Advice about Death and Grieving

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End of life discussions with dying mom

May 2006

My mom, in her late 80's, living in another part of the country, has been diagnosed with an inoperable and deadly cancer. She is still functioning very well and not in pain, and (at least currently) will take no treatments. My problem is that I'm at a complete loss about what I need to do, emotionally, spiritually, before she dies. Finances and legal issues have been taken care of. My children are very young and hardly know grandma. I speak with her twice a week but it's mostly about medical facts and small talk about books or movies. The attempts I have made to discuss more emotional issues have been met with comments like ''I don't want to discuss depressing things, when you die you die, I hate when people have cancer and people look at them with pity and say - oh, I'm soooo sorry, I love you I love you.'' She does not want to resolve old conflicts, it seems to get her furious all over again - we've managed well over the years because we have learned to not discuss these things. But it frightens me that I will lose her soon and that there's something I will wish I had done or said. We are so lucky to have this time...but what does one do with this time? I would like advice about how any of you have handled this, any regrets you have had, and any spiritual or psychological counseling that has helped you understand your role with a dying parent. --unsure what to do


My heart is with you. If I say anything you are not ready to hear or it sounds rude, I apologize.

My mother, 84, died in October. She was confined to a wheel chair for years. When I walked into her hospital room a few days ''What (possesion) do you want?'' I wasn't quite on that page yet. Being the youngest, 46, my mother wanted to make sure I wasn't left out. Once I got over the shock, it was a wonderfully ordinary conversation.

When she was settled back at home, I asked her why she had refused the feeding tube? (as little cracking in my voice as I could) She said ''Why would I want to live like that?''

I was blessed to have those words. I know that dying for her was an ease to her suffering not something to be feared. I hope you are able to hear it, if this is what your mother wants to say. I really had nothing to settle. I later learned things from another sister that I wish I did not know. She did have issues but she didn't feel the need to go there with my mother (her stepmother).

My children (7 and 9)were in the room a few hours before she died and immediately after. My mother was Catholic, so we prayed the rosary before she was taken away. My children never seemed to have been traumatized. My mother had been getting progressively weaker all of their lives.

If your children could visit your mother, they might realize that she is ill and it may help them understand better. Unless she is a very young looking 80, chances are they already see her as an ''old person''.

I wish I had something to say that would ease you through this. At the risk of sounding like a Halmark card, your mother will always be in your heart. Which reminds me of when my oldest sister and brother went to the mortuary. My sister reminded the man that she had made the arrangements for my father a few years earlier and that we had a large family (more repeat business). He said ok, he would not charge for taking the flowers to the cemetary. To which my sister says ''Oh, I can't wait to tell mom that they gave us money off''. My sister did not realize that she had said it out loud until my brother pointed it out to her. We all smile and laugh knowing our mother would be amused.. My mother's daughter


You will have your needs in this process and she will have hers. It sounds like right now, she needs for you just to be the same-old-same-old with her in order to support her. That is one of the normal stages of dealing with dying (denial). So, since she's going thru the harder time, I'd listen to her asking you just to be the same daughter you've always been.

As for you and your needs, you might think some about it, maybe read some about dying, look into your religious roots on dying or consider therapy JM


My mother-in-law died of cancer last year after a 14 month battle. She had two sons, one of whom had periodically been estranged from her and who has been angry with her for his whole life. She spent most of her illness convinced she was in remission. I kept on waiting for the acceptance stage, and for the heart-to-heart between her and her sometimes-estranged son.

Neither one happened. Up until the day she died, she insisted she was going to get well, despite the fact that she was in hospice. She never had the slightest inclination to discuss spiritual matters -- she was a die-hard (so to speak) existentialist and remained so.

And yet, despite the fact that all these coming-to-terms things never happened, her death was one of the most beautiful things I''ve ever been part of. We all told her that we loved her when she was literally on her deathbed, and the sometimes estranged son made his peace with her in private, while she was semi- conscious. She died surrounded by her family, and felt loved, and that was all that counted.

So how do you spend these last months? Visit as often as you can manageand bring the kids with you sometimes even if she's too sick to interact with them. It will mean something to them later on that they knew her. Even visiting for a day or two will mean a lot to both of you. My husband called his mother every day, just to talk for five minutes and check in, update her on the grandchildren, work, whatever.

That's all you can do -- be together, enjoy each other's company. In the end, I felt like it was exactly right. If there's something you feel like you'll regret not saying, say it, but know that mostly what matters in the end is letting go, forgiving, accepting. Unless she wants to talk about spiritual/emotional matters, I'd do your processing with your partner, your friends, your spiritual advisor if you have one, or a therapist. One word of warning -- the year of my MOL dying was hell on my marriage. It brought up a lot for my husband that I was unprepared for. Counseling saved us. Good luck to you. It's such a hard, sad thing to lose a parent. nelly


Oh this is so hard, and I'm sorry you have to go through it. I lost my dad last year after a six year struggle with leukemia, and I had a hard time with the same issue. I didn't want to be overly dramatic every time we talked and make my dad feel like he was about to die, but at the same time, I was aware every time I visited that it could be the last time I saw him. So like you, we ended up chatting about nothing - or going over and over his medical history. I was frustrated with it at the time, but in retrospect, it was fine. What my dad wanted more than anything, I think, was more of the relationship we already had - the chance to spend time with me, not changed in any way, but to get as much time as possible together. So I'm happy that I called all the time, made the effort to visit as often as possible, and didn't radically change our relationship in any way. It's pretty hard for me to write about this in a public forum - and to fully describe how I feel about the experience 1 year later - but if you want to e-mail more about it, feel free to contact me Nerissa


First, I am so sorry about your Mom. How difficult it must be to deal with her illness. I truly feel for you. In my opinion it is important to respect her wishes at this time - it seems that trying to talk about emotions,etc just upsets her. This must be so hard for you. Are there specific things you still feel you need to tell her? Is writing her a card or a letter an option? That way you could tell her all you want to, and she could read it when she feels like it, and have a chance to absorb it. Even then, she may not 'open up' with a response, though. But at least you will have expressed it Anon


I so sorry to hear about your mother. I am happy that she's not in any pain and that all the financial and legal matters are taken care of. Three years ago my family dealt with my father's terminal cancer, each in our own way. My father was very private and we didn't ever discuss directly the fact that he was dying. This was difficult for me. At the same time I wanted to respect his choices. One book I found very helpful was Dying Well by Ira Byock. Even though I wasn't the one dying, this book helped me look at it from my dad's point of view. It was also really helpful in preparing me for his painful death. In the end the best I could do for him was let him know how much I loved him, and I believe he knew that. If nothing else this book could be a good place for you to begin. Remember, you can't change your mother and you shouldn't try to. But you should also listen to your heart - if there are things you need to say to your mother you should try and find a way to say them that respects both of you. Good luck and my thoughts go out to you in this difficult time - missing my dad


My father died suddenly many years ago, but one thing I did before he died (not knowing he would die soon after) was write him a letter. We had a difficult relationship, and in that letter I wrote him from my heart, acknowledging the pain between us, and that I loved him, and he wrote back, very grateful for my letter. We never talked about it, but I have been forever glad that I did that. So perhaps writing is way for you to say what you'd like to say to your mother, I think it is worth doing anon


My mom died 7 years ago and your situation sounds so familiar. I wanted to have those discussions about all those ''deep issues'' and my mom kept changing the subject. One day she just said that she got so tired of always having to talk about how she felt and what the doctor said and what they were doing. Sometimes she just wanted to forget that she was sick and have a normal conversation about mundane things. Periodically I gave her the opening to talk about her illness but almost always she ignored it. It sounds like you're taking your cues from your mom, letting her talk about what she wants and needs to talk about. Even if there are issues you want to resolve, you're giving her the chance to be in control of at least a little part of her life. It sounds like she's enjoying having some normal time with you, and that's a real gift from you to your mom. Cathy


When my first husband was dying of cancer, he did not want to talk about it. He only wanted to talk about cures and second opinions and even though it was clear to me that things were progressing rapidly he would not process with me the way I so needed. At the time I was living in Europe and didn't pursue looking into a grieving group which is what I really needed. It just didn't exist. When my mother died of cancer, four years prior to my husband's diagnosis, I participated in a grieving group in San Francisco which was great. The Center for Death and Dying? It was 15 years ago and I am not sure if it still exists. The loved ones of participants in our group were at all different stages of dying; it was immensely helpful. With my husband I found I needed to follow his lead. But I would also recommend processing this for yourself now, rather than later. It wasn't until the night before he died that I was able to say what I really wanted to say all along to help him let go, ''that everything here would be fine, his children, me, his finances... (whatever it might be) and that I would always love him very much. I think it is a rare thing to die feeling like one's work here on earth is completely finished. It wasn't until the last night even through heavy sedation that he was able to speak to me about his own death. I could go on and on but what it comes down to, I think, is respecting your mother's wishes and taking care of your needs too. She is not the one to process with, it's probably just too much for her. I wish you the best of luck as you go through this important and amazing time. Warmly, Nancy


I just saw this and wanted to tell you what my mom told me. I was extremely close to my grandmother (am not so close to my mom, although she was close to her parents.) Sorry if that's confusing. However, when my grandmother died several years ago, my mother threw herself into helping, working with her, being there, etc. about 400%. My grandmother never really talked about things all that much either, and I felt a real pull to be LINEAR, get it SETTLED, SAY it. I didn't, of course, because it wasn't my event, although I think that I said something one day and she didn't pursue it.

Finally, I was talking with my mother and I said ''so what do I SAY?'' She gave me one of those profoundly wise mom answers. She said: ''Dying is like going on a very long, long trip, all by yourself. You have to prepare for it. You need to do what YOU need to have done when she is gone, so that you don't have any major regrets. Take care of that. And other than that, just ... be with her. Just sit there. Be her company as she starts on her journey.''

I send you a hug. This is tough stuff cat


A year and a half ago I was in a very similar situation. I do have regrets, and could I do it over again I would have 1)written her a letter saying goodbye in a way I wasn't able to say out loud, 2) called hospice myself instead of waiting for her permission to do so, and 3) gotten myself some grief counseling WHILE she was dying instead of after her death. Some things I am glad I did: visited as often as I could and brought my kids to see her. Karen


Casual friend I like a lot is dying

April 2003

A woman I know is dying of cancer. We have a relationship for business reasons, so we aren't quite as intimate as friends...but I really like her and relate to her and always have nice conversations with her. This woman is very open about what is going on with her health, although she hasn't come right out and said ''I'm dying.'' I think she's one of those people who think, ''I'm living,'' no matter what stage of life they are in. But she has told me to spend as much time with my kids as I possibly can. My family really likes her family, her in particular. She and her husband have been very good to us in our business relationship. Our daughters have played together. But they live hundreds of miles away, where they have a huge support network. Given all this, what can I do for her, or give her, or them--especially her kids, aged about 6 and 8 years old? What would be helpful? Appropriate? A right-sized token of my appreciation of her? All suggestions much appreciated.


When my mother was fighting cancer, the best things she received from friends were truly touches from the heart: a card or letter expressing their love/fondness for her, a video of a friend's school kids singing to her, a picture of her favorite place and friends toasting her. The fact that you are taking the time to find out what to send tells me you know what to do... just talk or write from your heart. Justi


I commend you for wanting to keep your connection to your friend in this time. I was full of ideas until I got to the part about your friend living hundreds of miles away; that makes things much more difficult.

For starters, I would recommend telling her exactly what you have told us: that the relationship is meaningful to you, and in this time in her life you would like to be able to help her.

>From my experiences with dying family and friends, just keeping in touch on a regular basis is very valuable. You do notice who stays in your life and who fades away at these times. If you have e-mail contact, that is a great medium, because the family can read and respond on their own time table.

Is there any way through your business that you can make life easier for her and her family? Best of luck. Jodie


This sounds so sad. But it also sounds like your friend has a good support system going for her. What if you just broke through the protocol of business relationships and just flat out tell or write to the friend to let her know how much she means to you and what an inspiration she is. Another idea is to do something for her children--write up some of your favorite memories of your friend, include pictures, or comments, things like that. Give it to the children so that they can have more to look at as they remember their mom.

I guess the tricky thing is that she has not flat out told you that she is dying, and you don't want to step across a line. You could still tell your friend how much you value her--how much better to tell her if she can be a friend for years. And you could still write up the memories, but maybe keep them with YOU until her children need such things. Carolyn


Dealing with Grief - Death of a Spouse

I know it's been a few weeks since this topic first came up . I've been swamped with Open Enrollment, but I wanted to respond to the anonymous posting from October 22 on the woman who recently lost her husband.

First, you have my sincere condolences. I work in the Campus Benefits Unit. I lost my husband a year ago to cancer. We have three children, ages 3 1/2, 6 (first grade) and 8 (third grade) at the time he died. The oldest two are boys, our youngest a daughter. You didn't mention how old your children were and how your husband died, so some of this may apply, some may not. Also, I would be happy to e-mail or talk with you anytime. I've found it really helps to share experiences with someone who's been there.

First, we all had to acknowledge how hard his death was and that we missed (and still miss) him. We've always kept an open door for talking about him. We especially like to talk about the funny things he did and laugh about it. I've also always said that it is okay to cry and be sad. We still (and I always plan to) bring him up and talk about him as part of our life . what he thought about things, would have liked, too bad he has to miss this, Daddy would have been so proud, etc. I've always tried to treat the situation as if talking about the person who has died is a normal part of life . Don was so important to us I don't want to forget him and I don't want the kids to forget their father. At the same time, we have moved on with our lives. It's a gradual process, and if your loss is very recent, I'm sure it's not something you can even see yet . I couldn't. We all just took it a day (or an hour, or a minute) at a time and never completely gave up. I/We particularly found the first six months the absolute worst time, and find that now, my grief ebbs and flows and tends to get very intense around holidays, birthdays and things we used to do together. Also, it sometimes just hits out of the blue.

Moving on towards the children ... My kids tended to keep the best stuff for me. We saw a family therapist before and for awhile after Don's death. I'm sure it helped some . especially in terms of helping my sons get in touch with and verbalize their feelings. As young as my daughter was, she was very in touch with how she felt about all this. We also got hooked up with a wonderful art therapist through Kaiser hospice whom we have continued to see privately . she's a wonderful person who brings a sense of calm and caring with her, and she really focuses on each child during their time with her. The kids really love her, and we continue to see her because they want to.

We also found a few books that really helped:

1. Badger's Parting Gift, by Susan Varley: Badger has grown old, and in the story dies. The other animals, particularly Mole, really miss him. It talks about how Mole feels, and then the animals discover that remembering Badger and the special things he taught them helps them feel better.

2. When Dinosaurs Die, by Laurie (? I think this is her name) and Marc Brown (he's the author of the popular Arthur series): This book was a great jumping off point for talking about when people die, what happens, different rituals, feelings, what we can do to remember and honor the person, It's set up in two page chapters, and particularly with my two youngest children, we'd read and talk as we went along.

3. The Fall of Freddie the Leaf, I think by Leo Buscaglia talks about the life cycle.

I've also found a book recently called: The Loss that is Forever, The Lifelong Impact of the Early Death of a Parent, by Maxine Harris, Ph.D. I haven't read much yet, but it has given me some language and images of loss that I wish I had had a year ago.

I got all of these books at/through Barnes & Noble. Friends and the art therapist introduced me to some of them and this last one I found on my own.

One thing I did when Don died is that I talked to each of my children's teachers and told them I would be available to come in and talk about what is was like for Don to die. I thought of this because when I took one of my sons back to school, his teacher told him that the other children were not to ask him any questions about his dad's death! I was very concerned and was thinking that if I were six or eight I would have a lot of curiosity and questions and perhaps concerns (if it happened to him, it could happen to me) about what happened. With my sons' permission, and agreement that they wanted to do this, I did go in during the next week and talk with both classes about what had happened. The teachers' gave us time, and my son and I sat up front and I read the book about When Dinosaurs Die, then let the class ask questions. I think it helped us all (teacher, classmates, my child, even me) a lot. Many people, I've found, don't know how to respond when someone dies. By going in and talking to my sons' classes, I feel like I defused a potentially difficult situation and set up how we, as a family, were going to handle losing Don. The kids got to ask questions then, and I told them they could always ask me other questions later. I told my kids they could always tell someone they didn't feel like talking about their dad or his death . it was up to them and how they felt at the time . but we loved him and he was important to us and we wanted to remember him and talk about him when we felt like talking about him . that whatever they felt at the time was okay and they should say that. They haven't told me that they've had a hard time with anyone at school teasing them about their father's death . but we've tried to be very matter of fact about the situation and I've tried to give them a way to respond.

All three children expressed (and at times, still express) their loss in different ways . anger, acting out, sadness/tears, honoring their dad in various ways as have I. Some examples: I think my daughter cried at some point every day the first few months for her daddy. Now she tells me that he lives in her heart with God and is always with her, though there are still times, especially when I'm angry with her, that she still cries for him. My oldest son got LI'L DJ for his name on his baseball shirt last summer because he's named after his dad. My middle son recently wrote a memory book in school this year about the things he especially liked to do with this dad. Also, I've shared enough of my tears and sadness with them for them to know how I feel and that it's okay to be sad, and still get on with life. My kids don't stay too sad for too long at any one time, it ebbs and flows for them too. I hoped at the beginning, and still think that keeping the door open about talking about him and treating his death as a part of what can happen in life has helped us cope. It has been hard but it's something we've learned to live with. Sometimes it's still hard. I look back and don't know how we made it to here . I feel like we've been to hell and back and put each other through hell at different times, but we've survived and are doing quite well over all. The loss becomes part of who you are . you don't get over it, you incorporate it. Recognizing this has also helped me get through . I don't expect to get over it. What I have found though, is that there are still many wonderful things in life to enjoy.

Sorry to write such a book. I wanted to respond to you and just started writing about various things that have happened/helped this last year. As I said at the beginning, and I'll say again at the end, please feel free to contact me. With all the holidays coming up, I'm sure it will hard. Ours were last year. We did do some things differently which helped. I'd be happy to talk with you about that too. I don't know what (or even if) holidays you celebrate.

Marie


When my husband died my daughter was too young to remember him or really know what had happened. As she got older, and it got easier for me as I was through the worst as she began her grieving, the most helpful book for her was called 'Lifetimes: A Beautiful Way to Explain Death to Children' by Robert Ingpen and Bryan Mellonie. It was one of the few books on the subject, that because of its matter-of-fact tone I could read to her without totally losing self-control. It truly is a wonderful book and helped to explain to her how and why her dad died.

For me, the two most helpful books were 'The Courage to Grieve' by Judy Tatelbaum and in particular 'Starting Over: Help for Young Widows and Widowers' by Alice Rice Nudel. I suspect that 'Starting Over' is out of print now, but you might try a public library. I don't see a listing for it in Melvyl.

When talking to my daughter about her father, I was always very straightforward about what happened. I didn't use euphemisms like he's sleeping or he went to heaven. I just said he died. At first that didn't really mean anything to her because she didn't understand. But gradually she came to understand and as a consequence was always very straightforward about it with other people. She usually found some way to announce it to her classmates, so that they knew who she was. She continually surprised me with how she dealt with it. Movies that I found frightening as a child, resonated with her, such as Bambi and others where a parent died. Plus, I always made certain that she knew who would take care of her if something happened to me.

Be aware that your children may get very scared if you get sick. They'll need lots of reasurance that you just have the flu or a cold or whatever and you will recover. And Marie is right, you don't ever get over it, you just get on with it. From my experience facilitating a grief support group it takes between two and three years ( I know this sounds like a lot of time - but for me, just knowing that I would feel better sometime was helpful) to feel ready to move on.

Debbie

Grief and the Holidays

With the winter holidays approaching, and actually Thanksgiving already past, I wanted to share one thing that made a big difference for me last year in coping with Christmas.

At the suggestion of our art therapist, we made ornaments using photos and photocopies of photos with Don (my deceased husband) in them. We used some that were just him, some with one or another of us and him, and a family picture. We got out ribbon, glitter, sequins, glue and I don't remember what else - your basic collage materials and went to town. It was very therapeutic - it brought Don into our Christmas. We hung some of the ornaments on the tree, we gave some to other family members including his mother, and we used some for decorations around the house.

It was very simple, yet very meaningful. Before that, I hadn't found a way to incorporate him into our celebrations.

Wishing you all the best of holiday celebrations to all of you!

Marie