All Quiet on the Western Front

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

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

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.

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,,,,,,,,

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

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.

 

 

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

Barb, I will be praying for you to stay strong, and Gene to do things his way: with peace and your love surrounding him.

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

 

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