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Dad was placed on end-of-life care
Hi all,
Since my last post, on Feb 20th, my dad continued to rapidly progress – each day needing more and more oxygen. From 15 L to 20L; and then more than that. He couldn’t get to the bathroom to shower – so we started giving him sponge baths. We combined three 10L oxygen concentrators together along with a nonrebreather mask and it still wasn’t enough. I had wanted to admit him to the hospital for palliative care when he was at 10L but he kept fighting me on it; he was just too scared to go to the hospital. I had also called local paramedics who assured me that ambulances are equipped to give upto 25 L of high flow oxygen. So, getting him to the hospital would not be an issue.
On Feb 25th he had another exacerbation while simply trying to sit up in bed. And I just had to call the ambulance and take him to the ER, at which point the doc explained to us that he would only live a few hours to 1 or 2 days. So, they had him transferred to the palliative care unit to make him more comfortable.
He was placed on continuous IV hydromorphone and 50 L of oxgyen with a regulator/humidifier of some sort. And after a day or two he actually seemed to be doing okay. For about a week, he was able to eat, drink and talk well. He seemed quite alert and awake with minimal discomfort. We couldn’t believe it actually – he seemed to be better than he was the last 2 weeks at home, albeit totally bedridden; he also survived past the date the ER doc gave us. But as each day goes by, he’s getting weaker and weaker still. I guess the morphine was simply covering up his pain and symptoms so well that he kind of felt good. But for the last few days, he’s started showing all the signs of coming to the end stage:
- “death rattles” while he sleeps
- delirium
- low urine output
- needing more and more morphine to control symptoms
- sleeping for most of the day
- no desire to eat or drink
But even though it’s a very sad time for us, we’ve been grateful for the fact that we’ve all been able to spend as much time with him as possible, have our last words and memories with him, and ensure that he’s not suffering. All of our relatives and friends were able to video call with him and he was able to have his last words with everyone. And either myself or someone else from my family are with him 24/7 at the palliative care unit, so he never feels alone.
The one thing I regret is that I couldn’t convince him to go on palliative care much sooner. I think he was suffering too much once he needed over 5L of oxygen because once he got past 5L, his situation literally deteriorated in a few short weeks to where he needed to be hospitalized. Morphine would have helped reduce his discomfort a lot during those few weeks. I would recommend anyone with PF to really consider palliative care sooner rather than later.
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11 Replies
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Prayers for you and your dad as you go through this difficult time. Vishal you cared very well for your father and did the best you could with what you knew and your father knows that also. The love shows up in your comments here. This is a hard disease and I pray peace and comfort for you.
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Vishal –
Thanks for letting us know. Keeping your dad and your entire family in thought and prayers. This is a difficult disease for the person with the disease as well as their family. I agree with Cindy that your love shows through in your posts.
Marianne
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Sending you lots of healing thoughts and prayers. I appreciate you sharing your story, which I’ll share with my Dad with PF and our family.
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Hello Vishal – Thank you for sharing this with us. I’m wishing you, your dad, and entire family well during this difficult time.
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Vishal,
I so appreciate that you are sharing your father’s story with us. How wonderful that he has loving family around him that care. God bless your papa and you and your family.
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Thinking of you during this time. Try not to second guess yourself. You did the best you could and your dad knows it.
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Vishal–your description is so descriptive it rattled me. I lived through this but my dad was in a drug induced coma.I wonder why. I think it was because one of his lungs collapsed. But it seems so contrary that your father could and can communicate with you to the end. I actually think it is good to hear these stories–since so many of us –either by nature or education are taught to hold it inside.
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Update:
My dad has passed away – he went peacefully in his sleep on March 16. We all spoke with him the night before and a few hours right before he passed. My sister was with him at the hospital that day. He was awake at noon for a while watching some tv with her and then fell asleep around late afternoon. Later on, the nurse came in to check his insulin and she noticed that his breathing had slowed down greatly and had lots of mottling all over his limbs. She told my sister to call all of us to the hospital immediately as my dad was likely passing away. He passed away by the time we got there. He went very peacefully – no signs of discomfort or pain at all, which I take great solace in.
I share this experience because it helps me to write things out and so that it can help others here. One of the things that we were so apprehensive about was what the final days were going to be like. Would he die from a heart attack? Would he be in a lot of pain and discomfort? Would he die trying to gasp for air? The few stories I read online and my conversations with all the staff at the palliative care unit lead me to believe that the vast majority of PF patients pass away peacefully in their sleep (at least those that are receiving palliative care). So, I hope that this will help some people be less apprehensive about what may happen in the final days/weeks.
And thank you all for the kind words – this is really a great forum for support and information for patients and caregivers. I may not visit here too often anymore but please feel free to DM me if you have any questions.
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@vishal I am so sorry for your loss. Thank you for sharing your experience here, as it will certainly be a help and comfort to others. I really admire you taking the time to do that so soon after your loss. You have a tremendous heart. I understand if we won’t see you around here much from here, but thank you for being a part of this community. Wishing you comfort.
Christie -
I’m so sorry for your loss. I’m 79 years old and was diagnosed with IPF 6 years and 3 days ago following a left lung biopsy. I couldn’t agree with you more about starting palliative care sooner rather than later. I’m on oxygen 24/7. I’ve been a hospice patient now for ten weeks. It has made a difference in my life, but equally important it has helped my wife/care giver. She now has someone to turn if she needs help. I had no idea the services that are included. Their mission is to keep the patient comfortable. My hospice nurse visits with me every Monday morning. She checks my vitals and addresses any issues I have. Once hospice takes over they control all pain related drugs. Learning how to use morphine has been very interesting. My most difficult activity is taking a shower. It’s a very up to date shower with a comfortable place to sit. By the end of the shower I am totally out of breath. My wife now gives me 0.05 milliliters of morphine at the end of my shower and it makes a world of difference in how I recover. I’ve always thought of morphine as a pain killer, which it is, but it can be used in different ways. I’m currently using it to help with my breathing.
My doctor contacted hospice to confirm I was a candidate for their services. I’m pretty sure your doctor will have to be involved. I highly recommend hospice.
Ed
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Dear Vishal, so sorry for your loss of your Dad. I am praying for you and your family. If you follow this forum you will hear about different people with IPF or about their loved ones and then all of a sudden you stop hearing about them. Thank you for sharing his story with us. I’m sure most of us with IPF have thought how would it be when our time is up here on earth. Your father was surrounded with love right up to the end. What a wonderful way to pass from this world to the next. When you have IPF you have a lot of questions. Your father’s story helped us face reality a little easier. I am fortunate that I only have mild symptoms since I was diagnosed with this disease last June. Now that you are not caring for your father, lean on your family for support as you grieve your father’s death. Let them help you.
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