My Father was admitted to ICU on Sept. 29 with sepsis/double pneumonia. He was discharged home with me on Hospice Care on 10/01. We have him in his room but in a hospital bed and have been providing total care for him. He has been living with us and healthy since April, but he has no memory of getting sick or being in the hospital. Most of the time he knows where he is and he always knows us and any visitors.
The Hospice nurses all believe we are seeing end of life as did the marvelous physician he had in the ICU. However, this is going on so much longer than anyone expected. (He has been a very healthy and active 95 year old until now).
We don't really know if he understands how seriously ill he is, although we have discussed his illness with him. He does not express thoughts about dying, or tell us anything about his nighttime talking to relatives that have passed away (which I have witnessed). I am not sure how to approach this or if I should at all. He is a private and very quiet man, never complains about things and always has a positive attitude. SO I am just wondering, do I try to ask him if he has thought about dying? Or do I ask his Pastor to bring this up with him? He is a religious man, and we have read scriptures and listened to favorite hymns etc. together since his illness.
Help? Thoughts?
We had taken care of paper work years ago and I recently became a DNR so these things had been discussed on an ongoing process.
As a retired Hospice RN I would say not to actually bring up the subject. He must already know he is failing so wait till he asks questions and answer them truthfully. One patient pulled me down and asked me directly if she was going to die. I answered her honestly and told her she was. She then asked how long and I told her a few days. She then went on to detail the clothes she wanted to be dressed in for the funeral. She seemed relieved by
my answer and quite happy.
The best person to seek advice from is the hospice social worker who should be visiting regularly anyway. Or just call Him/Her and seek their advice
I wish to keep living the life I’m living now until I no longer can, and hope that my Loved Ones understand how distasteful it is to me to be fussed over and worried about, and yes, grieved over.
I will expect my loved ones to choose simple quiet means to dispose of my earthly remains, and they have heard me say so many times.
Clergy support will be welcome at the end, as they know.
Other than the above, I’m “needs to know” too. Or maybe even “don’t ask, don’t tell”.
In dealings with others I’m a Teddy Bear, but not for myself.
I read everything I could get hold of to know what to say. or not to say. I think the most helpful thing for me was something I read that was for starting the conversation and also mentions how to answer or respond if you are not sure; it went like this, - I hate that you are going through__________ , or, Im so sorry that you are having to deal with ________. Some of the Hospice material briefs through this. I guess there is not a clear answer because everyone is so different. Listen carefully to what he says. He may be trying to spare you the difficulty of handling this-
at my funeral." This opened up a conversation with my husband so that I was able to have his favorite person to sing it when the time came. His hospice nurse helped us begin the conversation.
I see that you've received a lot of wonderful advice here and that you have moved forward with the pastor's help. Removing the elephant in the room and normalizing this part of his life's journey is a kind approach, in my view. My dad and I were long-term members of the Hemlock Society when we were younger so the opportunity for candid conversation was closer to the surface for us. We weren't attending to learn about self-deliverance but because they provided a wonderful education about end of life matters and care in order to plan and prepare. The most beneficial thing I took away was to be able to define what constitutes quality of life at each stage. Your dad can still experience quality if you make the effort to determine which things bring him pleasure. For some it's visits from friends & family, For others it's their morning cup of coffee or their ice cream after dinner. They are things that we might easily overlook as small matters but they take on a greater significance to those whose choices have grown small. I hope you'll make your best effort to figure out as many of them as you can. Look at massage, music, favorite foods, singing, reading to someone, a wheelchair ride to see the leaves changing, old favorite movies, animal visits, sports shows, etc.
In summary, my answer to your question is yes. Involve everyone, especially your dad. It's lovely that you want to be present in the fullest sense of the word in this last chapter of his life.
Does he have a living will in which he wishes are expressed? I would talk to his main doctor about your dad’s prognosis, and what he or she had discussed with your dad. Also, I would ask if your dad was able to understand, and if so, what his reaction was.? Perhaps your dad has expressed his wishes to the physician, so this would be a good starting point. If dad is able to understand what is going on, I would discuss with any involved siblings etc the next step. Eg discussing with Dad “What do you want us to do if X happens, and it looks like you won’t be able to return to your previous quality of life” or something of the like. You could say “the doctors have asked us what to do if x happens, we wanted to discuss with you”. I wouldn’t put this on the pastor, but would of course include him or her if your dad would like their being there.
I actually did ask his Pastor to discuss these things at his most recent visit and they had a very good talk, discussing my Fathers feelings about facing end of life and his current prognosis to how his family is preparing for this time to making notes of favorite scriptures and hymns he would like in a service when the time comes. He seemed so relaxed and happy to discuss these things as if he had been waiting for the opportunity to do so.
Those being so, I don't think you need worry that your father would like to express his thoughts but can't.
On the other hand. If there are things you want to talk to him about or questions you would like to ask, within the bounds of tact and sensitivity of course, you should feel free. This time is precious to you, too.
He actually engaged my Father in a very heartfelt discussion about my Fathers thoughts and feelings around facing death and wishes that he might have.
We were relieved to hear him say that he had recognized that he may not recover and that he may be facing the end of his like and that he did not feel fear or anxiety about it. His wishes for the end were to be surrounded by those he loves and to not have pain or suffering and to be in a familiar environment.
I trust that we are providing these things for him to the very best of our ability and that we will be able to continue doing so.
I believe since he and his pastor talked that he has seemed more relaxed and believe that he may open up to us as well if he needs to discuss his feelings more with his family and loved ones.
I love margaret’s reply. To marcia’s reply, maybe your dad’s own pastor and the one with hospice can both meet with him. They will be able to guide you in your question - ie, first I think they’re there for you! See what they recommend. Dad probably won’t be surprised when someone initiates, and will indicate how much he wants to talk. Bless you all!
Our local priest was a great support to us all but the pastor sent by hospice was obviously trained in end of life care. Everyone is different. My sister had questions about death and things she wanted to discuss about her funeral. My dad, true to form, didn't want to talk about anything. I asked him a couple of questions and it was very clear that he wanted to be kept on a strictly "need to know" basis about what was going to happen and he had decided he didn't need to know.
I'm sorry you are going through this rough time.
This is the time to tell him any last thoughts. Just be careful not to make death-side promises that you might not be able to keep. I learned how promises can slip out and a deathbed promise can be 'binding' to you.
Lastly, you tell him about the various people he will be reunited with. You can even suggest that he is already seeing them - go with whatever he is ready to deal with. If he says he hasn't seen anyone, tell him that he will at the end - they will come for him.
I have no idea who my mother saw, but someone came for her. With my father, it was my mother who came for him. With my husband, it was his first wife and his oldest brother who had predeceased him.
To witness a passing is a most glorious gift; it is precious.
The other ‘end of life’ issues are practicalities like ‘what happens before death’- what sort of interventions he wants, or wants to turn down. Because Hospice involves a decision to provide comfort rather than to prolong life, it usually covers most of this. Hospice may have suggestions about how to deal with any more issues.
Other ‘end of life’ practicalities are about funeral wishes. Our family has always gone for a decent minimum. Unless you and your father feel strongly about this, it’s probably best not to make promises that will be very expensive to carry out.
One helpful conversation might be about any gifts your father would like to make from his possessions. Small personal items don’t necessarily have to fall into the estate and just get sold, and little gifts set aside for grandchildren, friends or family can have a very special meaning. He might like to make little notes to go with them. Thinking about this will be another way to make it clear to both of you that you are talking about what happens after his death. It may lead to the deeper conversation that you feel you need.
Best wishes to both of you.