Sleepless, you remain in my heart and thoughts. I am sending you a big ((( hug ))).
I wish there were more that we could do here, but we're thinking of you.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Sending you comforting thoughts from here as well.... hugs
I wish peace and comfort for you and your family.
Thanks all...It means the world to me knowing your all there, during this hard time and if there is anybody who understands it's you all thank you from the bottom of my heart!
Mom made it to her primary Doc with great difficulty through the stairs. Doc said with all her swelling and purplish coloring on the bottom of her feet was do to the decadron and the blister on her one heal is do to resting her feet on the ottomen? He also adjusted her sugar pills and added one more while on decadron. He also want's blood work since he hasn't seen any of her blood work in a year.
Sorry Dad and I are not Doc's by were just not buying it, but it is what it is...(We thought circulation)
Dad finally called "Hospice" yup Hospice of NJ, today and they are coming out tomorrow morning...Dad asked them not to say that they are hospice to just keep it as visiting nurse...so we'll see how this goes...please God let all it go well!
Dad as well put a call into the Onc thinking maybe were calling the wrong Doc since primary is out of a different hospital and doesn't know whats been going on and Onc does. Well the receptionist of Onc called Dad back and said you have 2 options either take more pain meds or go to the E.R. so that's why we continued with primary, which that's why Mom always say why bother where did we get?
I am very grateful to be going back to there house to sit with Mom tomorrow so Dad could tackle the crazy world and I have some more time with her and it's not in the hospital like I thought that's where it was going :)) She will continue to just stare at all her pictures from her big chair or couch and I will just stare at her and hopefully not well up how sad this all is and or that I am grateful to be able to do this and have this time.
I hope your day today with your mom is a good one.
Sleepless, I'm so happy your Dad finally allowed Hospice to get involved. Please keep us updated on how that goes. I think he will end up being glad he called. Still sending those hugs... ((( Sleepless ))).
We'll Hospice came today...it was suppose to be hush so everyday was not to be a rainy day for Mom, (she has lost to many people in her life and hospice was a part of it, so she can't hear the word hospice) we'll the door rings and Dad answers it" Hi I'm hospice of NJ" Mom and I heard it clear as day. He comes up the stares and introduces himself and Dad and the gentleman go into the kitchen as I sit with Mom..it was just too sad...The look..she says I want a pink metallic couffin (I wanted to die in everyway her so sad and pink coffin) and I want so and so at my repass to play music he promised he would etc...so I tried to explain further how they are to help you, Dad and I etc it doesn't mean your going soon...He leaves, I leave as well shortly after. The nurse comes out later from hospice now and says who she is very clearly (it's like wow, what happened is it something that we asked is such a bizarre request"don't let Mom know your hospice")? I need to talk to Dad tomorrow to see how that all went down, I do know from my brother who popped by later in the day and said Mom was weepie and that the nurse was having pain meds shipped over from another pharmacy that was several towns away (I hope it's just that emergency kit that I hear about, because Mom has so much pain meds at home it's crazy) She also knew exactly the very, very large blister on her left heal she said from what I was told was friction from the bed, you need I believe Dad said real brief a heal cover...I don't understand she is hardly in bed, but Dad said she was very confident. So I will get more information from them and continue to pray that all goes well and will continue Dad called I'm so happy, but why am I little sad too?
I'm sorry it's been such a tough course. I hope that the hospice folks do end up making it easier for both your mother and father from this point forward. I do suspect that they were ordering the comfort pack, which is really quite standard to provide immediately for people who are getting enrolled with hospice services.
Very frustrating that the hospice people should have ignored your request to be discreet. But maybe they are under instructions to identify themselves to the patient? Sometimes people are so crass it is almost funny in a black sort of way. I once had a junior doctor leave the consulting room, yelling to his colleague as he went, "She has brain mets, you know!" The entire corridor could hear.
I am not surprised you feel sad - it is very hard. But I do think it is the kindest and most caring thing you could have done for your mother - and for your father, despite his reluctance. Hopefully things will be a bit easier now for you all.
I agree with everything cs said.
I'm very hopeful that hospice will help your mom get comfortable and help the rest of the family feel she's getting the care she needs without having to travel.
cs, you knew you had brain mets at the time, right? I hope that's not the way you found out.
Best of luck sleepless with hospice,
Mom's update,we are very confused, why am I not surprised...we had a nurse from hospice wrap Mom's heal up (had a very large blister, they say from her bead friction from rubbing) and they showed Dad how to wrap/salve and gave him gloves. Than yesterday a new nurse came (Dad said was a little sharp) and that take that wrap off she shouldn't have that wrap on etc...she measured the blister as well and going to have sent some heal cover. The other heal has now developed a blister as well. How do we know who's right wrap or no wrap? She also said it's very common Mom has thrush so she ordered so swish and swallow med and tweaking some of her meds. Why tweak meds I am so confused...
Poor Mom no longer really wants to eat or drink as much, because than she has to go to the restroom and that is such a mission in it's self that there's a lot of accidents that occur. We started yest. with undergarments, needless to say how Mom was about that!
The lady we had that was at the house for early morning til I get there so Dad could get to work had quit on Christmas night and Dad is in shambles now, Mom see's whats going on and just wants to go now, she says shes ready for the big bed!
Did we hire the wrong hospice company, there is so much confusion, not sure why we are not more at ease yet and I am not comfortable with now who this nurse is coming in and changing meds, mad at heals also telling us do not let her take a step or two to the restroom...Mom complains her bottom hurts from sitting so much (afraid she will get ulcers).
Going there this morning, hopefully will get some answers.
Dear sleepless, I wish I could give you some advise that would help you know what to do with the hospice team. They are giving some conflicting and confusing directions. If you can't get satisfactory answers from the people coming to the house perhaps call the managing nurse or doctor. There may be good answers to the changes. If you have options perhaps you can call to at least talk to another hospice organization.
I hope your mom gets comfortable soon,
I'm afraid these questions are a little too specific for us to address. I think any time you have a team of people and a very complex situation, you are likely to have differences of opinion. I don't think that you should lose all confidence in them based on this. Your mother's situation is very hard, with many issues to manage, and I don't think it will be completely smooth and easy no matter who is involved. I think you may find that perhaps one person on the hospice team doesn't work well with your family and/or the other people on the same team, and there may be room to request that they no longer come by. Often the hospice has enough people working with them that they can accommodate a substitution, which might lead to a more harmonious working relationship.
Sleepless, I used to work with quadriplegics (people who are paralyzed) and they are at particular risk for these types of sores. We used to use heel protectors whenever these folks were in bed.
You might want to ask the Hospice nurses if they can get some of these for your mom. Also, if you don't already have and egg crate mattress, ask them about that too. The two most common sites for pressure ulcers are the sacrum (butt bone) and the heels, so I can imagine she is feeling some discomfort. There are gel filled cushions you can get for her to sit on. And she needs to shift her weight regularly, just switch from butt cheek to butt about every half hour or so when she is awake.
As far as the Hospice people, I'm sure they understand when there is a personality conflict. Ask for a different nurse. And I personally would call a supervisor to get that done (be nice) and also tell them about the two different approaches to the heel sores.
If that doesn't work, you could always do what Laya did. Fire them, and get a different Hospice organization in there. I'm sorry she is feeling so depressed. Maybe the changes in her meds will help with that.
You're always in my thoughts,
Hi Sleepless - -
I'm so sorry about what your Mom is going through. It is just terrible - - there is no sugar-coating it. . .And, like Debra said - - if you are not comfortable with the hospice team that you have, you always can switch.
You all remain in my thoughts,
Thank you all...Debra thanks for the hyperlink so I know what they look like for tomorrow when the aid comes and is suppose to bring something than us wrapping xerofrom / gauze. Also great info on the bed and the sacrum I really appreciate it!!
Dr. West I agree, Mom's case is complicated that's what almost every Doctor has said especially her Onc who we dealt with regularly, she is not a predictable case and has left her almost always stumped!
The thrush med is nystatin and the other med that Dad had no idea what it was for, I found out was neuroton for neuropathy (which Dad is no longer going to give, she doesn't have, Dad states she rubbed her blister and Mom jumped and said you have neuropathy so that's why the meds).
We love the aid....so very sweet, and you could tell she likes her job, she does it well! The nurse on the other hand, well...Dad and I will give her a couple of days to work somethings out if not Dad and I have already discussed we will request for a different nurse (she is the case manager nurse).
The bed is suppose to be delivered tomorrow and have to discuss about a bed lift that the social worker (she also was amazing as well as the aid) brought to my attention today that may be a big help from bed to transfer chair?
I just breathed a big sigh of relief for all of you! It sounds like things are settling down and I can envision your mom propped up on her new bed enjoying all the new comforts of home.
Hoping that tomorrow is a better day, or this afternoon is a better moment,
Sleepless, I will echo what Janine has said. I'm so happy you finally have the Hospice folks in there. I think it will be a big relief for both you and your parents. Please keep us posted.
Hi all...It's been a while since I have been on and have a lot of catching up to do and I apologize for that...I have been very over whelmed with Mom and by the time I get home I usually don't have energy to get on the computer for long periods of time.
Mom's charge Nurse must have had a bad couple of days, because she has stepped up to the plate and has been wonderful..
Mom had stayed in bed all day Thurs. and had no energy to get out nor much appetite...so we just had fun in her room...had no idea how much of a shoe fetish she has..now mind you she still has her humor...I hold up a pair of shoes (to keep or throw out) she says "Say yes to that dress or NO to that dress"...we looked at old, old pictures etc...
We'll a different tune was sung for Fri. she was unresponsive, staring at the ceiling, wouldn't or couldn't open her mouth to take any pill's nor to even be able to suck through a straw.
I put a call into the Nurse who had me have her squeeze my hands to see if it was a stroke and thankfully wasn't...was told to give an hour of rest time and call her back in an hour...she was a bit better...but was a big decline from Thurs....clearly the brain mets have grown. It was a very scary day for us...the aid when she came later said she's staring at the ceiling, because she see's the angels...than later on when my brother came to visit (she's only on fentyl patch, advil in the day and percocet prn at night) she started reaching for things in the air and became very vocal...it was awful!!
Called the nurse and she told us to crush her meds up and put in yogurt/applesauce etc....she slept peacefully for awhile.
Yesterday she was a bit better where she ate a bit more and was able to suck through a straw and was able take her meds The nurse came and explained to me the kit they send out and how yest. when she was doing this I would have given this and this probably wouldn't have happened.
We have my Brother's Birthday Celebration today and are doing a soprano lunch, I hope Mom is having a good day today and that the grand kids don't get too much under Mom's skin...
We also had an agency come out yest. to get more help for Dad and I...some wknd help and early morning help. I unfortunately didn't get to speak with her, was with Mom/Nurse so don't know details really. My brother did explain that they do have available an aid, however she is a smoker and on the bigger size...she is very good, but most people have a problem with that?!
Since I would be spending time with her as well I would have a problem with the residual cigg. smell on her (since I get all stuffed up when I am around that for periods of time) so I hope to be able to get more info today on all of this.
I hope you, your mum and your family got some joy from the celebrations and it wasn't too tiring. Take care, we are thinking of you
Thank you for checking in Sleepless. . .And, please remember to take care of yourself as well.
Good to hear from you. I hope hospice has worked out as we planned?
And I hope everyone has a good day today with the party.
Do you plan on giving the smoker a try?
Hello friends...It's been awhile since I have been on. I have missed you all and apologize for not being there for you all during your days when they were down and dark like you have for me!
I am still very consumed with Mom, Dad as you know has hired an aid for early morning care, I am there all day, 5 days a week and hospice comes 2 hours a afternoon during the week only. We have been through 3 private aids, but now I think we have a match who shows up on time, is nice to Mom and and could most times understand her. (Mom does lose it sometimes when she calls her mommy or mama...she's from Columbia). I have told you awhile back how the hospice nurse has a attitude now and again, well she has opened up to me and told me your mother reminds me so much of mine...she had Lung cancer as well and it now has gone to the brain also is on hospice (her mom has 11years older)
My poor Mom is in a bad state of depression...cries all the time, thankfully not in pain. The hospice nurse measures her arm every other week and she's losing cm's. Since a couple of times a week we need to give advil while on the fentynl patch (yup advil crazy right, but it works) hospice now has us gradually giving her methadone and elavil today so we could take off the patch soon and elavil will help with the depression and the break though of discomfort. My Dad and I were reluctant to give meth, it feels like something that is sold on the street and not for a cancer patient, but we had no choice the nurse was very adamant and was no longer going to fill the patch after 2 weeks.
For whatever reason she is now as of last week sleeping through the night, not moaning or calling my Dad that she has to relieve herself...
We were all worried with Mom waking Dad up all night and going to work (he has his own business big commercial land clearing) that something was going to happen to him.
It's just so awful to watch her like this in bed!
One of the days I will never forget in October, when Dad asked the Onc. on his cell how much time do we have and that is a question we never asked...she said a couple of weeks...as much as I love my mother and have done everything I possibly could and still do...I wish Onc. was right on her prediction, this is slow and torturous to her and her family to go through this...it's just wrong in so many ways...
My Brother has asked me why is it okay that if your family Dog is very sick, you could take them out of pain, but when your loved one is very sick you have to watch them suffer...
Hugs to all.
I'm sorry for what you're facing. I'm at least relieved that you and your family have more support now.
Hi Sleepless, thanks for checking in with us. I've been wondering how y'all were. It sounds like things are settling down a bit, not that there any easier on you or your dad but it does sound like your mom may be doing better. Methadone is a drug an opiate or opiate substitute often given to those trying to kick an opiate habit. But it's a good pain med for those who will spend the rest of their life on it. I have a friend who has had extreme pain problems for most of our lives. She moved through all the drugs we've heard about before agreeing to methadone. It's working very well for her. It's not the "meth" we here about as a street drug or meth lab. That's something completely different. Methadone is sold illegally but it is mostly gotten it's bad rap because of the legal "methadone clinics" set up to distribute the drug to former addicts on a daily basis.
It sounds like it's working very well for your mom.
I'm sorry for her horrible illness and think often about you both,
Thank you Janine...I feel somewhat relieved about the meth! I was going to put a call into the Onc. even though I think your no longer suppose to now that your with hospice and I haven't spoken to her since Oct/Nov on her advice on Meth...I just don't want Mom to look like a zombie like she did the first day we started a half dose that caused hospice to say lets cut give her a 1/4 for a week and now tomorrow I have to up it.
Mom has had a lot of of miss happs through this journey and it's so very hard to let my guard down now and say they know what there doing and let them do what they know what is right for Mom!
Especially knowing she's only on 50mg fetynl patch and advil when needed to now just go to this because she was in pain one day and I found that the patch was falling off...it's just hard to swallow?!
Thanks again for your constant support :)
Hi Sleepless. . .
I wish your Mom (and the rest of you) all the best...and I'm exhausted for you! You are an amazing daughter. . .Never forget it!
I am very sad to let you all know Mom is now one of our Angels...she past last Saturday the 2nd at 4:40am at home. Our 2 year and 2 Month journey has consumed my life, Mom's and Dad's that now I don't know what I am going to do I had a sched. all day everyday what time to give meds, what time an aid was coming, write everything down of anything she did or ate. Now I drive over to there house and my heart is so heavy for me for my Dad...never saw him like this, nor did I ever expect him to react this way....he just cries all the time (he's a man's man too that never shed a tear) they dated at 11/12 yr old had me at 16 yr old and continued on to have 2 boys, been married for 45 years that's something you don't really hear anymore a love like that! The last time Mom was able to really put a couple of words together was the week before she past and I will never forget it "I don't know what Dad's going to do" than just stared at the walls or ceiling :(
I want to read to you one of the prayer cards that I picked out, my brother also chose to read this at the church instead of the liturgy...
If Roses Grow in Heaven
If Roses grow in Heaven Lord, please pick up a bunch for me.
Place them in my mother's arms and tell her they're from me.
Tell her that I love her and miss her, and when she turns to smile,
place a kiss upon her cheek and hold her for awhile.
Because remembering her is easy, I do it every day,
but there's an ache within my heart that will never go away.
We were told in July to call Hospice than again in Oct. and at that call Onc. said she has a couple of weeks. I truly believe like the Doc's have told us if it wasn't my companionship all day, home care, being a big part of her journey and of course Mom being one tough Lady her time should have been cut in half.
I just want to thank you from the bottom of my heart for being my crutch for the short time that I found you all!
I'm so sorry for your's and your family's loss. You and your Dad took such good care of your Mom. Peace be with you.
I too am very sorry for the loss of your mother. You have been such a devoted daughter, and shown her so much love and care.
There are no words to describe how sorry I am to read of your Mom's passing, Sleepless. I hope that you and the rest of your Mom's loved ones find peace and comfort with her memories as time goes by. I know it's hard because I'm living it myself. But, you are and have been an amazing daughter and I know that you and the rest of your family will get better. . .
I am so sorry. . .
With a heavy heart,
Sleepless, How heartbreaking. Today marks 4 years since my mom passed away and I've had some tearful moments in the last couple of days.
You know what an important person you've been in your mom's life these last couple of years. You were a good daughter to her and I know she treasured that.
I will keep you in my thoughts.
Sleepless, My heart Goes out to You and your Dad! I'm an Orphan myself and not a day goes by that I don't miss them! Someone on the Inspire site was talking about feeling,sending or smelling familiar perfumes of a loved one who passed! I wish that were something I would expierience. Would be so Comforting! God Bless You and Your Dad!
I'm very sorry to hear of your Mom's passing. Your description of how your care for your Mom became the center of your daily life resonates so well with me. Especially in the last weeks of my wife's life, I did the same as you - creating daily schedules for meds and other procedures (a new schedule every day since some drugs were not taken daily), preparing the few foods she could handle and trying to feed her those foods, and so on. When she passed, not only did I miss her presence, but I felt a loss of purpose since my sole motivation was caring for her.
All I can tell you is that it is a feeling that will improve in time. Seek the comfort of family and friends to help you find comfort and peace, and focus your attention on your father, encouraging others to do so as well. The same loving care you provided to your mother will now be what helps him through his time of grief.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
I am very sorry for your loss. I wish you and your dad, along with the rest of your family, strength in the days to come. May you all find peace and comfort in your memories of your mom.
My condolences to you and your family - You and your father have had such a bumpy road the past few months. I hope you can gain comfort from knowing your Mom no longer suffers. The heartbreaks is excruciating, of course, and to watch your Dad suffer must be unbearable. Caring for him and resuming your life will slowly fill in the days and keep you busy at least, while the dust settles.
You've been extraordinary, and I'm sure your Mom is bragging to other angels right now about how well you cared for her. Thanks for sharing your journey with us. It couldn't have been easy. We'll always be here for you, and hope you check in from time to time. I hope you get some rest and do something nice for yourself to alleviate your grief. Hang in there!
I'm so sorry. You've worked through so much. Please know we're thinking of you and your family.
My sincere condolences to all of you.
So sad to hear. You have my thoughts and sympathy
Sleepless, I'm so sorry.
Sleepless-----real sad to read of your Mom's passing. I followed your journey with your parents. Those over 2 years have gone so fast---just remember you were a rock for your Mom---and now your Dad needs you. Hope time lessens your emptiness. Take care,
Oh my. I'm sorry I wasn't able to see this discussion thread before.
It is sad to hear of her passing and the loss felt by you and especially your Dad. You've done a great job of giving and getting for her the best care possible. I'm sure, like her oncologist said, it made a difference to her health and especially to her as a person.
Her struggle with the cancer is gone now, at peace. I imagine it'll be difficult to adjusting to having lost her presence, . . . hard for you, especially for your Dad, and for the rest of the family. I hope you and they will soon be able to start healing from the battles you've been fighting with her.
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)