All Quiet on the Western Front

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Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/9/2007 7:01 PM (GMT -7)   

Dear Friends and fellow travelers,

It's all quiet on the western front. Gene is about the same; he has his good days and more bad days with overall slow decline. The word finding problems and personality changes have become the new baseline normal; some days I hardly notice them; not because they aren't there but that I'm getting used to his constant activity and changing things around when he is not in deep sleep. Gene goes until he collapses which is not good but I've been told to not interupt him unless he's in danger. The coughing, choking and aspiration are also regular occurances now.

I've decided Vitas Inovative Hospice, like Justice is blind. The nurse comes by and spends five minutes taking Gene's vitals and then the rest of her time is spent entering data on her computer or listening to my concerns. Vickie finally admited that she cannot believe Gene is still alive but feels there is nothing she can do for him so her time is better spent as admissions nurse. That's not really true, in March when Gene was on his death watch, Vicki didn't come by more frequently either. On Monday, the Medical Director Dr. Mandel is coming to check on Gene; he's supposed to come every two or three weeks but waited almost six weeks and then only called to schedule after I phoned Hospice on Friday to express concern over Gene's condition. They keep reminding me that most patients in hospice do not live as long as Gene and it's difficult for them to know what is coming next. Vickie explained that Gene's body is shutting down but won't venture a guess on the timeline. I requested the medical records almost six weeks ago but am still being told they are being gathered for me but first must be sent to corporate.

I had a very emotional and painful week following some deep insights from my therapy sessions. It brought up feelings of anger and grief that I've surpressed for so long and caused conflict with my desire to lay down my sword and shield. I seem to have a truce or cease fire today and the calmness is like bliss.

And the first illustration for my book is completed. I decided to express my anger through art and learned alot about myself in the process. I know more will follow.

Well, enough chatter. I hope everyone in Liver failure and Cancerland are having a peaceful weekend.

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 6/18/2007 5:59 AM (GMT -7)   
God bless you and Gene. You are an inspiration to us all Barb.

Take care.
Marg
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/19/2007 9:39 PM (GMT -7)   
Hello Barbara, after fighting for your husbands survival so long it's very hard to change gears. Believe me I know exactly what you're going through and have a very good idea about how your feeling. My husband too would go and go when he was feeling fairly decent until he almost collasped.
I used to get after him to take is easy but he felt that he had to do things while he felt up to it because most of the time he felt like doodoo. I held off bringing in hospice until I was losing it and was having trouble excepting that there was nothing more that we could do for him. 3 doctors had to tell me to bring in hospice before I did it. Even now I still question whether I got hospice involved too soon. But that's when I am having a bad day. On my good days I know that I did all that I could and that it was time for hospice. I don't think that I could have gotten through his illness and then his death had it not been for hospice. Especially our volunteer, she was the greatest. His nurse was nice but yes all she did was take his vitals and give him his injections. She mostly talked with me and made notes. I believe hospice is mostly for the family. When they get involved it means that there isn't anything left to do to make them better, they are there to make the patient as comfortable as possible and help their family get through it.
That was one of my pet peeves was that his doctors would not tell us in their opinion on how long he had. I had asked his cancer doctor 3 times before he finally said 3-6 months. I had already researched it on the internet and that's what I came up with as my best guess. But I didn't think he would make it that long and he didn't. Hang in there we are all praying for you and Gene. May God wrap you both in his loving arms to give you strength and love to get through this. Love Pink Grandma

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/20/2007 4:00 AM (GMT -7)   
Barb

My thoughts and prayers are with both you and your husband. May you continue to find the strength to move forward and get through these hard times.

Lucy

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/20/2007 6:55 AM (GMT -7)   
Barb, Im glad the therapy is helping you deal with your emotions through this, you need to focus on healing yourself...and keep yourself as strong as possible to deal with Gene. :hugs: I will be saying prayers for you both, as always.
Trish 
Moderator for Hepatitis Forum  
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!"
Life may not be the party we hoped for, but while we are here, we might as well dance:)


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/20/2007 7:02 PM (GMT -7)   
Dear Friends,
 
Thank you all for your kind words and support. This is not an easy road we travel and at times I need reminders that I'm not alone and that there is still hope and light at the end of the tunnel for me.
 
Today Jennifer, the nursing supervisor was covering for our regular hospice nurse who is on vacation this week. Yesterday after hours, when Jennifer called to discuss who would be coming today, I explained the problems I've been concerned about with Gene; she was surprised because the doctor had felt Gene was doing so well a week ago when he came to examine Gene. To my surprise, Doctor Mandel arrived five minutes before Jennifer came so we had two medical opinions. They were in agreement; Gene has declined, fluid is everywhere, there is increased shortness of breath and fatigue and he is definitely having word finding problems and a twenty pound weight gain. I was given the option of having them test to find out what is causing Gene's brain issues of just watch and see. But since there is no treatment he can tolerate, why know ahead of time what lies ahead. Do I sound like an ostrich with my head in the ground?
 
Anyway, they are treating the fluid buildup aggressively with more diuretics, Jennifer will call on Friday to see how Gene is responding and make another visit on Monday.
In contrast to Vickie the regular nurse, Jennifer is so much more thorough and knowledgeable. She examined and measured every inch of Gene's body and made astute observations. Most of all, she listens. Vickie on the other hand just tells me to write my concerns down and hold them until her next weekly visit. She doesn't see any reason to come more frequently or follow up with issues.
 
It's a little tricky having administration being the nurse. Every other time Jennifer has called or come to the house has been to resolve a serious conflict.

But Jennifer has always been fair and willing to override the medical director and pulled us out of the fire numerous times.
 
I will probably sleep better tonight knowing I'm not imagining Gene's symptoms; not exaggerating problems. I can't stop my beloved's decline. But for the moment, he's getting the symptom management hospice is supposed to provide
and Gene deserves.
 
Hugs to all,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/22/2007 6:23 PM (GMT -7)   
No, Barb, you don't sound like an ostrich with your head in the ground, you sound like a loving wife who is worried about the quality of life of her husband, yet trying to deal with the decline and emotions that go along with it. Is there any way they can assign a new nurse for Gene? someone who takes things more seriously, as Jennifer does? :hugs: dont be so hard on yourself, you know Gene better then anyone,and you should NOT be ignored,,,,,,,,
Trish 
Moderator for Hepatitis Forum  
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!"
Life may not be the party we hoped for, but while we are here, we might as well dance:)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/22/2007 9:24 PM (GMT -7)   
{{{{Barb}}}} Big hug for you.

Why would they not do paracentesis for the fluid retention? Is that considered an extraordinary measure? I had terrible swelling of abdomen, legs, and feet after surgery. Feet were so swollen, it hurt to walk. I asked about paracentesis and was told, "No." No explanation, but I was put on Lasix and potassium chloride. I am off both now, as my swelling has almost completely gone away and my potassium level was normal on Mon. I had blood taken again this morning, but received no call from the hepatologist about it, so I'm assuming it is still okay. I will see him again next Fri.

Is Gene's ammonia level too high? That seems to be what causes most liver patients' mental problems.

You are in my prayers,
Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/22/2007 10:52 PM (GMT -7)   
Dear Friends,
 
Thanks for your kind words again and excellent suggestions.
 
Gene lost nine pounds of fluid with the combination of Aldactone and Lasix. Unfortunately, the Lasix has made him weak due to electrolite imbalance so we were told not to give him anymore until after Jennifer comes on Monday to check him again. For some unknown reason, this time the majority of fluid was in Gene's hands, face and just distributed through his body. The amount of fluid in his stomach was not enough to cause breathing problems. Yet the doctor insisted it was still Portal Hypertension. Gene has not needed Paracinthesis since his initial diagnosis over four years ago. This is a procedure Hospice might not want to do but if needed we could take Gene to Kaiser for the care. If my memory serves me correctly TIPS is done for hospice patients.
 
Jennifer had a long conversation with me this afternoon and promised support hereafter for Gene and myself. She has requested permission to come regularly for the next few months to make sure Gene is okay. This is rather unheard of for top management to do hands on patient care. But Jennifer is good and hasn't found other nurses that can deal with Gene's unique issues to our satisfaction. Remember, I've gone through most of their staff previously.
 
On a humorous note, Jennifer said she is always telling her employees to watch out if any member of her family requires Hospice services. She jokingly said I would lose my reputation for being the most difficult family member in their history and then she complimented me for noticing subtle changes and being on top of Gene's needs.
 
Lastly, she promised they will be there for Gene and asked if I felt like they were addressing my support needs also. She told me the staff who no longer come chose not to return because they felt so terrible for having let me down and for not doing the right thing when I was depressed and not wanting to live.
I was told to request the TelaCare people to call Jennifer on her cell phone so she can get involved in evening or weekend emergency calls.
 
And she told me Gene's problems are serious but that he is not actively dying. While I didn't think that was the case, it was nice to know.
 
Connie, Gene's speech and cognitive issues are not related to high ammonia levels, his rotating antibiotics control ammonia. Gene actually has good hand coordination and no flapping when he extends his hands. With Gene, it's always something different than the typical liver or cancer patient. That's good and bad.
 
Have a great weekend everyone,
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/23/2007 2:37 PM (GMT -7)   
Barb, that's great that Jennifer is becoming more involved. Did she hazard a guess as to what is causing the speech and cognitive issues? Is there a possibility of a TIA (transient ischemic accident or "small stroke."?) While on Lasix and Aldactone, was Gene also receiving potassium? If not, that would cause the electrolyte imbalance (which I've just gone through.)

Hope you have a restful, emergency-free weekend!
Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/28/2007 11:49 AM (GMT -7)   
Dear Friends,
 
Gene is again in major decline but this time hospice is around us and finally doing what they need to. There seems to be an agreement that this may be Gene's liver finally being overwhelmed but we are stopping the diuretics in case they are the problem. It's in God's hands now.
 
I'm holding myself together. Whatever lies ahead, I know I will get through it without becoming totally depressed or totally dependent on others. It is comforting knowing all of you are there embracing me.
 
Prayers are welcomed,
Barb
 
Connie, Gene took Lasix only once a week ago and has been on Aldactone by itself. It's possible his potassium levels are too high without the balance of Lasix. He has not wanted bananas, avocados or oranges which are high potassium. It was hoped the cognitive and speech changes were from the generalized edema but things did not improve after the first day when he lost almost ten pounds of fluid.
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/28/2007 2:37 PM (GMT -7)   
My prayers are with you, Barb. It's good to know that Hospice/Jennifer will be there for both you and Gene. And of course, we are always here for you.

Hugs,
Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/29/2007 7:44 AM (GMT -7)   
 
 
Gene took a major decline over night; his body is shutting down. He is almost too week to hold his head up and I have to arrange the covers around him. Speech is very difficult and so soft I can barely understand him. I can see the direction he is heading. But he is peaceful and comfortable as am I.
 
Barb

                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/29/2007 10:37 AM (GMT -7)   
dear barb,
my prayers are with you and gene, as long as he is comfortable thats all thats counts and he knows his family is around him. take care.

annette

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/30/2007 1:25 PM (GMT -7)   
Barb, I will be praying for you to stay strong, and Gene to do things his way: with peace and your love surrounding him.
Trish 
Moderator for Hepatitis Forum  
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!"
Life may not be the party we hoped for, but while we are here, we might as well dance:)


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 6/30/2007 5:30 PM (GMT -7)   

My Friends,

I don't know what the Lord has in store for Gene. Perhaps it is to give us all hope. Perhaps he is too contrary and the Lord is not ready for him to stir things up. Or maybe it is to teach me that all things are possible. Whatever the reason, Miracle-boy Gene turned the corner once again and stabilized. Gene is weak but recovering. He is having his first meal in days.

Yesterday, Dr. Mandel said with anyone else he would call it the end but since Gene has rebounded so many times we would just have to wait and see. Now that Gene's speech has improved enough for him to say what he feels, he told Jennifer he was certain he was dying yesterday. I was also. I don't think there was anyone who really expected another miracle. There was a sense of relief that this three plus year long battle was winding down. That hospice finally was there for us and pulled out all the stops with skill and compassion and understanding. That I was accepting and able to let my beloved Gene go and continue my life alone.

I don't now what else to say. Whatever time my Gene and I have together will not be wasted. I again can feel his tender arms around me. We can laugh and cry and make more precious memories. And my book is getting thicker all the time. Whether it's days, weeks or months, thy will be done.

Thank you all for being there; your words brought tears and a sense of peace.


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/30/2007 7:00 PM (GMT -7)   
Barb, Miracle Boy Gene has done it again, hasn't he?  I do believe this may be his final rally before passing on.  I've read about and seen many instances of people seemingly near death who rally and seem so much better...only to die days or weeks later.  Let us pray that he goes peacefully, and that God gives you the strength to get through all that lies ahead.
 
Hugs,
Connie
 
 

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 7/4/2007 10:01 AM (GMT -7)   
 
 
Yesterday was frustrating beyond words and I will spare everyone the details. Doctor Mandel finally made his visit at six in the evening. He took one look at me and pulled me into his arms so I could have a good cry. He said Gene has rallied some. But then this morning, Vickie came and hadn't seen Gene in one week. She was astonished at his decline, his inability to find words, his overall weakness, his fatigue and his lack of humor. Vickie didn't see him last Friday so didn't know how close to death he was; from her perspective he had declined significantly.
 
Vickie said to think in terms of weeks for Gene. She said she would be surprised if he made it to Labor Day. This is taking into account Gene's amazing ability to come back again and again. And honestly, as weak and confused as he is, my prayers are for a peaceful death, sooner rather than later.
 
Thy will be done,
Barb

                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/4/2007 1:07 PM (GMT -7)   
Barb, I pray that our Lord will bring you peace with whatever is to come. I am finally finding it 2-1/2 months after my beloved husband died. My thoughts and prayers will be with both of you. Pink Grandma
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