Hey Jan, I'll bring the graham crackers and Hershey bars as I feel like smore's at that campfire!
My mom does not feel like eating today. My sister and her family go home tonight and I have a feeling that now that my mom has met her greatgrandson that she may just decided to give up and go fast
She was alone with my brother in law for awhile yesterday and opened up to him about how she does not want to go on with life like it has been these past few months. She was always a very active lady so I guess this having no energy to do anything is much harder on her then any of us really knew.
We had to stop at her vets the other day after I took her to the dentist so they could see how the infection was doing. And my mom says to all the girls at the front desk. " I am so sorry but I don't think I can bake any cookies for you this year" Broke my heart. For years she has alway made fancy decorated sugar cookies at easter, halloween and christmas.Her Vets office who she has done business with for over 30 years has always been one of the groups she gives them too. The girls all looked at me like they wanted to cry as everyone there adores her so much. I feel like I am slowly taking her on her goodbye rounds. She is getting so frail and weak that soon she will not be going out at all.
I will have her doctor fill out the medical certification paper I need to apply for a leave at work, as I think I will be taking that soon. I have a feeling we may not make Christmas either
My best to you and Bud. When are we meeting at this campfire? JanMarie
Stan is napping so here I am...I have been thinking about all of you so much and hoping and praying your weekend is going well. I think of Bud trying to force food in order to gain his strength and make it to Christmas. I felt for you Jan when I read your posting and having to tell Bud the truth. It is amazing what the mind can do...so he could easliy hang on and spend the Holidays with you and his family! I can relate so much to the grouchy side of them and heck, can you blame them, but as a caregiver it is a challenge. We love them so much and want to help them in everyway, but at times I feel so helpless, yet they feel so frustrated. I think of JanMarie having to go forward with taking time off work to spend time with her mom...just a tough time with the Holidays approaching. I am wondering how Renea and her husband are doing, how Becky and Ron are doing and think of Karen and then there is Pat who is an inspiration to all. I know there are many more out there and know I don't have room to list all the names, but know you are in my prayers. Enjoy your weekend and time with the family. Off to the grocery store while Stan sleeps.
Good morning, early early morning....been up since 3:15 when Bud woke up unable to catch his breath despite the oxygen. I am going to ask our hospice nurse if we can increase him to 3-3.5 liters. For a long time, he could not go back to sleep. He showed signs of agitation, we prayed for a long time. He is scared to go sleep, afraid he will pass and not be here for me any longer. He an I have been having long talks and even his children have -- talking about being OK afterwards, that we are strong and will stick together and get through it, but for him to rest easy and when he is ready, to let go and go ride horses in heaven. We are planning on celebrating Christmas week after next. And, he, the kids and his grandson are going to have a family portrait done. The Crow bloodline.
He has been eating better. Yesterday he ate three slices of French toast, Boost, and some coffee for breakfast. Skipped lunch as his lack of physical activity keeps him from developing an appetite. But after a showdown with his youngest brother last night (hate to say it, but my BIL had it coming.....), his appetite took hold and ended up eating half of a decent size pork chop, a small ear of corn and a Dole fruit cup.
Constipation is still a huge problem. No BM since 8 days ago. All of the prune juice and stool softners and suppositories have not made a dent. Today we will probably have to cross the enema bridge. I know he is SOOOOO looking forward to THAT <<snort>> !! Poor guy.
Hospice is going to send a social worker over today and a spiritual counselor tomorrow. I think it's a good thing since I need to find a means to release the frustration that is quickly building inside of me. Kim, you said it so well, the sense of helplessness and hopelessness are overwhelming. Bud rarely lets me out of sight, I am his safety blanket. Which keeps me from being able to do any work and if I don't get some work done soon, despite FMLA, I will not be able to draw a paycheck. Which, does not help our situation. So, what is one to do! He has taken to not watching TV, but rather to just sit on the couch mostly talking about how awful he feels and how scared he is. The hospice nurse warned me that agitation towards the end is common. One thing I did not know. For a few days the nurse asked me what the color of his urine was. I said yellow. Up until Thu nite, and then it was amber. When I shared this with the nurse, I asked if it meant that he has a urinary tract infection (although no outward symptoms of that are present). He said no, that it is a hallmark of the body beginning to shut down. He said, (oh my God) 2-3 weeks. 2-3 weeks!!!! I can't even begin to digest that, but I know that it's the awful reality of seeing my wonderful husband's life begging to wind down. I thought all of my tears had dried up, but all I can do is cry and cry. I have told his kids, and his brothers and sister. I need to call my son since he has shown no interest in calling us to find out if we are OK, or if we need any help. He needs to make peace with Bud.
I think about all of you all the time, praying for each of you. Finding some comfort being here, sharing our lives. I too think about Karen and wondering how she's doing. How Renea is coping with her husband, and Linda, and you Kim. How JanMarie is juggling so much, and traveling back and forth so much, sometimes very tired I'm sure. I pray for your safety JanMarie.
I would tell you exactly when and where our camp-out would be, but sadly, I know I would get edited by the moderator...posting rules you know
I had to go up to the camp yesterday to pick up Bud's Invacare bench for the bathtub. He was using it for other purposes and was left up there anticipating a return. That was Sept 3rd, his birthday. When I set foot in our camper, my heart just did this awful, painful squeeze, fully realzing that he probably will not be able to go again.
I better get going, today promises to be a long day, and the rain matches my own blue mood.
Take care all. Love and hugs from So. Indiana....
I am also going to ask for home care, as he has not had a bath since a week ago Saturday. He is very weak, and the lack of desire for cleanliness is very much unlike him. I have tried for a several days to entice him into a short bath, where I do all of the work and he can just sit there and relax. If I cannot accomplish that today, I'll ask for back-up. Maybe the home care people can get him nice and cleaned up and that would lift his spirits, I'm sure.
I too have been awake since the wee hours of the morning, the anxiety of what I will hear the doctor say this afternoon was not allowing me to sleep.
My heart breaks for you and Bud if that is possible as it already feels so broken by what is going on here that there may not be much else to break.
My mom ate nothing. zippo yesterday. We did get her to drink a small glass of water but that was it. She is no doubt severly dehydrated which is making her feel even worse.She looks so pale and weak that unless this is a problem the doctor can fix with some IV fluids or blood I think she may only last a week or two unless she starts eating or drinking. I think all that fight she had in her is gone . When her neighbor had breast cancer last year she just quit eating and drinking and died fast and I wonder if my mom is seeing that as a fast way out of this?
My sister and her family left yesterday and I am suppose to go home tonight and need to as I need to get my Family leave papers turned in and pick up the california leave papers( last year California passed a law that will give me 6 weeks of pay for a family leave.. I think it uses up my PTO and then the state starts kicking in like with disability). Anyway I feel so alone now that they are gone as my poor dad is so afraid of the future without my mom and as for my brother I am rather ticked off with him.
My brother and his family live one house away from my parents. My parents took care of the 3 boys when they were little right up until the time they were old enough to be home alone and even then they tended to spend alot of the after school time with my mom. My parents missed out on alot because they stayed home to do this. I would invite them up for a week and get the "We can't as we have to watch the boys". God forbid that my brother and his wife would actually have to pay some one to watch those boys for a week! Anyway I feel they should be doing more to help out my parents but all they have done is sent over dinner a few times and drive her for that last CT. Then this weekend I think we saw my brother for maybe 15 minutes. My sister is a bit hurt as living out of state she never sees him yet he could not be bothered to find time to spend here this weekend, let's see Friday night he and his wife had to go see a movie, Saturday night was the boys football game ( which is a good excuse) Sunday they went to church then over to some friends house to pray with them as the friend had cancer , did not get home until after 9 Pm and by then my sister and her family were gone. But even so they did not even bother to come over and see how my mom was. He and his wife seem to go out of their way for friends,yet when his own mother and sisters could use him there are other things he seems to feel are more important. I do not get it as we had always been close and have had no fights. I need to vent that as it has been driving me nuts.
I had better jump in the shower and start packing the box of kleenex to take to the doctors! I will post again later this afternoon and let you know what he says. I hope Buds day goes better then his night for both of you.
I am going to find that campfire when this is all over and stuff myself with smores! JanMarie
You have been on my mind all day wondering how things went with Bud. It is good you are having the talks as painful as they can be. (remember them with my dad, but with my father-in-law never had the chance since he went into coma) Wow, he did eat quite well yesterday. (amazing what a little talk can do for them!) Hope the constipation is better and did not have to use the enema...ugh! How do you like your social worker they sent over today? With my dad and FIL they were wonderful. Yes, understand the safety blanket and so hard to do everything on your own including work! Stan has been on such a short fuse the last several days that he has not wanted to talk that much. (concerns me and had me in tears today...he was mean...not aggressive but just short tempered) Yes, it is true what they say about the urine...that happened with my dad and FIL too....amber color. I am so sorry Jan as I thought Bud was doing so well several weeks ago and bam...so it is just a reminder how dreadful and aggressive this disease is to one's body! Good idea to contact your son as if he does not make peace that could really cause your son some guilt in years to come, not to mention how nice it would be for Bud. I feel just horrible inside for you Jan...feel terrible and count my blessings that Stan has not gotten that bad yet, but see him slipping even though his blood work was better today...not sure what was up with that, but we will take it! (his BUN counts and Creantine were fine....whew as in the past 2 months they were getting high) I pray you can get thru this tough time Jan and be strong. You really worry me right now...please when you have time keep us updated on Bud. There must be some sunshine coming your way Jan...I just knew when and what! God Bless You....
Thinking of you too today and wondering what the doctor told your mom. Not a good sign she ate nothing yesterday and amazing what the mind can do to your body. I might have shared this in the past, but here goes again...my Grandpa had been bedridden for about 1 1/2 years and it was a tough battle caring for him, but my SIL was a saint to him...anyway, everyday my Grandma would complain...how could Grandpa get himself in this situation...this is not the way to die! I will not do this to you! I will die of a heart attack and make it easy on all of you...of course we would tell Grandma we do not get to pick how we die. My Grandpa died on Dec. 8th and I get a phone call on Dec. 28th that Grandma was rushed to the ER but will be okay...mild heart attack (keep in mind clean, clean bill of health before this episode) I kept getting a phone call every 2 hours saying that things are looking a little bit worse and this went on for 12 hours until I got the final call at 9:15pm that Grandma died of a heart attack. The doctor could not explain it...he said she should have lived and come out of it, but he said she was fighting to die. (he did not know the situation about her husband dying 20 days earlier and her determination not to be a burden to the family) Anyway, it reminds me of your mom if infact she is stopping to eat so it will be the end. Oh, now I have myself sad about my grandparents...they were like parents to me...spent every summer with them...the entire summer...never with our parents. (they shipped us away) I also understand about family members who just are not there...sad but they are out there. (it may or may not ever affect them once the other person has passed away) I continue to pray for you and your mom (dad too). Get some rest as I know you were up early as Jan was too....
Oh God JM....your brother sounds just like my son. There to PRAY for others, but what about charity beginning at home...HUH???? I left my son a message tonight, as he is out recruiting others for the National Guard. Oh, yeah....he looks so sharp in the uniform, but what he inclines to do I think shames the National Guard. As long his his girlfriend's family gets taken care of, screw us.... sorry...bad language. But, true. I have been scouting all evening for a new home for us, and the rain and driving winds have made this a real challenge. But I think I made progress. His kids came up to sit with him, but since he looses sense of time, he thought it had been all afternoon, when in fact only 2 hrs....Anyway, he wanted me to come home quickly to give me my anniversary present....it's a sapphyre and diamond cross on white gold. Matches my wedding band set. I saw it one time several months ago, and since I thought he was not watching, did not pay the least bit of attention. Thanks to our oldest daughter (step) who did the final leg-work he was able to pay it off out of layaway and gave it to me tonight. He was so worried he would pass without being able to give it to me. I saw it and cried and cried...seems like I do a lot of that lately. I grip the cross in my hand and know my Bud is on that cross, and I just lift him up, praying for rest, peace, and ease from pain. I told him....."well, I am going to give you a new home for our anniversary....can you top that??"....kiddingly...
and...you know, this cross topped that. I just feel its weight on my collarbone and think of the wonderful man that understood, set it aside, and went in to pay for it as he could. God, thank you for my Bud.
JanMarie, I hold you and your mom up. It sure sounds like she is in the same place as my Bud. God love them, and God help us.
We will figure out a way to cross the states and go camping...you just wait and see.....
love, hugs, prayers, and all that good rot....LOL...cry.....
Ahem...KIM, you are already invited to our little camping adventure...just you wait. God will find a way for us to meet. Your Stan is such a fighter, and his cancer the aggressive kind, I cannot believe he is doing as well as he is except for the excellent care he gets from one certain person. You have not mentioned your infamous MIL lately, has she settled down and allowing herself to help you in your time of need? Just wondering honey.....how did your son's game go on Fri? Did they win?
Fall is settling in into the Midwest. The days are getting shorter, colder, and wetter. Yet, when I come here, the warmth is always just a key stroke away. I just treasure you all.....
I have only been on this board for a few weeks, but I have been catching up on you and Bud (along with others on here). My heart is breaking for you. I will keep you and Bud and your entire family in my prayers. You are such a trooper.
I will remember how well you were able to cope when/if the time comes for my dad's end of his suffering. He has been having pain in his lungs and increased shortness of breath. His mental state is very poor right now. (depressed) He started his Tarceva yesterday.
Good luck with your house hunting and know that there are lots of prayers being sent up for you and Bud.
Jan, I love your anniversary story.Bud getting you that cross and wanting you to hurry home so he could give it to you really touched my heart . Thanks for sharing! (((((( Big cyber Hugs )))))_ to you and Bud. JanMarie
What a beautiful gesture your husband did and how special that will be in your heart forever! What a wonderful man he is and always thinking of you even though he is so ill. Thanks for sharing...it made me cry. What a special moment.
I hope Bud had a good day and was able to enjoy some quality.
Prayers as always,
Hi guys...things were tough tough tough today. Read JanMarie's reply...
we went to see Dr Stephens and just I knew in my heart of hearts, there was nothing more to do for Bud. No ace up the sleeve, no trick in the hat...nothing. His body is just shot. Tired, sick, exhausted, weak, limp....
Even two of the nurses came out as we were leaving and hugged him...telling him they would see him in Heaven one day....it just make me grip the handles on the wheelchair that much harder, trying so hard to keep my composure...watching some in the waiting room observing this moment and seeing them wiping tears...
As I wheeled him out the door, I just had to stop, stoop down and kiss the back of his neck and remind him this meant NO MORE NEEDLES!!!!!!!!!!! So, the plan is to get him strong enough to go camping weeeknd after next and hopefully see him through Thanksgiving....I know our time is so limited.
Folks, for those of you just coming here.....
Take time tonight to thank God for having more time with your loved one, to be able to participate in this last part of their earthly journey. To share in the love and memories that will keep you going in the months and years to come. They will need your strenght, your focus, your ability to keep them looking up when everything else is pointing down. There are so many that don't have that extra time. I read a story while Bud was in the hospital of these three ladies who lost their young husbands in the 9/11 crash...they got together and formed a widow's club of sorts and through their shared grief, they found friendship and healing. Let's all hope that this place called HealthBoards can in some small way come near doing for us what their club did for them.
Love, peace, healing, prayers and lots and lots of hugs...
Could not sleep well as I have so many things racing in my mind. I have been thinking about Bud and you and then JanMarie since this week seems to be so tough on all of you. I do hope Bud is hanging in there and will be strong enough for the camping trip! Honestly, his children sound like they will be a strong support system for you when Bud is not around. (Oh, I don't even like typing that!)
Thanks for asking about the lovely MIL....we have changed our visiting times with her. She use to come over right smack in the middle of our dinner time on Sunday and the boys have school in the morning so very disrupting so now we have switched it to meeting at a rest. for about an hour to get Stan out of the house and it works much better and she is so happy to see him out and about. We have cancelled several times, but we did manage to do it on Sunday...honestly,it does her more good than Stan, but the world always revovled around her anyway and Stan realizes it. Stan barely spoke on Sunday at lunch, but at least he got out and ate. When she comes to the house she is depressing and brings us all down so I came up with the meeting idea a couple of months ago! (finally my mind was working properly!)
As far as the game...it was just terrible, but Andrew did a good job. But...we were tied up to the 3rd qrt and then we fell apart and then it started a downpour and thunder and lightening close by so they stopped the game with 2 minutes still left in the 3rd and end of game and we lost and went home sopping wet! We kept Stan dry, but myself and our youngest were WET! We did not want Stan to get too wet so gave him the huge umbrella. (keep in mind Stan got after me for even bringing the big umbrella so had to laugh when the buckets of water started coming down) You are so sweet for asking and remembering since that is the highlight of Stan's week...watching Andrew play.
My brother and nephew are coming in from Vegas this weekend to visit Stan. My brother has not been able to deal with it, but finally made time to come. I am extremely close to him, but he has a hard time with emotions.
I pray for you and Bud and all the others on the posting board and pray there will be no such thing as cancer one day...the thought of our children going thru this is terrible....let their be a medical breakthru!
I think things are getting worse for Stan...I am worried as it is 8:45am and he is still sleeping and even slept thru the kids getting ready for school. I keep checking on him, but he is out! He has a doctor appt @ 11:30 for his sugar level...it is off so they are going to make him give more injections...ouch!
Thinking of you Jan and embracing you and all the others out there.
Sometimes I feel like we are in suspended animation. It's only been 3 days since the appt with the oncologist, and I cannot believe how rapidly Bud's condition is deteriorating. Yet, it has felt like weeks. He pretty much sleeps most of the time, eats very little, some days more some days less. His 2 week constipation episode finally came to an end yesterday and that did bring him some relief. He is just on Oxycontin now and a little bit of Adavan (spelling?) for when he wakes up agitated and unable to relax enough to catch his breath. He can barely walk now, and not at all without assistance. His weight is down another 5 lbs. But the worst part is the weird stuff he talks about. The nurses and doctor think it's his oxygen level that drops and causes this. They say the meds aren't responsible because he has been on the same stuff and actually taking even a little bit less, and his body has adjusted to it. His speech is very slow and he mumbles a lot or slurs his words. They checked him for signs of a stroke, but passed the test. I fear he is losing touch with reality. He has lost all sense of time. A couple of days ago, he woke up startled because he was sure someone had shoved him in the shoulder. No one there but me and Bugs. This happened 3 different time in the same night. Two nights ago, he swore a bear was chasing him and that there were white bugs flying around. Yesterday morning he asked me if we were a white or black family. I gently asked him to take a good luck at me. He said "you're white now"....and not sure what brought that on. He said someone was chasing him with a stick. Then during the night tonight, he got up and crashed into the recliner. That's when I woke up and went to help him up. He sleeps on the couch all of the time now, and I on the love-seat. He said the bear woke him up. Bear again, hmmm? Then he said, did you not see the Indian brave that was standing by the TV? He said the brave shoved him in the shoulder and told him to wake up and come to him. That's when he got up and fell into the recliner. He is very very sure of what he sees and hears. I wonder if any of you experienced this with your loved one towards the end. He is on liquid oxygen now and works well for him, so I don't understand the low oxygen thing.....After he finally got settled down again and with the help of his Adavan (he can take up to 2 mg, but usually only needs about half of that and only during the middle of the night when he wakes up with these really weird things going on). I worry about him trying to get up and hurting himself while I am still asleep and unable to hear him until afterwards. Needless to say, I am unable to sleep tonight...so here I am.
Kim, sorry to hear about Andrew's game but glad to hear that Stan was able to go with you. I wish I could get Bud to go do things still, but when I do take him out even if for a drive, he just hangs his head like he is mostly asleep, and it will have been hours since his pain meds, so by all reality, he should be alert. Next weekend is the planned camping trip. Because of his oxygen situation, he cannot go for very long without it (an hour tops) and the large tanks that we have here at home are not travel friendly so hospice is going to see if we can get the smaller machine back that we traded in this week just for the weekend. This machine makes it's own oxygen for the air. We have electricity up there and a backup generator if necessary. I worry about being able to get him to the bathroom since we do not have sewage hooked up yet and the bath-house is a good ways away. Then there is the issue of being able to get him up and down those little steps of the camper, and even bigger challenge of where he can lay while we are outside by the campfire. He needs to be at least safely away so that he doesn't compromise his safety around the oxygen, yet near enough to be part of the gang. I'm thinking about bringing the queen size blow up mattress and set it up a few feet away from everything. His machine would go behind that so it would be at least a good 8 to 10 feet from the campfire. Then he could lay down when he needs to and take breaks and do his oxygen. Then come back for a little bit. So, maybe we can find a middle ground compromise that will allow him to have one last hurrah.....if he can't go, it will break his heart and I think totally accelerate things.
I hope everyone here has a good weekend, or at least as good as can be expected. Our trees are changing colors and it is so pretty.
Sounds like all of you: Jan, JanMarie and Kim need a ((BIG HUG))...haven't been on in a while, but I am truely sorry to hear about the tough times you guys are dealing with. You guys are in my prayers and thoughts.
I did not see your posting until yesterday and I sat down and typed a long reply only to have my computer freeze! I will have to keep this shorter than my original posting. You and Bud have been in my thoughts so much and pray he is having a good week. It is heartbreaking reading how he is slipping a little each day. Now what I wanted to share with you was the state of his mind...my FIL had the same problem, but his was due to steroids. He would tell me to watch out for the lady behind me and stuff like that so it reminds me of what you say Bud is experiencing. Is he on decadron or any type of steroids? Also, another thought....when my dad was very ill before he died in Feb. he became the same way, but his was caused due to his calcium levels being extremely elevated. Anyway, hope that helps.
The weekend you have planned sounds wonderful. I hope you all enjoy yourselves and Bud can enjoy. I will be thinking about you.
Stan is not having a good week at all and not sure if this 4th line chemo is a wise thing to be doing. I am not a quitter, but it is very hard on Stan. I doubt he will go to Andrew's game tomorrow night. I cannot even speak to him much when he is like this since he is on the steroids it alters who he is. They lowered his dose, but he is better, but wants nothing to do with anything and does not walk to speak to you, only on his terms. It is tough to deal with and hoping by this weekend he will be better.
You take care of yourself and Bud and I pray you have a very beautiful weekend with memories that will be forever special and close to your heart. (even though it seems Bud has already given you many special memories always nice to make more)