring for him. I've heard so many wonderful things about hospice care and I'm sure it will be a relief on you. It sounds like he's freaking out when he hears the word hospice, so why does he have to know?? Just a thought...

Hugs,

Shelley

Yes it's to help you Christine, you can't do this all by yourself now, trying to work and take care of him, not easy. Tell him that, tell him YOU need the help to take care of him to make him comfortable and warm all the time. You will still be there of course but you will have a "helper" to assist you say if you gotta go potty or somethng they will keep an eye on him or when you need a shower you know. Tell him it's not just for him its for BOTH of you.
Good Luck Christine, try to hold them tears back if he gets pissy like that when you cry I'd try and be stone cold actually when telling him about getting help. Stay Strong honey!

it requires a doc referral, which he has to request, then it requires an intake interview at the hospice location... no way around him knowing.
I am having a better day today. I am trying to remind myself more often to live in the moment and just let the things that bother me roll away.

Hospice has expertise in pain management. Perhaps Matt would be willing to speak with hospice about what they might be able to provide to him for pain control.

He has to request it? By any chance did you do a power of attorney thingy? I have the "power" for Ron and I'm not even married to him, you should be able to get that being his wife and all. See that's why I'm able to call docs and tell them stuff and let them know what Ron needs that he won't say anything about, and I am allowed to be told anything about him from nurses and docs. I had to sign alot of paperwork and I think Ron had to of course sign too. How would he be if you suggested this to him too? If I'm wording this wrong or calling what it is wrong feel free to correct me. But pretty sure it's POA. I don't know if cuz you are his wife that you need that though so...maybe you can ask doc for referral for hospice. You are legally I think cuz of marriage to be able to I think. Right?

Suez, he's refused to sign a medical POA form. I got the documents about a year ago and brought them home, I guess he doesn't trust me? Typing that(saying it out loud) makes me really sad.
=(

Christine you mention a step daughter. Would he consider giving power of attourney to her? Just a thought.
I have it for my parents as they do for me.

That is likely Gabe. I was reading a recommended form for our state and it listed primary POA and secondary POA, he may accept it if both of us are listed.

I just don't know WHEN to talk to him. On the rare occasion that he isn't in a terrible mood, if I talk about anything to do with cancer/dying/doctors, it puts him in a bad mood.

He needs to face this stuff and get it settled NOW.

I will just have to put my foot down.

Thank you all!!! Wish me luck.

Christine - It seems to me that rather than "not trusting you", it's more the idea of having to relinquish control to someone else. It can be very stressful to make changes and face something unknown. We all prefer making our own choices and it feels better if we can make those choices ourselves. Perhaps there is a way that Matt would be able to have a choice that would keep him comfortable. Since he does not want to consider hospice, what if he had a choice between hospice and going to a nursing home facility? - Perhaps as a trial to see how it works? Or maybe a third choice of a Professional Nurse that could come help with his care? (If it was one of those athletic looking no-nonsense-do-what-I say types, he might realize what a sweetie caregiver you are!)

I put on my armor and attitude last night and told him he was NOT going to determine what my opinions were, and I gave him the courtesy of listening to him, he can by God do the same for me.
I also told him he was not going to leave me wondering what the hell to do and to fill out an advanced directive.
(he of course says, he brought them home, I should have filled one out) - ugh
So, I said, fine, just make me POA and I'll handle it!!!!!

And, much to my joy, he said, okay, get the form.

FINALLY!

I just had to get demanding.

Happy Wednesday everyone. Hope it's a good one.

woo hoo put that foot down woman!! You have to be strong for him, he is feeling weak and vulnerable so you have to be the stronger person, just exactly like you did! It's not giving you power to commit him or anything it's POA IF and WHEN you are needed to make a decision, I think cuz you are his wife legally you are allowed to know all about his health and care from docs or is it still protected by HIPPA? So if it is now you will be able to call the docs, tell them what is up and tell them what he needs and get thier opinion. Like I always call Ron's docs for him and I'm allowed to be told anything about him. Ron also had signed a DNR when he was sick with Non Hodgkins, when he went in this last time for surgery he said "now don't get to quick with that DNR" I wonder if we should take that out now...it was when his chances were bad. Now he's alive and kickin! Hmmm I best check on that.
Go shine your armour for the next time you'll need it and wear it proudly when you do, you have done great!!!
So proud of you!

HIPPA is a pain in the ... we had to fill out a form to allow me info via phone if he wasn't present.

Thanks Suez for the 'flowers' so to speak. I feel better. You make a good point, he's weak, he's got no control over what is happening to him, I NEED to be in control and let him see that I've got it covered.

I'm wondering if anyone has any info on spine mets. PM me? I'll also post in a more relevant thread to find out all I can.

Love to you all,
Christine

You, my dear,are a hero. I pray that you will be willing to share your journey with other care givers. You are truly an inspiration. Really, I was so blessed to read all this and see how you are working through it and handling everything. I can only hope, that if I need to be, I can do as good of a job.
Blessings,
Kathy

Hi Chris,

Morphine and brain mets do make for some really awful attitude problems. I'm sorry you are going through it. My heart is with you and Matt. You are such a loving caregiver. Matt is lucky to have you. I hope you are able to find some time to concentrate on something just for you.

I remember reading posts and steeling myself for the battle from hell. There are great gifts here. There is the immediate gift of loving family on the OCF forum who will help us through the process no matter the twists and turns. And, there's the legacy that remains from all the caregivers who have walked the path ahead of us. One of your hands receives the gift and one of your hand gives the gift. Thank you for helping me when I truly needed a sister, a confidant, a friend, and an OC tour guide.

I hope Matt agrees to allow hospice to come in and help. It really is a godsend. It does not mean that anyone is giving up on him. It just means that there is a need that should be filled. I'm sure it would help relieve a great deal of stress for you and for him.

Take care, dear girl.

Sending a hug your way.

Love,

Sandy
xoxox

I am still working on convincing him to call hospice . He's already fallen three times today. First was 330 this morning, he just fell out of bed and hit his head on the dresser. Then fell once on the way to the restroom, and again on the way back at 7.
I would think he'd get tired of falling down and seek help.
I told him that the spine mets can affect his ability to walk. Perhaps he will think about it differently.
They also seem to be radiating his sternum now?
I really dislike not making it to the doc meetings for now.
I will have to call this new doc and find out just what the hell she is doing.

Hi, Christine,
I know that this is stating the obvious, but please make sure that the doctor knows about the multiple falls within a few - I think this may be an intervention red flag for them. Thoughts and prayers with you.
Maria

We had quite the amusing outing Friday night. Matt's first real experience with those motorized carts at the local warehouse club. He failed to follow me, and went all over the place, not listening to directions... it was at the time disheartening, but I can really laugh about it now.
Again at an office store, driving in circles around the desks set up, as if trying to find his way out of a maze.
He's out of it a lot. I have learned to just make some sound of acknowledgement when he says bizarre stuff anymore.
It's easier than trying to set him straight, which is usually an impossible feat.
Mobility is still an issue. I really can't tell if the radiation to the hip is helping, but the spinal met. could be causing problems moving his leg too.
It's just a guess at this point as to what area causes what.
His daughter that lives a few hours away has said she will be making trips to see him every other week, and his local daughter is still visiting frequently. I LOVE having some local support and they usually back me up when it's needed.

When the doc says that time is limited, it's hard to decide when to worry. Like tonight, he seems to have a fever. In the past, I'd be prodding with a thermometer, pushing tylenol, and grabbing a cold rag asap. I touched his face and mentioned the warmth, and he shrugged me off. The concern wasn't wanted.
Am I slacking on my duties if I don't sweat the 'small' stuff at this point?

Sounds like Matt had a great time with the motorized cart! I can just picture him zipping around the store and enjoying the control it afforded him. I'm so glad you have some local support with the daughters. I'm sure it helps Matt to feel very well cared for, and the shared caring is good for you, as well. Sometimes caregivers need caregivers, too! Christine, you are definitely NOT slacking in your duties to "sweat the small stuff". My son sometimes felt I was "hovering" too much, also known as "helicopter Mom". Whatever feelings you have as caregiver are important so if you adopt the "Never let them see you sweat" mode at times with Matt in following his lead, you could still keep it in mind when you report the things that concern you to the doctor (like falling, hi temp, etc.) You are an awesome CG!

I finally get him to agree to the phone call to hospice, and he tells me he will meet with the nurse to get information, but he wants me GONE while they talk. WTF????

I am SO hurt right now.

I tried to ask for details, and he just said he was NOT going to talk about it with me. End of story. Either he's very confused about how to protect my feelings, or he's a complete bastard.

Much as I love him, I want to say he's just confused about what I can handle.
Although, he's said before that he didn't want hospice because it was just to help me.
What am I supposed to "earn" by working my ass of?
I was up until almost 3 am trying to finish my day.
He has no idea what I do because he SLEEPS through it all.

i am completely overreacting. I know this. He loves me, he needs me. So it's got to be something that he thinks I can't bear, or that he fears will make me think less of him.

Today he seems mentally clear, but unable to identify things right in front of him.
His glasses, his crutch... I had to point them out to be found.

I suppose that a met could have already made it to his brain.
This ticking of time goes by so swiftly when there's only so much left.

Oh Christine...only Matt knows what's really going on inside his head right now and he won't let it out. I hope that he will be able to stop being stubborn and making you feel bad soon before it's too late and you will remember him being mean to you...maybe try explaining that to him? Tell him you want to remember him as the loving man you married and not this way, tell him you understand he is probably scared and putting up this mean defense to protect you. Let him know it's OK to be mad and angry and sad of course and you are here to hold his hand thru it all and be there for him. But who really knows what it is causing if it has gone to the brain...I'm so sorry.

Christine - you are right, he does love you and it is so difficult for him to take in everything that is happening to him. I think it is just as you say - that it's something he thinks your can't bear. And that's why he rather you not be there when he talks to the hospice. He's probably afraid he'll break down or get some news or suggestions that will upset both of you. Men just don't like to appear weak in front of those they love. I would allow him what he requests. I know it's not the same, but there were many times when I would hide in the bathroom when I needed to make phone call re my son. I just didn't want him to hear the quiver in my voice that held back the tears while I asked about something re his care. It is such a sad and difficult journey that you are both on. Sometimes there are just no adequate or soothing words. Sometimes it's just a look, or a touch that can convey how much you really care.

Christine, I think about you and Matt more than you will ever know and continue to keep you in my prayers. Just wanted to offer another perspective on Matt wanting his meeting with hospice to be private... I can only imagine the thoughts Matt may be having about hospice which is considered by most to be end of life care. At least in NC one has to be within 90 days of death for hospice to even get involved. IF Matt is struggling with his thoughts and/or beliefs about the last weeks/months of his life, he may have some questions or wishes that he doesn't know if others will understand or support. I'm sure his motives for privacy are not meant in a negative way toward you.

Sometimes people like to put on a brave face for their loved ones and do try to "protect them" by not discussing their fears, wishes, questions about death. This is gonna sound stereotypical but I strongly suspect that many men have a real issue with showing what they perceive as "unmanly" emotions. Like Ann Marie said, they don't want to appear "weak".

Talking about a terminal illness or impending death is very uncomfortable for many people. They don't know what to say or if they should say anything. It's not something we are taught how to handle. Many just walk around the elephant in the living room and pretend it isn't there. Some patients like to live in denial and refuse to believe they are dying (a livelong friend of mine who died of breast cancer with mets to liver, lung and brain was like that - she got madder than hell at me when I implied a month before her death that she was not going to live). Others want to make sure their wishes are honored and respected.

I don't know what kind of conversations you have had with Matt or if he is even willing to engage in that type conversation, but you can let him know that while you dont understand his need for privacy that you respect it, and if you feel emotionally comfortable, you can assure him that you will be there for him without judgement if he wants to talk about his fears, wishes, etc.

Remember, you and Matt are both doing the very best you can with a terrible situation. You are a wonderful caregiver and dont' ever question that. But remember also that you are human and give yourself a break.

Love ya!
D

The nurse came this morning to talk to Matt. His BIG issue was that he was afraid that if some NEW treatment became available that he wouldn't be able to come out of hospice and try out that new treatment.
He was afraid that it was a one time option.
She cleared up all of his questions.

Last night, he did tell me that he'd been acting like a complete horse's ass regarding the whole thing and that I needed to be involved in all steps along the way. (wow)

Not sure how long until she can get the equipment sent over, but soon there will be a walker, wheelchair, shower chair, bedside facilities, and oxygen. WOOHOO!!!!

The fact that HE agreed to oxygen amazed me. I am SO glad that he realized he will feel better with it.

I look forward to being able to get out of the house for a day WITH him soon!

yay!! Absolutely wonderful AND pretty much what we all said bout how he was feeling too. Probably the nurse helped him feel better about this decision and he now feels better himself and about himself. Woo hoo so happy for you both! Go out and enjoy each others company.

That's wonderful news! So glad the nurse helped him feel better. Sounds like he was pretty sweet to you, too. Hope things continue to get a lot easier for both of you.

Equipment was just delivered to our house! Talk about service! OMG!

So, upside downside.... he can't operate the tv remote anymore, has no idea what the buttons do.
Can't operate his fancy "smart" phone anymore.
Tried to drive his wheelchair down the front steps to treatment van a few minutes ago. I had to stop him and tell him to get out of the way so I could move it to the ground level.
Mobility is going to be a dangerous thing.


Upside... I found an adorable mini pinscher that I am considering adopting to be my "friend" through this all.

He actually spat on the floor in disgust when I mentioned it to him, but she is for ME and I am doing it.

Love you you all, and peace.

Christine

That really was quick service on the equipment! I'm sure it will make things a little easier. And I'll bet having a new little "friend" around will help, too. Let us know how the adoption goes.

Please try to remember what Matt was like before OC and let those memories be the ones that define your relationship. He isn't the man with whom you fell in love. He hasn't been the same man since he was diagnosed. Heck, J isn't the same person after his ordeal and he turned up as misdiagnosed. I'll wager that every step on Matt's journey has had some impact on his emotions and has caused a negative psychological reaction.

If you add the psychological turmoil to the physical spread of the disease and the effects of treatment and pain meds, it is enough to turn the man you love into an acquaintance who you really don't like very much...or worse, an antagonist who is about as connected to you as a surly stranger. It's not fun. I can imagine how much of a challenge it must be and I'm terribly sorry you are having to experience it. On top of everything else, he's a man. They are offended by their own weakness sometimes. They can't bear for the people who matter most to them to see them as weak or needy.


My sister was married 24 years before her husband lost his 4 year fight with lung cancer. They were so much in love and were considered a match made in heaven. Then, the cancer and the treatment and pain meds took much of it away. He was awful to her. It broke my heart to hear her repeat what he said to her and to hear how he treated her. But, we all understood what was happening. He was being taken away from her and us. We couldn't judge him. He wasn't the same man anymore. Cancer had taken him away quite a while before his actual death.

It is odd to mourn a loss before it occurs. My father-in-law used to call our house several times a day. When the hallucinations and odd behavior from the cancer mets and pain meds became too much, my mother-in-law took the phone away. I immediately noticed. It was then, with him becoming out of touch with us, that I started to mourn losing him.

Cancer always takes them before we are ready to let them go. Often, cancer takes them before their body is ready to let them go, as well.

My thoughts and prayers are with you and Matt. I'm glad you have decided to get the dog. It will bring you lots of joy, a nice diversion, and the loving loyalty that you need right now.

xoxox
Sandy

Sandy - you phrased that right on, cancer does take them before their body is ready to let go.... however, his body is defintiely letting him down lately.
I cannot count the falls he has taken. And I fear that he isn't getting adequate care right now with me working, even if I am at home.
He is stubborn and willfull still wanting to do for himself and when he falls or has an accident he gets pi&&ED.
I am not sure what to do, but the hospice social worker comes wednesday and I will get some advice.

Christine, I always read your posts but dont always comment. I cant imagine how difficult this is for you. Just know you are a great caregiver. Im sure its very frustrating. Ive always thought of caregivers as true angels here on earth. You certainly fit that bill. Good luck with your Wed. meeting.

me too. I have been keeping up with your posts and crying with you. I'm so sorry it has come to this, but you are teaching us caregivers along the way. Thank you for sharing your journey with us. You are a warrior. Know that you are loved!!
Blessings,
Kathy

I feel inadequate to teach anyone, but if anything good can come of this journey, I praise God for it.
It's good to know you are there. I appreciate the comments, even the ones when you don't know what to say. It is good to know I am not alone.

Love,
Christine

I have a question to put out here to everyone...

How informed would you make the daughters (in my situation)?
The youngest is holding onto her faith and praying with her church group, the eldest seems to really be in denial. If he fails to complete a sentence or gets jumbled up it will make her tear up.
Should I tell her, that's the easy stuff?

I also am reading everything you post and am so sorry for what you are going through....I am just wondering how old are these girls Christine?
Sending you another big {{{hug}}}

25 and 28, the youngest is married, the oldest is a single mother

Hi Christine

Firstly, so sorry that you are going through this, but I see your family and faith are carrying you through with dignity and grace.

Your question regarding your children is a difficult one, particularly as I have no children. So I am going to answer using my own situation when it was my Alex who I wanted to protect from the ugly truth. Just in case this response turns into an epic (as my posts mostly do) the short answer to your question is: as much as they ask for and as much as you feel comfortable to give.

Alex and I had some awkward silences at the time of diagnosis whilst we both contemplated the unthinkable but didn't want to raise it for fear of upsetting/destroying the other. Alex wanted to talk but didn't know how I would cope and I was fearful of forcing Alex into thoughts that he might not have considered and which might cause him to fall apart. The thing that I think might be common to your situation and ours is that Alex felt the need to protect me when what I actually needed was to be allowed to support him. And Alex needed permission to express his fear and guilt. To do that, we needed to address the elephant in the room.

I believe your daughters, if given the opportunity might want to step up and support you through the next few weeks and months.

If it were me (and remember I don't have kids), I think I would say something that gives them permission to talk or ask questions without fear of upsetting you and then proceed with an eye on how they are reacting to the information. I think you will be able to tell how much information they need by their questions and reactions.

I would also be inclined to speak to each separately at first as it may be that one doesn't want to know and the other wants all the detail. Then they can go off and discuss everything together (which I bet they have already done).

Christine - I think that Karen has shed great insight on this and I would agree that saying something to your daughters in the way of allowing them to ask questions would be helpful. In softening whatever you say to them, perhaps you could include something positive like the help that hospice is bringing to you and Matt. Everyone is different in how they react to things and how they grieve and you know your children best. Being in "denial" is a normal response and needs to be allowed. I think knowing is better than not knowing the real situation. We've all felt the anguish of not knowing and waiting for results of some test or procedure. And of being comforted when others joined us to help us through it. The tears shed need to be acknowledged and shared to make the sadness a little lighter to bear. Whatever information you share with your daughters will make it easier for the three of you to support each other in whatever way is needed. Hoping for some peaceful moments of comfort for you and Matt and your girls.

Christine, I think you should sit down with the girls and have an honest conversation about what is going on. Let them ask all the questions they have and answer them to the best of your ability. If they aren't aware of the situation and what is going on they might resent you if something happens. My kids are 24 and 26 and I am divorced from their father. If something was going on with their father I know that they would want their step-mom to give them all the information she has. I'm so sorry that you are going through this but appreciate your honesty.

As morbid as it is when my mom was dying from pancreatic cancer I wanted to know the stages and what to expect. I know that every patient and situation is different but it helps us caregivers to hear the good, the bad and the ugly.

so, the daughter thing took care of itself today with the oldest, she stopped by to visit...
first of all, he would NOT get up and going today, blew of radiation completely, wouldn't answer the phone, etc...
So daughter comes over in the evening, I am already working my shift in the office (right next to bedroom) I hear her talking to him, then BANG... he had soiled himself in bed, she was trying to assist him up and into fresh clothes, he pulled back not wanting her to touch him, and he fell, yet again. EVERY day he is falling.
Stubborn as a jack*** for sure.
She did stay to get him back to rights and even cleaned the kitchen for me while she was here. Plans on being back on Thurs.
So glad she was here today.

On a side note ladies and gentlemen. I am terrified. Regardless of the strong front I try and maintain. I am so scared. I find myself crying more and more often.
I thankfully have no work today (wed) and I will get to get out of the house with Matt for a while.

Sending you love and strength. I sure wish you weren't going through this awful experience. Hoping some how some way you will have some relief. I am glad the daughters are now more aware of the gravity of this situation. I am hopeful that they will now realize that they must support you both during an extremely difficult time. It is hard in your 20's to have to face such an intense situation - none of thier peers are likely going through this so they have no idea how to conduct themselves and for them it is just terrifying and frightening I'm sure. This is how I felt when my mom was very ill and passed away in my 20's. It was very very difficult and sad - almost to a paralyzing degree.

xooxoxoxoxoxoox KATE

We are too hard on ourselves sometimes and maybe a few moments of "weakness" within our trusted circle, will not only allow us to share our fears but also give others permission to share theirs.

Of course you are terrified - you wouldn't be human otherwise, You bear more burden than anyone else. If the added stress of staying strong on top of the stress of the current situation isn't enough, you also have to deal with the fear of the future which at times can feel like the greatest stress of all.

If you can't do it with trusted family member then do it with your hairdresser but find someone who will listen while you let it "all hang out". Everything. You will be amazed at how your perspective will return after you let the torrent of words, fears, resentments and tears out that you are holding back right now. If you can find someone prepared to hold you until you quit crying too, all the better.

My saviour was a work mate from 500 miles away who would ring every couple of weeks to check up on me. And every time she rang, I thought I would keep my act together and not rave on like I did last time. And every time, I would rave on for another 2 hours, just like I did last time. And every couple of weeks she would ring again and let me rave on again. Now she is the one in trouble, and I ring her every couple of weeks to check up her. And SHE raves on for a couple of hours. Do I feel resentful or think less of her? Absolutely not! I am grateful that I can pay her back and also a bit flattered that she knows that she can be honest and that I will not let her down.

Christine,
If we can't be honest on here then we are not serving the purpose for being here. Please know that our saying you are teaching us or are our hero doesn't mean we think you aren't struggling. We cry when we read your posts so we know you are living hell right now. We just want you to know that you are showing us that it can be handled and we aren't alone should this happen to us.
So glad his daughter was there to witness things first hand. That should open some eyes and make it easier on you. Physically anyway. Emotionally, just hang on. I wish I lived close by to give you a real shoulder to cry on, but I am here.
Love to you,
Kathy

I wish I could be there, too, Christine - to give you a big hug and try to make things easier for you. I'm so sorry about Matt's falling. . . he is probably just trying to assert his control over something, when so much has been taken out of his control. It's good that the daughters have a better idea of what's happening and can help. We are all here anytime you need to vent or cry or scream and share your pain and frustrations. It would be good (as Karen suggested) to find someone close by with whom you can just let go and release some of the pent up feelings. . . .maybe the hospice people or the doctor who might be able to give you meds to help you get through the difficult days or moments? Please come back here often so we know how you are doing. Sending you a great big hug. . .

I just want to reiterate what all the absolutely lovely, compassionate, empathetic posters above have advised.
I am crying buckets with you and for you too - and for me.
To me, you are coping amazingly well. Thing is we don't have any choice, this escalator keeps going.
I am pleased your daughters now have a fuller appreciation of what you are dealing with 24 hours a day. My sons are 26, 24 and 20. They too are involved in our family journey. This is their dad. They have a right to know and only then can they make a decision on how they will react/ cope. Thing is I want to protect them and them me. Embrace your girls, I'm sure they will now be there for you both.
I hope you do get yourself a little dog, pets bring such unconditional love and
solace.
Lots of hugs and love to you,
Tammy

So, the day started on a rough note. He wasn't wanting to get up, so I had to put on my "mean nurse" hat and make him get going. Then we fought over meds because he wanted his morphine again too soon and I took the bottles away. He proceeds to put on a "then I'm not going" pout, so I tossed him the bottles and said, "whatever, take them all, what does it matter... just get in the **** car." He's using the walker and he lets me help him down our front steps and into the car.
20 min drive over to radiation clinic. He gets out of the car, takes two steps with the walker and fell back into my arms.
I lowered him to the ground easy enough, thank goodness I was there.
I had to lift him upright ease him back into the car and go inside the clinic for a wheelchair. Walking was no longer possible.
When we got home, I got his wheelchair to bring him inside, and at the steps, I had to pick him up and set him on each step.
I am SO going to be feeling this tomorrow.

Tomorrow morning, the CNA comes to help with his shower, then a social worker is coming by with power of attorney and advanced directives. I believe I will unload on him while he's here.
Maybe he will have suggestions.

I'm not sleeping worth a damn, even the meds I was given to help with it have stopped helping. Between the puppy cries at night and the cough Matt has had for the lasts couple of nights, I have been completely out of my head. I am almost ready to set up my spare bed in the family room so I can maybe get some sound rest.

Work benefits kick in tomorrow, so I'll get back to the doc soon, partly for my back which is long overdue for adjustments, and for my sleep.

I did get some 1 on 1 time with the radiation doc today and discussed the confusion and random thoughts and statements, he gets and MRI of the brain on Friday afternoon.
At least I will know if I am dealing with the narcotics or if it's met to the brain.
I told the doc, that I appreciated the action since the progression of his condition points to that area being a logical site for more cancer.
She asks, "are you a nurse" I said, No, I just read up on this A LOT!!!!

Going to try and finish the housework.
Daughter is coming over again tomorrow evening while I am working. Then I am off again on Friday.

Talk to you all soon. Thank you for all the hugs, prayers, and continued love and support. You all mean the world to me.

Thanks for the update, Christine - I'm glad you have people checking in with you and helping with Matt's care. I'm awed at you emotional and physical strength and all that you've taken the initiative to learn about Matt's care. It's no wonder the radiation doc asked if you were a nurse! You have probably already earned an "Honorary degree" in nursing by now! You do need some sleep, though to be able to keep going. If a spare bed in the family room helps, by all means go for it! Let the housework go or just do the parts that show. About the puppy, it's been a long time since I had a puppy, and I don't know how young yours is, but what we did at night was put our puppy in a box just big enough for him to fit into with holes cut so he could see out and he was fine all night, especially after the cat came over and took a look at what was making the noise and walked away. Maybe a soft stuffed animal for him to cuddle with would help? Let us know what happens with your doc and the back adjustments. Hope you can get some replenishing sleep for yourself soon.

Christine,
You are doing a marvelous job. What a wonderful caregiver you are. I am sure that somewhere deep in his soul he appreciates it. When I first had my surgery, our dog would come up to me and lay her head on my shoulder, like she knew where the problem was. It was very comforting. God bless you and stay as strong as you are able. I am glad that you have help during this rough time. Feel free to vent whenever you wish. We are all here for you.

Christine,

Hang in there girl, you are doing an amazing job. When our dogs were puppies and they would cry at night, I use to put a ticking clock next to them and that helped. I was told it sounds like their Mother's heartbeat. And I have to admit, my latest dog, when she was a puppy and would start to cry, I let her sleep with me. I know I'm bad...:) Sending prayers for you and Matt. Thanks for keeping us updated.

Hugs,

Shelley

I did get a TON of things accomplished around the house yesterday. SO many laundry loads, then took our bed apart to remove the frame. I'd convinced him to spend some time in the family room recliner while I got the linens changed. While he napped, I went to work making the area a little safer for his falls that are bound to happen. My son and I managed to get his wheelchair up the mercifully few steps to the main level of the house, and as soon as he entered the room he started cussing the changes. Well, he was sure singing a different tune when I mentioned it's a lot closer to the floor for when he dives for it head first!
We seem to be combatant a lot still. It sucks, but I will remember the better times once we get through this.
The social worker came today and we filled out medical POA and advanced directives today. It took a very long time to. While he started out cohesive, he quickly went downhill and started taking apart the poor mans binder wanting to know what "secret" forms he was REALLY signing, and talked about some person in England that was listening to everything... Oh dear!
He is sleeping now. I read some of the booklets that the hospice company left in their folder regarding end stages etc. he is already showing signs expected in those with less than a month remaining.
On one hand it's all so fast. On the other, it's been a very long three years.

Oh my goodness, Christine! - You are doing a super-awesome job of taking care of so many things! I hope you are able to get some sleep for yourself and take care of You. I'm glad you were able to re-arrange furniture to make things a little easier and lessen the chances of Matt's falling. Sending hugs your way and hope for some good, peaceful moments for you and Matt. (and the puppy, too!)

I understand what you are expressing in your last post. Know that there are many of us here who are with you in spirit and will be thinking of you and Matt each day, hoping for peace as much as possible. Take care. Karen

Good day everyone!
Everything is much the same here. He sleeps most of the time.
My job has been quite busy most of the time and doesn't give me time to think about things. I am glad I took the position!
My puppy sleeps at my feet during the later part of my shift. She's turning out to be a great choice as well, getting my teenager to help out more is my next big challenge!
Hope everyone has a wonderful day.

Christine

So glad to see this post. Breathe while you can!! Puppies can be wonderful comforters.
Good luck with the teen thing....battling that here too.
Thinking of you,
Kathy

what a rollercoaster this can all be...
tonight i am kept awake wondering how long i can put off either checking him into a facility for care, or hiring someone to sit with him when I cannot.
how do i possibly make that decision????

here's why i am considering it... three times today, I picked him up out of the floor where he had ended up after trying to use the urinal. last time, just a few moments ago, i got him back into bed, and he almost immediately rolled right back in the floor.
I am SO tired. So scared. I feel like if I wave the white flag of surrender that I will have failed miserably.
What is a wife to do? (rhetorical.... )

Christine - Please, please don't EVER feel like you have failed! Asking for help is not a sign of weakness. You have already shown so much strength - physical, emotional as well as in every other area of your care and love for Matt! If you do wave that white flag, it should be for YOU - to get whatever assistance will help you to survive. Whether you check Matt into a facility or get someone to sit with him while you cannot, it will make it possible for you to replenish yourself and keep your strength up so that you can be available for any peaceful moments that come by for you and Matt. . . . moments to just sit by him, touch his hand, or whisper "I love you". Even if he does not acknowledge or hear you, he will know it somewhere deep inside. Caregivers need care, too.

I agree with Anne-Marie. The last thing you are is a failure lady. You are a warrior and perhaps the battle is coming to an end. I haven't been through it and pray I won't, but I'm thinking it is down to the final decisions and that might include a facility where they can keep him safe. You can still go there and be with him when you aren't working, and maybe you can get the work done faster and be with him on a more quality basis if you aren't always having to play catch up. He will be clean, hydrated and protected and maybe able to communicate more clearly. He will fight you on it, but you have to do what you know is right for both of you, but especially for him. It sounds like he is beyond making rational decisions...that's why you got the directives. Have him go by Ambulance if he's really angry about it. Call them after a fall.
Praying for you sister. So sorry. Please know we are all here.
Love ya',
Kathy

Christine,
my sister in law had to make a similar decision with her dad, who has dementia and assorted physical issued, including falling. She felt like a failure at first, but is now coming to see that there is a limit to how much one person can do - and she went over that limit a while ago. I don't think you would call her a failure; I don't think you should call yourself a failure, either. Like my SIL, you are a wonderfully brave and caring person; but you are human, and we humans sometimes need some help. Best wishes for you both whatever your decision.
Maria

Christine being a caregiver is the hardest job their is. Having to wear so many hats all at the same time always with a smile on your face in front of the patient is no small feat. Its a hundred times more difficult when your patient is not co-operating all the time. Never EVER consider yourself anything less than an amazing, competent, loving caregiver with the patience of a saint. Im sure your task is much more than I would be able to handle. To me being the patient is the easy part. Caregivers are angels!!!

If you need help caring for Matt it certainly understandable. If the time has come for professionals to take over then know in your heart that you did every single thing possible to help him. Never look back and have any regrets. You have done an excellent job in a very difficult situation. Making this decision is not easy at all.

Please remember every single day to take some time for just you. Be good to yourself.

Always keeping you and Matt in my prayers.

I had a great visit with Matt's daughter tonight. She's really in denial though and isn't able to really embrace her Dad's condition and say all that needs said. I wish I knew how to help her.
The hospice mentioned pre-bereavement counseling, and I'll check to see if they can visit on the weekend.
She asks me how she can help, what she can "do". I don't know what to say. I feel uncomfortable asking for help with housekeeping, but I sure could use it. I guess I will have to get over my own feelings and thank God for the help he is sending us.

When Matt�s daughter asks how she can help, you could give her a list of several items, and let her pick what she is comfortable. This way, if she is not too keen on making breakfast, she might be happier doing laundry or taking the dog for a walk, etc. So when anyone asks how they can help, just show them your list and they will be happy they can do something, and know that it will really help.

Being in denial is very hard to let go of. It is difficult to recognize denial when you are in it. We want so much to hold on to even a shred of hope - for any sign of recovery. When a friend of mine died, I couldn�t believe that she would not survive and I was glad to see how thorough her daughter was in checking all the procedures and asking countless questions with the doctors about her mother�s care. Even when my friend � a nurse with extensive medical experience had comfortably accepted that she would soon be taking her relationship with God to the next level, and making her own final arrangements, the daughter was still holding on to hope and countermanding her mother�s wishes with the doctors.

I spent most of the time with my friend, just listening and talking about things we had in common (and hiding my own denial). And when she tearfully expressed her distress at how her daughter was resisting her mother's acceptance, I told her I thought she was just trying to make sure the doctors did everything they could to help her survive and had not forgotten anything and in her own way this was how she was expressing her love. After many conversations with doctors, one of them said to the daughter that - "Sometimes it is kinder to just let them go." That of course released a flood of tears and she ran out. But later, she began to accept and take care of all her Mother�s wishes and final arrangements. Everything went a lot smoother after that and my friend�s wishes were followed to the letter. She donated her body to Science � her family and many friends had a �celebration of life reunion� a few months later when it was Spring. Everyone came from near and far to gather and share the many experiences and remembrances. It was so very comforting to all of us.

Christine, I hope that you can find comfort for yourself and the help that you need. I�m sure that hospice will have some good helpful thoughts to share with you in the pre-bereavement counseling that you mentioned. Do keep us updated.

You know I will! (keep y'all updated) This outlet is a Godsend to me. Excellent idea with the "to do" list. I will definitely make one and allow her to make the choices of how to help that way.

Thanks!

Christine, I want you to know that I have been following your posts and have been praying for you. You are a strong woman and a great caregiver. I will continue to keep you and your family in my prayers.

Thank you for those prayers. I know sometimes that they are all that keeps us going.
I spoke to the hospice counselor today and put her in touch with matt's daughter. I offered to go with her, but suggested one on one session to figure out what she needs to say before getting Matt together with them.

I had a involuntary few days off work. I have an external ear inflammation in both ears that has made working (taking phone calls) impossible. I worked through it on Sunday, but then called in Monday for a doc visit. Started antibiotic drops, then yesterday every little movement of my head hurt. So, home again. Today is my regularly scheduled day off. We'll be out running errands and getting him to what I think is the final radiation appointment. Still waiting for results on the brain MRI too.
Will let y'all know what I find out.

I went outside with Daisy(puppy) a little while ago, and the moon is so bright and the temp was just right, I just sat on the front porch absorbing the serenity.

Learning each day to take what moments I can and enjoy them to the fullest.

Love, Hope, and Prayers to all of you,
Christine