Palliative care : Questions from Sue and answers from our metastatic liver cancer experience.
Sue’s palliative care questions
Sue left this comment at do you have a liver cancer story?
God Bless You for what you are trying to do.
I am taking care of my 81-year-old mother who up until last year looked and behaved like a 50-year-old. It is so hard to see her in the state that she is in now. She is so weak and does not want to eat anything. I beg her to eat because of all the meds she is taking but she does not want anything. She does drink a lot of water though. She does not want to go to palliative care and so I am doing the best that I can at home. It is so scary and sad.
How do I know when the end is approaching? I would appreciate any help you can provide.
Metastatic liver cancer answers
As you would have noticed: Sue doesn’t mention if her mother has cancer or not. But she does stress :
I am doing the best that I can at home. It is so scary and sad.
Again, although this blog is about metastatic liver cancer, we don’t look from the doctor’s point of view, but from the eyes of the caregiver, be it Sue, or you…
Do what you can for your cancer loved one : it’s the best gift for him/her and yourself
It is so hard to see her in the state that she is in now. This is a feeling we felt as well…
When you are doing the best you can taking care of a palliative cancer patient, you do have to tell yourself that you cannot do more than you are doing.
You give your loved one the live in the best way you can, although we all know that a "normal person’s day looks more full". Father knew that he was given people "more work than they should" although he never asked for that.
Compared to putting a person in a cold hospital environment, far away from the people and place they love the most: taking care of a person at home increases the quality of life of the person you are taking care of BIG TIME!
It always helps when people have talked about this before they get sick, but most likely you don’t have that luxury now. We for sure didn’t but we did know father, we did know what he loved, so we tried to give that as much as possible. That’s all you can do Sue…
She doesn’t want to eat…
Give food in small portions. Father’s belly was a few times bigger than during the times when he didn’t have his metastatic liver cancer. Just imagine you have no more space in your belly: how would you feel adding food to it?
We did give "astronaut drinks" : you can buy them in the local pharmacy: they are very nutritious and father loved them. Having cancer, being tired… most likely everything that’s makes life more easy is welcome.
We also gave father’s favorite chocolate desserts: yes, he had liver cancer, but at that moment the cancer is much more dangerous than a piece of chocolate. But in the long: expect that the next day will most likely be a bit less of everything you experienced today… So appetite became less, his eating became less and his body absorbing the food became less.
She is so weak…
Sometimes father couldn’t stand up out of his bed. We we always afraid father would fall because he looked so weak. Yet he managed to climb the stairs a few times still…
On the other hand, our uncle who had kidney cancer just fell next to his chair when trying to stand up from it, and in the process broke his hand and hip…
So again: you do the best you can and also hope for the best (uncle was monitored by his dear wife 24/7 as well, but 24 hours minus going to the toilet… and after coming back: broken hip and broken hand…)
In an ideal world there are more than 1 care-takers around 24/7. We had about 3 family-members doing that, which is a different story than when you are on your own like Sue.
She does drink a lot of water…
That’s good news, father didn’t drink much…
If there is too much water in the body, it will start accumulating from bottom to top (feet become bigger…).
If there is not enough water, then the skin will become dry. Pull your skin up and see how it bounces back. Then do it with the person you care about: if the skin is not bouncing back, it’s an indication that the person is getting dehydrated.
Again: when talking about terminal cancer: all will get worse every day, so you have to do a difficult balancing act between:
- enough water,
- enough food, not too much pain and
- enough stool…
And these are just the primary needs of life, we didn’t talk quality of life yet…
How do I know the end is approaching?
First you take the liver cancer prognosis from your doctors as a guidance. Then you make sure like we did: get palliative nurses in every day and make sure the house-doctor comes in every once in a while. Like that they can tell you following their experience "if the end is approaching or not…".
Yet they are not eager to give you that information because nobody can predict the future. It’s a give and take between the care-givers and at the end stage of father’s metastatic liver cancer: the nurses did put their attention to mother: telling her to take better care of herself. Meaning: the end was near "when mother was almost finished and father was as well"…
In medical terms: the liver cancer patient will get jaundice (yellow eyes). Now I one day thought father’s eyes were yellow so I asked the doctor. And the doctor said: you father’s eyes are as normal as possible… In other words: if you don’t have the medical experience, even yellow eyes are not easy to spot.
According to our doctor the last days are approaching when the cancer patient becomes itchy all over… We never experienced this either: father passed away in his sleep…
When you are very close to the person, you feel when the end is near though: the last day father took all the blankets from his bed (it is said in the common believe that that’s a sign of a person that is changing this life for the next). But more compelling were his words to mom: "if I had to do it all over again, I would have done it with you for sure"… Very clear words from a very weak person…
That night his breathing became weaker and the next day there was no more breathing…
Myself I had the feeling that father was "getting worse" suddenly, so I told all my brothers and sisters: if you do want to come still: better come soonest. They all came that week-end: father must have seen that we all managed well without him and the next week he passed this life for a life without pain…
Do you have a liver cancer story?
If you have a cancer story, please share it with us in a comment: it’s more easy to say: you have cancer than it is to deal with cancer… But we see that people that lived with a loved one having cancer do have similar questions, anger, feelings…
So share your story : it will help others and you will find out yourself that you are not alone…
@Steve
Thanks for sharing Steve.
Doctors didn’t warn us that father’s mind would be decreasing day after day…
We featured your story and added our comments at Metastatic liver cancer mind games.
Hugs!
My father in law has metastatic liver cancer. He is 86. He’s been battling kidney cancer for more than three years, but when the cancer reached the liver, we all knew the end was in sight.
Today, he is still alive, though he often indicates quite clearly he’s not completely happy with that. He told me once, “If I’d know it would take this long, I would have done it differently.” He’s always been a very robust person, in control, willing and able to help anyone, any time. Now, his is nearly bedridden, unable to stand on his own, relying on others to move him from his bed to his wheel chair.
He is confused, unhappy, and easily irritated. He is often disoriented and wonders often if anyone knows where he is. He once called the police to report himself missing… Despite the fact his wife is with him daily and his children, grandchildren and great grandchildren visit regularly.
He’s lost the ability to do even the simplest things and it is extremely aggravating to him. The remote control for the TV; the cordless telephone; these simple little everyday thins which he’s used on countless occasions befuddle him. He calls me sometimes to talk him through using the TV remote. I’ll tell him to push certain numbers to get to a particular channel and he’ll push the numbers on the telephone.
As the encephalopathy worsens, he worries more and more in his lucid moments that he is making a fool of himself. All we can do is assure him he is doing nothing that is a problem to any of us. That we love him, that we’re there to help, and that he is no burden to us, no matter how many times he calls to tell me he can’t reach anyone on the phone.
But we too wonder how much longer this will go on. How much longer will this wonderful man have to be witness to his own deterioration? We actually relish the day he will slip into a coma; when he won’t have to worry that he’s “wondering around” at night (despite the fact he can’t walk) making himself a nuisance. When he won’t have to worry anymore that he’s saying things to people he doesn’t mean. When he won’t be projecting his own symptoms on his wife so that he can try to help her.
It’s hard to watch someone die. It’s especially hard to watch them die a little at a time. But in many ways, we all cherish the time we have with him. We all feel good about the opportunity to give back something to this man who meant so much to all of us for so long and who was so willing to help us with any problems we faced. We simply wish it would be easier on him.