Topic: Hospice coming to our home

Hi everyone,

As many of you know Mom is in the hospital with quite a few things going on.  The drs discussed with her that they think that hosice coming to our home would be a good idea.  The social worker from hospice and another nurse have come in to talk to us today.  When her dr mentioned hospice to us a month or so ago I wasn't crazy about the idea because when I hear the word hospice it made me think that death was coming soon.  Talking to the hospice people has helped me realize that hospice is there to help your quality of life and they have many people "graduate" from hospice and not need their services anymore.  I can see that we need the extra help coming in.  I am certainly not a nurse, and don't know all of the symptoms to watch for.  I will be thankful to have someone come in to help us keep her comfortable.  I am going into this knowing that we need that help and hoping that mom will also "graduate" from hospice in a while and be back on her feet and well again.

Amy

Re: Hospice coming to our home

Amy....It will be much better for your Mom to be in her own surroundings. You have made a wise decision, in my mind.  Hospice workers will be able to help you to make your Mom comfortable. 
All my love
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice coming to our home

Amy, I am so glad that you now have this option. It will relieve so much for you and your mother physically and mentally. Good luckk with it and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice coming to our home

Well, here I am again a few days later, but wow have we been through some serious changes.  I have been so reluctant to type this hoping that each day would get better, but things aren't gettting better.  Mom has gone down hill so quickly.  She was released from the hospital on Saturday, August 30th and she was better for a few days.  Earlier this week she was doing much better.  The last few days have been awful.  She is turning yellow.  The nurse came today and had to insert a catheter.  Mom had not urinated since Friday.  How do these things progress so quickly?  I don't even know what it is that is progressing!  The last MRI early in August showed that things in the abdomen were stable, the only new thing it showed was the tumor on the spine.  Something is obviously going on though.  The hospice nurse and the oncologist aren't surprised by her jaundice.  She has an apt with her oncologist on Tuesday, but I am not sure that she is going to be able to go.  She is so weak and confused.  It absolutely breaks my heart to typs this.  I am so confused about what is really going on. 
Please pray for us.
Amy

Re: Hospice coming to our home

Dear Amy, I am truly sorry for what you and your Mom are going through. You will definitely be in my prayers.

Tess

Re: Hospice coming to our home

Dearest Amy, I too am so sorry you are having to travel this road. This is a monstrous ferocious beast and we just don't know enough about it. The important thing is to get your mom comfortable. Perhaps her confusion is from the jaundice. Did they not suggest she go in to the hospital now? What I don't understand is if they all know she is jaundiced why are they not putting a stint in and if she already has one maybe it moved? I am so hoping you will know more Tuesday and that it all settles down for you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

7 (edited by marions Mon, 07 Sep 2009 22:16:46)

Re: Hospice coming to our home

Dear Amy.....I am so sorry to hear about your Mom.  I think that it is time for you to receive some straight answers.  If the hospice nurse and the oncologist are not surprised about your Mom's jaundice then they should share their thoughts with you.  Amy, will your husband, or another family member be with you when speaking to the physician? 
I am sending all my love your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice coming to our home

Dear Amy,

I too am sorry for what you and your family are going through.  I have to agree. You deserve some answers & insight into what is happening & what to expect.  I feel I did not get that either and wish I had been told more & known what was happening and what to expect.   It all just went so fast.  I am hoping that you can get some answers soon.  As Lainy mentioned, I think for your Mom the most important thing right now is her comfort & keeping here as pain free as possible. I will keep you all in my thoughts & prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice coming to our home

Dear Amy
             yes it is good to get some straight talking.I think your mom might be gravely ill,Amy and try to rally all your supports and tell your mom everything you need to.If she rallies a little as sometimes people do well thats good but I think prepare for the worst and see how it goes.   kindest regards     Janet

Re: Hospice coming to our home

Amy,
Sending you warm thoughts and cyber hugs. I agree with the others that the drs. and nurses need to give you some answers and that making your mom comfortable is a top priority.

We have seen several times on this board that confusion is often the result of high ammonia levels. You might want to check that out.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hospice coming to our home

Thank you for all of your responses!

Could it be I am not getting a lot of answers because they don't really know what is going on?  I know that tumors in the liver/bile duct can't be picked up on ct scans and so on.  Could it be that her most recent radiation hurt her liver?  Mom has been having a lot of pain on her right side for months now, maybe that was a sign that we didn't catch.  Mom doesn't want to go to the oncologist tomorrow, she doesn't feel up to it.  Also, I am not sure that physically she can make it.  If we don't go, I guess that I could call the oncologist and talk to her about some more of my questions.  I don't think that Mom could go through any sort of procedure.  She also doesn't want to.  I am not sure how much the hospice nurse knows about cc.  I think that we have the experts here on this board!  Thankfully they started her on oxycontin and she isn't in pain.  It seemed to do the trick.  She will have to start morphine in a a couple of weeks because hospice said they don't pay for oxycontin.  The price went up 900% or something stupid like that.  So, thankfully she is quite comfortable.  Now that I think back she has been very uncomfortable for a few months, but we just kept hoping that the next day would be better.  I just don't want her to die and me have all of these unanswered questions, but is that selfish of me to think that way?  Do I really need to be worried about what "exactly" is going on, or should I just be spending all of my energy focusing on spending this time with Mom?  I keep thinking that this came on so quickly, but maybe it really didn't.  Let me just say it now, not that I haven't said it a million times already... I HATE cancer!

Thanks for helping me,
Amy

Re: Hospice coming to our home

Dear Amy,  thinking of you and your family.  Sending you love and hugs and praying for your strength.  We are all with you right now, holding you up.

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Hospice coming to our home

Dear Amy we have all been gently telling you that you are not receiving straight answers. There, I said it out loud. The biggest question to ask the Oncologist is how familiar he is with CC. That is the biggest. Then just say you need to know exactly what is going on and if he is unsure you want a second opinion immediately. I just hate to say this but at the rate it has been going your mom is slipping and you will have not known anything. Is there someone else who can help you with this so that you don't have to face it alone? Make a list of questions starting with the experience of the doctor, take someone close to you and go for it head on.  IF you would like to talk then send me a personal e mail and I will give you my phone number, or email me with yours. Maybe it would help more if you talked it out. Sending strong thoughts your way. You are not alone we are all here but you are the one who has to deal with the Oncologist. You are a good daughter and I know you want to get your mother the best care you can.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

14 (edited by amylea Mon, 07 Sep 2009 10:20:02)

Re: Hospice coming to our home

Lainy,

Mom's oncologist has quite a few patients with cc.  The surgeon who initially did Mom's surgery recommended her.  The surgeon was from John Hopkins, and dealt with cc a lot.  We feel quite sure about her experience and knowledge about cc.  She just knows that Mom doesn't want to have any more aggressive treatment.  She doesn't want chemo or radiation.  Both of them have had worse side effects for her than the cancer itself.  She recommended hospice to us quite a while ago, since this disease is so unpredictable. 

I wish that I had been more knowledgable about the whole process with cancer before this started, so that I would know what to watch for.  Although I think cancer has a mind of its own.  I know that everyone is different.

When Mom was released from the hospital last week the head oncologist for the cancer ward told me that with her symptoms and disease progression that she probably only has a few weeks left.  I have been so hesitant to write that, because I don't want to believe it.  Although now as I see her deteoriating, I believe that he was right.  I asked them not to tell Mom though because I didn't want to break her spirit.  I was too emotional at the time to ask him a lot of questions, because he caught me off guard.  I wish that I would have been a little more on my toes, but it is too late now.

I guess that my main conern is wondering if it is really important for me to get answers now?  We know that Mom is probably at the end of her battle with this horrible disease.  Am I just being selfish wanting her to go the dr so that I can get answers?  Even if there is something, she won't want to do treatment for it. 

Whether we go see the oncologist tomorrow or I call her, I do hope to get a little help from her.

Amy

Re: Hospice coming to our home

Amy,
Typically, when hospice is involved, they have access to all the medical records from the referring doctor, and they will answer all the questions from all the family in terms you can understand. If you don't understand, just keep telling them so, and they will keep trying. At least, that was the case for both of my parents. Are you by any chance working with Vista Home Care? They worked with my Mom (Carolyn Klotz) in Johnson County, IN, which isn't far from you. Wish I knew what else to say that might help, but you already know that this is unpredictable stuff. At least, you have my sympathy and prayers.
Louise

Re: Hospice coming to our home

Louise,  I have heard about Vista Home Care, and they were one of our choices.  We went with Clarian Hospice.  My grandma was with them a few years ago, and they were fantastic for her.  Johnson County is VERY close to us.  What a small world.  I didn't realize that you were from Indiana.  Her regular nurse is coming tomorrow, I will talk to her also.

Thanks, Amy

Re: Hospice coming to our home

Now I understand, Amy.  You have done all you could, do not look back as no one has been able to figure out this crazy cancer. Everything, everyone is so different how would anyone know exactly what to do? Most of us live on our gut feelings, not very scientific is it? You did the best anyone could and the most important thing is to be at your mother's side as you have been. Sometimes this CC monster shows no mercy. Make her as comfortable as you can and share good memories with her. If mom is at the end of her battle I believe the hospice nurse can explain things from that point to you. Not sure what would be accomplished by going to the doctor with questions now but you need to do what ever it takes to make you comfortable. How can anyone be selfish who has been a care giver to a CC patient? Unheard of. You have choices tomorrow. Take mom or not. Go yourself or not. I believe we know when our final days are ahead and perhaps mom feels this also and just wants to let it be. Again, you have to do what you are comfortable doing and listen to your heart and gut and any decision you make will be the right one.
P.S. I used to tell my kids when they had a big decision to make to make a list of pros and cons and see which one out weighs the other. It actually works.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice coming to our home

Dear Amy,

Lainy's advice is what I also would say to you.  I think at this point, your mother's wishes and keeping her as comfortable & pain free as possilble is what is most important.  That and spending as much quality time with her as you can.  This cancer is so unpredictable and no one knows what it will do next.  All you can do is the best you can do with the circumstances you are given.  Then know that you have done your best.  There is no right or wrong. Only what you feel in your heart.  Take care Amy and know that we are all here for you to help, comfort & support you during this stress filled time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospice coming to our home

Hi everyone,

Me again.  Have had a very difficulte last few days, as many of you understand.  Mom has gone down so quickly.  She is so jaundice.  Her eyes are glowing and leaking.  He is sleeping probably 23.5 hours of the day.  The other 30 minutes a day are when people (like me) are talking to her.  She has no muscle strength and can't walk at all.  Thank God that Gary is able to work from home so that he can help me.  My brothers have really stepped up to the plate.  One of my brothers has been spending the nights with us.  It is so comforting to have him here.  The nurse came Tuesday and said that Mom only has a few hours/days.  I spend most of my time sitting in a chair by her bed watching her breathing wondering which one will be the last.  I am thankful that she isn't uncomfortable.  She is aggitated, but not uncomfortable.  As I think back, I see symptoms of this coming on, but man it sure seems like this stage came on so quickly.  I know how hard she wanted to hold on to see Max, but that just isn't possible.  Maddy is really struggling.  She seems so afraid of Mom, which I totally understand.  When I watch her sleeping her face looks like she is already gone.  My heart is breaking.  Of course I know that there is no turning back from this, but I wonder how I will feel when she is gone.  Some part of my brain thinks, she is still alive, could she possibly come back?  I KNOW that isn't possible, and I know that sounds crazy, but I just can't believe that she will be gone.  My mom and I have never lived apart.  My heart already aches because she is gone.

I called the oncologist and talked with her and talked with the hospice nurse about many of my questions.  They were very helpful.  They both were able to reassure me that unfortuantly this is the path that cancer takes sometimes, and that I am doing and have done all that I could to help her.  The nurse asked me if I had ever thought about being a nurse because I have that special touch that has helped mom.  While I told her that she was crazy, and that I could never be a nurse it did make me feel better wink.

I am so thankful for all of you here.  My heart breaks for all of us that we are taking this journey together, but it sure is comforting to know that you all understand.

Please keep us in your prayers.  Amy

Re: Hospice coming to our home

What a nice thing for the nurse to say. And that shows you that you helped ease your mom along this awful journey. Our hearts and prayers are going out to you and you family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospice coming to our home

Dearest Amy....You are not alone in this.  We are with you...all the way.
Much love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospice coming to our home

Im thinking of you Amy,and knowing how you feel.It becomes a bit of a surreal sort of time and we get bursts of adrenalin to get us through.You are going so well holding it all together and I am glad you have good,supportive nurses and family with you
                                        Janet

Re: Hospice coming to our home

Oh, sweet Amy,  I am sending you hugs and prayers for your strength.  You are such a good, loving daughter.  Your mother must be so proud to know you are with her during these long, intense hours. 

May you find some peace during this most sacred time, as you prepare your beloved mom for her next journey.

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Hospice coming to our home

Amy,
You are being so strong. We are all here for you on this path. Please never feel alone when you have so many ears to listen and shoulders to lean on.

I hope that your mother continues down her path free from pain and with her family around her.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hospice coming to our home

Amy....I am so sorry.  Know that we are all here.  Sitting, understanding, all extending a cyber arm to wrap around you...
said a prayer for your Mom.

Marjo