How to Talk About Dying? (Re: My Grandfather)

Miscellaneous and Personal Stuff I Must Share
1

Hello everyone. I’ve been lurking for awhile now, but I decided to come out of hiding since I could think of no better place to go with my questions. I apologize for the horrendous title - I couldn’t think of just how to summarize this.

I’m 30 years old and I have lived a charmed life in that no one I am close to has ever died - I have a very small family, have never lost a friend etc. Right now, however, my grandfather is dying. My grandfather is really more my father, i was raised by a single mother and so he was the de facto fatherly influence in my life until my stepfather came along, and even for a long time thereafter. I have “known” that he would die, of course, but here we are and I find that I am utterly unprepared to deal with this, and not in the way that I thought. This isn’t about sadness (i expected that, and certainly do feel terribly upset) -it’s about the actual process of dying.

I was driving home from the hospital when it hit me - I have never talked about dying before. No one has ever told me what it is like, I’ve never been around it. I come from a family of health care workers, so when I’m at the hospital I feel completely useless - they seem to know intuitively what to do - how to adjust his pillow, when to call the nurses, how to move him just so to get him comfortable. I don’t follow their conversations, and everything is just so overwhelming right now that I’m not sure what is appropriate to ask, and when. So I turn to you guys.

I tried googling but everything is just so general - it’d be great to hear from anyone with an expertise in palliative care, medicine, social work - please don’t take my questions as heartless.

Key things to note - we don’t have a diagnosis, we just know that he is failing. He is 87, and it started with his hand. For two weeks now, he has had unexplained fever spikes and lows, rigors, sweats, breathing issues, extreme weakness, kidney failure and heart invovlment. The internist was in today and they are testing him tomorrow for a pulmonary emoblism, but it doesn’t look good. So here are my questions:

  1. Is there such a thing as a “typical death”? IE - is there a process that the body follows as it begins to fail? Are there things I can watch for, and what should I expect as he moves down hill? I recognize there is no such thing as a timeline, but I want to mentally prepare myself for what I may see, if that makes sense.

  2. What is the appropriate way to “be there” for someone in this situation? I recognize to a great extent this is unanswerable, and I’m sure I’m asking it wrong. We are not a religious family, and my grandfather is an atheist. He is profoundly scared and depressed. We’ve never been a touchy feely family, and I don’t know whether I should ask him how he wants me to be there. Is it a good idea to hold his hand if I have never done that before, how can I make him feel better? Just reading this, I feel ridiculous. All I know is that he wants to die - he’s told us as much and it’s heartbreaking.

Ok - thanks for listening and sorry for the rambling post.

2

Hi Jillyvn,

I’m so sorry your family is going through this. I’m sure someone will come along and give much better advice than I, but maybe ask him if there is something that he’d like. Maybe he’d like it if you’d read to him?

I don’t really do hugs (and you say you’re not touchy/feely…so consider yourself awkwardly hugged)

3

First, let me say that my thoughts are with you and your family.

I went through a similar situation as you about five years ago, when my grandfather died. I too had never had a close relative or friend die in my lifetime, so I was unprepared for all that was to come. I am not an expert in palliative care, nor am I a physician. But since I’ve been in your shoes (my grandfather was exactly 87 years old when he died too) I can maybe give you some comfort by talking about my experiences.

My grandfather expressed a desire to die as well close to the end. He was actually in and out of the hospital about a month before the end. During that time, he was conscious and had his wits about him, and he expressed a desire to die. I have to mention that he had suffered two strokes several years before this that caused him to have trouble finding the right words when he spoke. He also endured a knee replacement and open heart surgery, in the years after his stroke. We (the family) used to joke that he would outlive us all. I don’t think it occurred to us that he would think that was a curse.

Anyway, after his time in the hospital, my uncle and aunt, with whom he had been living for several years, decided they could no longer care for him properly. They found an assisted living place for him where he stayed for, again, about a month before the end. I’m not sure exactly what happened at that facility to cause him to go downhill so quickly, but he nevertheless ended up in a comatose state. My mother, father, and I lived about three hours away, and by the time we were told what was going on, my uncle and aunt had decided to let my grandfather die in this state by withholding nourishment. To make a long story short, there was a fierce and emotional battle between my parents and my aunt and uncle about this, with my parents eventually “winning” by being able to get my grandfather into a hospital, the same one where he was awake and conscious just a month before. That in itself was unsettling for me.

Now, to get to your questions. We received some literature on the death process, and from what I remember, the body just begins to shut down, as if someone is going around a large mansion and turning off lights. First the person loses interest in eating (no problem for my grandfather; he was comatose), then begins to go into a sort of delirium as the lack of nourishment begins to affect the brain.

The dying also sometimes have “fits”. My grandfather would sometimes “wake up” enough to tug at his urinary catheter or at the bedclothes, but never enough to converse with us. He would make noises, but I don’t think there was any thought behind them. The very end was really quite simple; his heart just stopped beating.

As for what happens after, it seemed all very routine, matter-of-fact. My grandfather had made arrangements with the funeral home years before, so there was no mad scramble to pick out a casket and design a service. The funeral home just came and took him away, and I never saw him again. Strangely enough, though, even all these years later, I still have dreams in which he is alive and well, still the same age but able bodied.

Where I cannot relate to your experience is in the depth of the relationship with your grandfather. I grew up several hundred miles away from my grandfather and only saw him once or twice a year at best.

My best wishes to you. I hope I have been able to answer at least some of your questions, albeit in a roundabout way.

4

I can’t offer informed medical or counselling advice (although I would have thought infective endocarditis would make a better differential diagnosis, but I digress and IANAD etc.).

What I can say is that as a human being, physical contact may offer your grandfather some comfort, and help express your own feelings towards him too, in a situation where verbal communication is pitifully limited. Even if it hasn’t been something you’ve normally engaged in, at worst he can shy away, or say no if you feel the need to ask. Neither of these outcomes is worse than not reaching out to someone who, for whatever reason, hasn’t explicitly requested it.

5

Thank you all.

Blisters, I like your idea about reading to him. I think I’m going to ask him if he would like that next time I’m down.

Statsman - thank you for sharing your story. It was actually really helpful to read through someone else’s experiences. In particular, I found this quote:" We (the family) used to joke that he would outlive us all. I don’t think it occurred to us that he would think that was a curse." to be really relevant to me… My grandfather’s been healthy his whole life, never ever sick, and that I think is what is the worst about this. Losing his dignity but keeping his mind. He can’t use his body, and that’s horrible.

Captain Awesome - I hadn’t thought of it that way. You are right, of course. Better for him to withdraw than be sitting there wishing someone would touch him but being to proud to ask.

I suppose I know there is no rule book here, but I feel so completely out of my depth. I just appreciate so much having this forum to use to vent without having to worry about if I’m asking the wrong things, or doing the wrong things.

6

I also have very little experience with people dying; I’m dreading the time my parents go. But I have read in several places (no cite) that some people, especially those who are the “caretakers” of the family, seem to need permission before they can die. You can try telling him that you’ll be sad but OK, if he wants to go. Some people hang on longer than seems possible, until they hear that.

Also, talk to him. Even if he doesn’t seem to hear you. He may be able to hear but not respond. And touch is such a basic sense, our first one. So stroke his arm or hold his hand. If he doesn’t like it, I’m sure he"ll let you know. Try again the next day.

And one last thing: Don’t take any crankiness the wrong way. He will probably take his irritation/frustration with the situation out on the family. It won’t be personal.

7

Jillvyn, I’m sorry you are going through this. It’s rough, even when you are “prepared” because you know it’s inevitable.

I strongly recommend contacting your local hospice organization. I think you’ll find the hospice people to be tremendously supportive, practical, and knowledgeable.

8

Wow, my parents dying all came rushing back. My mom went 3 years ago. Her body had been failing for quite a long time, including her kidneys. She was a very private, modest woman and losing control of one’s body and bodily functions seemed like such an indignity, I am “glad” I didn’t live in the same state as she.

Being there with him and just talking about how your day went is usually comforting. When my dad, whom my daughter also called Dad, as I was divorced and he was her de facto, too, was going, we just spent time in his hospital room b.s.ing about trivial stuff. He and my mom hadn’t been touchy/feely for years, but they became so during those few months.

There is no “right” way to handle this. It’s stressful for all concerned. And, as freckafree suggests, contact the local hospice. When mom was in for the few days before dying, they were so caring and gentle. I remember calling to wish her a happy birthday, but she was sleeping and they weren’t going to wake her, but the woman was very kind and assured me she would tell my mom. I felt relieved and comforted to know she was in such good care.

Hang in there Jillyvn. Sending warm thoughts of support to you.

9

Thanks again everyone. I’ve been following the comments in this thread, and reflecting quite a bit since my first post. I have decided a couple of things to make both me and my grandfather feel comfortable, and I’m feeling a little bit better about things today. I’m going to try reading to him, and see if he can enjoy that.

I’ve also made a decision about how I can comfort him in some small way, and I’ll share that here for any comments you may want to make. My grandfather is very concerned with the idea of legacy. Since he doesn’t feel there is any life after death, he needs for his life lived to carry on in some small way. I’ve just started my Master’s degree, and am now getting intermittant publications. The evenual hope is that this will lead to more substantial things down the line. My grandfather has always been supportive of my education - he has a grade 6 education and was extremely poor as a child and young man. I owe a substantial bit of the success I claim today to the work he did to pull our family out of abject poverty. Until I was 9, I shared his last name. When my mom married my stepfather, they changed my name to his. I have decided, discussion with my mom, to honor my stepfather’s decision by keeping his last name but I will be changing my name to include my grandfather’s last name (and my original surname) by way of a hyphen. I plan to tell my grandfather that this is my way of having him carry on with me as I move forward in my education and career. My mother thinks this will make him pleased, and it is something I’ve thought of doing for a long time.

I’ve decided to spend as much time as possible reflecting on him and the life he has lived, instead of constantly worrying about how and when he will be dying. It’s a constant battle with my mind, but I really am in a much better place today than I was a few days ago.