My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Missing U,
I replied to your post in the experiences sectionas we were asked to do.

Lisa

Oh Joyce,

I am sorry you had such a difficult day and it had to bring all of your sadness back to the surface once again. My Dad feels the same as your Mom, his remains are just ashes, no need to do anything with them. He speaks of those damm ashes so often though, I would have to do something with them. As you said, not for him, but for US.
He has decided that he wants them buried here on our property, and somehow I take great comfort in that. I can still place a memorial stone, plant a tree, a bench, or do whatever I want to mark his special place, but at least I have a place to visit him when I want. You and your sister did what was necessary in your hearts and minds, and I think that helps with the healing process. As hard as it was on you today, you are one step further along in your grieving process. Now you do have a place to go to, sit and talk to her, and celebrate those Birthday’s, Mother’s days and so on.

I think your Mom must be a great deal like my Dad in many ways, and possibly the reason you and I have met one another on this forum. We can always be here to talk of the good and bad times we hold so dear in our hearts, and that keeps them alive. I am sure you have many many memories to share, as will I. I sometimes think that most people move on and stop talking about thier loved ones, but I somehow disagree. We know people die everyday, its part of life, but if we don’t talk about them, its as if they never existed.

As you can see, I can talk the good talk, but when I get to that point in time, I will feel no different than you do now. When I see Dad in good spirits with his pain under control, like today, I go back into denial mode. I know reality could slap me right in the face again tomorrow, but I like to hide in the denial stage. It lifts my spirits, so I can stay strong for him. I know the whole eating, drinking thing with Dad is not good, and thats what his body needs to do as part of the process, but as long as he is having some good days, I am staying positive.

As for the Doctor/Veterinarian topic, you hit it on the nail. Thats where I had an issue with my morals. I had heard for the last time, I am charging all I can, because thats what I went to school for, to make money. I actually worked with one Veterinarian that when I asked him why he became a Vet, he answered, so I could cut them apart and see how they work. He actually hated dogs and didn’t hide the fact. As far as I am concerned, if you lose your compassion for the animals and the owners, go get a job at Burger King. Human Doctor’s are no different. I see so many people becoming nurses, because the income is so good, but thats the only reason they are doing it. I have real issues with that, and I could write for days venting about that one, so I better stop.

I hope I have a good experience with Hospice too, but I know I will fire someone that I feel has one of those attitudes. This is my Dad, and he deserves the best care possible. They are on an as needed basis right now, with a weekly visit that is required.
They will have all his medication here by tomorrow, and offered to get anything else we needed. His blood pressure was good, which I find a little strange, since he has been really high, and not taking his meds for that all the time. The Nurse told us not to worry if he doesn’t take any of his other meds, lets just concentrate on the pain control and nausea issues. We are going to try the compazine in a gel form that gets put on his skin just like applying lotion, I had no idea that was even available. I am hoping that helps some. We are also going to try Decadron to decrease some inflammation and also help with his appetite. I guess we will see.

I hope that when you read this post, you are feeling better, and a little more at peace.

Take Care of yourself,
Lisa

Hello My Support Team,

Today was a hard day full of reality for me. I had told myself many times this day would come sooner than later. We met with the hospice nurse who will be managing Dad’s Case (I hate those words). I just can’t help but feel that in this day and age, at some point everyone is just a number. I guess its also because I do not want anyone else to care for my Dad, know one knows him like we do. He is a special kind of character that does not fit into the norm. Dad was in good spirits, joking as usual, and actually asked me to make him a pizza after the two hour visit. He signed all the paperwork and everything is in place. Seems as though he can stay awake much longer during the day when he is stimulated. I told him that I would have to get a cattle prod, get him out of bed, and then occupy his mind. He told me I was fired from caring for him. I just have to laugh.

Everything that was explained to us was nothing new to me. I worked for many years with people in a nursing home setting very similar to hospice. I was always there for my patients up until the very end. I was there to comfort them and hold thier hand as they took thier last breath. Most had no families, or families that just placed them and never looked back. I unlike most, had a special place in my heart to take the most difficult of patients that nobody wanted to give the time of day to.

One of my first lessons in caring for people was not to treat them any differently than I would want to be treated myself. I can remember a very young man who was diagnosed with end stage cirrhosis of the liver. I could not imagine dying of this disease at 34 years old. All I could think of was that he did this to himself, he was turned away by his family, and sent here to die. Why should I feel any differently than his own Mother and Sister, they believed this is what he gets, this is the consequence you pay when you abuse your body. He drank a case of beer daily along with a fifth of vodka for many years. How could you do that to yourself I kept asking myself as I read over his paperwork.

The day he was admitted I wanted nothing to do with him. I was angered and didn’t feel sorry for him. I helped admit him and get him set up in his room and comfortable.
I left at the end of my shift that day, and he was all I could think about. How afraid and alone he must be, to know your are dying, and your own family has turned you away. When I returned to work the following day, I had a much different outlook on things. I realized that this too was a disease. He could not help himself and this was the ultimate price he would have to pay. From that day on, I made a special place in my heart for him. I would spend my days off with him, I purchased a TV for him and would bring him in the daily newspaper and puzzles everyday. We became friends, and I was there for him. When he was in pain, I would fight to make certain that his pain was controlled and that he was comfortable. I can remember calling the Doctor’s and telling them he needed something else, the pain and ascites in his abdomen was getting increasingly worse. I was told, he is dying, there is nothing more we can do for him. I fought and I fought hard to make them understand that this was a human being, that did not deserve to suffer this way. There had to be something else.
I was told to take precautions, always gown up and wear gloves and a mask when going in to do anything with him. I could never have done that to him, that would just be isolating him even more. I knew that when his death was near he would begin to bleed from every orifice in his body, and there was a high risk of contracting hepatitis or HIV. I still could not bring myself to do this.

When the end was near, I was there with him, holding his hand and telling him how much he would be missed. He was indeed a special person, for he taught me the true meaning of caring. I was not wearing a yellow big bird gown(thats what I called Isolation gowns), a mask or gloves. I was in my street cloths, as it was my day off.
I helped to calm him, and when the time came I told him he could let go. I can only hope he knew how much I cared, and that he taught me a much needed lesson in life.
His family was called, and never came. I spent the next hour cleaning him and preparing his body for his journey home.

After that, I always took the time to take those specail cases that nobody wanted. I was finally injured on the job, caring for a very combative, abused elderly woman. She managed to tear my rotator cuff and all the tendons and ligaments in my shoulder. I required surgery to repair the damage, and was told that I could never lift more than 10lbs with my left arm, They had to remove 2 inches of bone and all the bursa sacks etc. I never returned to the field, and later went on to becoming a veterinary technician and hospital manager.

I left my job weeks before Dad was diagnosed, because of my morals. The veterinary field is changing , its all about the almighty dollar, than actually caring for all the creatures big and small. They say everything happens for a reason, and mine obviously was so that I could be here for and with Dad.

I believe that now, I will be looking to re-enter the medical field once again, so that I can take care of all those special people and thier families. I am actually going to persue something in the line of hospice care.

I am sorry, I guess I have babbled long enough. I am still very restless, and my parents are both sleeping now, and I can’t relax.

I will write again tomorrow.

Lisa

Hi Teresa,

Thanks for you heart felt wishes and comfort during this time. I know how special everyone is on this board and I know everyone has felt all the feelings and emotions I am feeling today. Although I cannot completely feel your pain, as I have never lost one of my children, I understand what the loss must be like from a Mother’s love. You carry that special bundle underneath your heart for 9 months and bring them into the world, nurture and love them unconditionally. Alan would be so proud of you for keeping him alive through helping other people deal with losses and all the sadness and emotion thats goes along with grieving.

Mom and I are comforting one another, although, we are each losing Dad in a different way. She is losing a husband and partner and I, a Father and my Hero. In the end our losses will be the same, because we both love him in our own special ways some the same, some very different. All in all, he is truly loved.

Love and Much Light to you Also,
Lisa

Hi Jules,

Thanks for all your understanding. I know you know how I feel as the loss of your Dad is so very recent. I too will have the strength you have to go on with him always in my heart and always in my mind. I have been down this road before with my biological Mother, but I was only 15 yrs old. I watched over her and took care of her while she suffered for over a year. She was a 6 year Breast Cancer survivor, and it came back and took over her body. Lung Cancer, Bone Cancer and then she finally slipped into a coma and passed away. I lost alot of my teenage years, and had to become a Mom for my brothers and sister and had to take charge of the household through her illness. All Mom ever wanted was to see us grow and become what we were destined to become. She never had that opportunity, nor was she here when we needed her the most in our lives. Dad has had that opportunity, and for that I am thankful, however I am still not ready to let him go.

I am taking the lead from Dad, thats why I have to be so strong. He like yours, doesn’t want the tears and the sadness around him, he cannot deal with that. So I have to put my suit of armour on and be a tough girl. As he would say, put on your tough girl pants and deal with it.

Thanks for being here for me, I know how incredibly hard it must be for you also.

Love Lisa