My dad has colon cancer and heart failure and has been on hospice for 8 months now. He has been declining at a very slow rate. What I have noticed is that he will have these episodes where he has a serious decline to the point where his nurse will tell me that death is near. But, just like that he suddenly starts to recover and get better. Fifty six days ago he had an episode that left him really weak, on oxygen full time and he was even in bed almost a week barely eating or drinking and only able to walk to the bathroom. At one point he didn't have strength to move and collapsed in his bed. Then he started slowly getting better. Now he is almost back to the way he was before the episode that the nurse said were his final day’s eats normally, and is not on oxygen.
What is this yoyo like behavior? I have never seen it before. My mom also died on hospice but she had a steady decline then died suddenly. The trouble is I prepare myself for him dying then he gets better, then something happens and I prepare again then he gets better. It's emotionally taxing and absolutely draining. Family and friends are noticing as well and it has almost become a "boy who cried wolf" situation. It is not a rally or a surge because those only last a couple days typically.
I guess I'm just wondering if anyone has a similar situation or did have one. Especially if your loved one has terminal cancer. I desperately keep searching for answers so I can understand in some way what will happen. I am not very old thirty to be exact (parents had me at an older age) sometimes I get scared I will be stuck in this loop forever and that makes me feel selfish and like a bad person for not being grateful that my dad is still here when others would do anything for just one more day. I'm just so exhausted from the anticipatory grief. This yoyo type of situation just discourages me so much.
I have no clue as to why, however, I am sorry that you are going through the same thing.
You are not alone! My 92 yr old mother in law has these ups and downs every few days. Doesn’t want to eat, barely makes any sense and the diaper changes are fairly horrible. A month she was finally diagnosed. Stage 4 Bowel Cancer, Severely low blood levels and Dementia. I completely understand, it makes no sense. Sometimes she can’t find her bed that is beside her and ten minutes later she is asking what’s for dinner. The roller coaster is truly horrible! My heart goes out to you!
There is nothing deliberate about this.
And as an RN I can assure you that it is in no way unusual.
The body will strive to live. Some people have more "life force" and their bodies more determination to fight.
You ARE prepared for him to die.
In fact you are in some respects longing for it. And that is realistic and that is fine, and that is the only gift of a long death; we can move from praying someone lives to praying for someone's release. You will finally be free from standing witness to loss and torment you can do nothing about. He will finally be released from his heroic fight.
This has an ending. And that ending is near. But it seems it has rallying also. It must be "lived with " until he can die.
My heart goes out to you, but please don't use the boy who called wolf for this one. That says dad is doing something wrong, when really his body is fighting for one more moment of life. We do not all go gently into that good night.
They sent him to rehab , until we figured out what to do next , mostly because my Mom could not handle him at home , and she didn’t want strangers coming to the house to care for him . I was not willing or able to stay 24 hours a day. I worked part time , had my own family , kids .
Dad improved enough for them to extend rehab , then he went down hill again . He was moved to skilled nursing in the same building for “ comfort care “ , on Morphine and Ativan . He died 2 weeks later . But not before a rally of a few days where he ate and was very alert and talkative . In total it was nearly 4 months , with days he appeared to be declining and then would improve again on and off before the final decline .
And yes it’s emotionally taxing when they hang on . I’m sorry for all involved .
And this rollercoaster can be very exhausting emotionally, as when your love one is down, you prepare for the worst or their death and then when they seem to rise again, while you're happy they're still here, you know you must continue to carry on.
I was on this rollercoaster with my late husband while he was under hospice care in our home for the last 22 months of his life. I was told several times by his nurse that the end was near and my husband always bounced back. That was until he didn't.
And even then when he was actually dying hospice told me that he would be dead in 3 days and it took my husband 41 days to die.
So hang in there. Only the Good Lord knows the day and time that He will call your dad Home, so in the meantime just enjoy whatever time you may have left with him and make sure you leave nothing left unsaid.