jmoneypenny

Missing U, you are so right! Those books that tell you to talk about every aspect of death just DON’T apply to everyone. My mother and I never really got to say good-bye or go through the details because I could see that she would get depressed if I brought up the subject gently, so I just didn’t bring it up anymore. So much depends on the person’s personality and some people don’t want to hash it all out. I still feel regret that I didn’t say a proper good-bye, but that’s the way she wanted it – she wanted to feel that there was still some hope, even to the end, and I wasn’t going to take that away from her. She was so angry at my stepfather for not saying good-bye before he died, yet she wound up being the same way. You never know how you’re going to react to the thought of dying until you actually go through it.

Lisa Ann, the most important thing Missing U said was about respecting the other’s wishes and going along with whatever they want. Lisa Ann, you know your father so well that you probably know what he’s comfortable with in terms of talking and such. Sometimes you have to bring up painful subjects anyway out of necessity – like talking about hospice or “do not resuscitate” orders or other urgent matters – but if he wants you to be in denial or be silent the rest of the time, then that’s what you should probably do. I was so in tune with my mother that I always pretended to be positive, not wanting to add to her stress. But I did sympathize with her and coddle her, too, which I think she really needed and appreciated. Once my mother mentioned that she would like a pastor at her funeral but she quickly changed the subject and lapsed back into silence so I didn’t push it.

At the end of her life, I tried to make sure my mother’s every request was fulfilled – even the irrational ones. Two days before she died, she worried that she hadn’t seen a doctor in a while, and even though I told her that hospice is all about AVOIDING doctors and there’s nothing they would do anyway, I knew she was stuck on that thought so I called the hospice nurse to come in and see her just to check her out physically. This made her feel so much better. Then she insisted that she needed a refill of one of her nausea meds, even though she had about 10 of them left. My sister didn’t seem to understand that you ALWAYS respect a dying person’s wishes, and tried to reason with her, but I just went out and got the refill for her meds, which cost $100 and she never even got to use ONE, but I don’t regret shelling out the money to make her feel better. Then, that last night when she had to go to the bathroom, my sister got out the bedpan and made my mother very upset – so I motioned to my sister to help me lift my mother so we could take her to the bathroom. My sister kept arguing and saying that we shouldn’t do that, she should use the bedpan, but I insisted as my mother got more agitated, and we finally managed. My sister STILL doesn’t see how that was the right thing to do — WHATEVER my mother wanted, I would give to her – she was dying and in pain! I would walk over broken glass barefoot if that gave her a tiny modicum of peace.

My mother also worried about taking so much morphine at the end, and wanted a pain patch too – and I couldn’t explain that addiction was the least of her worries – she was so afraid of pain so I fashioned a fake pain patch with the help of the hospice nurse and put it on my mother’s shoulder so she could feel better – then we got the real ones the day she died. Yes, I was lying to her, but it was the right thing to do if it made her feel better. I also told her that my father had just died – he had been dying of brain cancer for a year and she always jokingly said “that bastard is trying to outlive me!” He died a week after she did, but I told her he was dead while she was lying unconscious so she could feel like she could let go. That seems petty when taken out of context, but he made her life a living hell so it wasn’t the way it seems.

My mother and I don’t have any religious beliefs, just a kind of scientific spirituality – everything returning to the earth, with maybe a chance that there’s an afterlife – but when she was dying I said the same things to her that I heard her say to my dying stepfather:”You’re going to see your friend Maryann, who died so young – she’ll be so thrilled to see you! You’ll see Dennis and Slash (the dog) and Dave – they’re all waiting to greet you, won’t it be wonderful?” I don’t believe this myself and my sister was amazed that I would say those things, but I know those were words that comforted her and took away some of the pain and fear. I told her she could let go and that we would be okay – and as soon as she took her last breath, I said, “Mom, I lied, it’s not okay to go, I won’t be okay!!” But I couldn’t say that while she was alive.

I’ve gone on and on again – I should just create my own thread like Kate, it just seems like we have to re-live these things over and over again to get them through our thick skulls. But I hope my experience and Missing U’s experience can help you at least in not feeling guilty that you didn’t say all that you had to say. Definitely say “I love you” and follow your instincts about the rest. And you know what’s best more than anyone, except maybe your mother. You’re a wonderful daughter and I know your father treasures you, whether he’s demonstrative about it or not.

Sorry for the long post, and even sorrier for the pain you’re going through-
Joyce

Dear Rae,
I am so sorry that you and your family are going through this. As Patricia said, there may not be any vomiting or pain at all, or not until the very end, which was my mother’s case, too. Small consolation – I know. I wish I had words to console you.

I hope your father and your family find some measure of peace. My mother was also very depressed – as you said, it’s understandable — make sure you tell him you love him so you don’t agonize over what was not said. Of course I’m sure he KNOWS you love him, and I’m sure you tell him so, but I think it helps the depression a bit when there’s some human contact and affirmation. He may be pulling away from his loved ones right now, entering his own world, but he still loves you and his family dearly. How can anyone say good-bye? It’s unimaginable what he’s going through, the poor man.

My heart goes out to you and your family – sorry for my clumsy words, there’s no way to express my sympathy that sounds right.

-Joyce

Dear Sandy,
Though the loved one I lost was my mother, I can empathize with your pain at losing your husband of so many years. Feel free to vent and rant, as I do all the time here – the pain won’t diminish but at least you won’t feel so alone. We’re all in this together and in this time of grief that means so much.

My mother died within 2-3 months of diagnosis, too, so it’s like losing someone in a car accident – though you have a little more time to prepare, it’s still very sudden and I find myself in denial all the time – it’s so surreal, this can’t be happening.

I wish you some measure of peace to help you with your suffering. My heart goes out to you.
-Joyce

I can’t possibly respond to all three posts, as they are all so moving and intelligent and worthy of intelligent response. LTSO, your post was like poetry, and heartbreaking, and true. CDR, I’m glad you’ve started thinking of yourself instead of everyone else – you deserve it. And Kate, I just love your posts and your mom, and I love the book idea – I think I’ll try it if I can ever concentrate on anything again. I would add so much more but I’m becoming tedious with my long posts. I appreciate everyone airing their thoughts and giving ME some food for thought and some affirmation. I haunt this board as a kind of twisted tribute to my mother and my grief, but I do get so much out of it because of people like you.
-Joyce

Hi Colleen,
Nice to meet you! Your husband’s story seems like a very positive one in terms of response to treatment, and refreshing for all of us here, I’m sure. His youth makes his chances of beating this disease so much better, and I’m pulling for you and your family.

I just wanted to comment on one thing you mentioned: Crohns Disease. I was doing an Internet search the other day on the gene that may cause cholangio, and I came across a certain gene, and it was also implicated in the development of Crohns Disease, diabetes and rheumatoid arthritis, if I remember correctly. I’ll try to look at my recent Internet activity and find out what it was I was reading, if you’d be interested. Not that it can really help, but it’s amazing how much the docs don’t know and it may help to know there IS a connection so it can help future sufferers.

Anyway, best of luck to you!

-Joyce

Cdr and Colleen,
Mine is a different situation from both of yours, but my 4 year old daughter ADORED her grandmother and spent at least 2-3 days a week with her – my mother was more of a mother to her than I am, in many ways. She had some psychological issues, too, before this — a “strong-willed” or “difficult” child with intense emotions and fears that she wouldn’t share with anyone but my mother. I was so worried about her reaction to my mother’s death, and I recommend reading everything you can about the child’s age-appropriate needs, as I did. Especially the parts about being blunt and honest so they don’t form their own ideas or misconstrue what you say. If you say they’re in heaven, they may want to get to heaven to visit – my daughter wants to know if Grandma took her car when she left and she was trying to get directions to heaven so she could go there (going to carjack somebody, probably!) As I’m not religious, I stayed away from the imagery of angels and heaven because it just confused her – they’re so literal at this age. Though I do talk about her SPIRIT being around because she wanted to know what happens to the body (had to be honest, explain how the body stops working, there’s no breathing, no moving, no thinking, then it’s burned or buried) – and she still wanted to know well, where’s GRANDMA, even if her body’s gone? So she understood that there’s more to us than just a body – I told her that all the love and beautiful things that were in Grandma are in her spirit in the air around us, protecting the ones she loved. This especially helps at night lately, since she’s been having horrible nightmares.

My daughter was especially difficult in that she didn’t want to discuss all this until recently, 8 months later, though obviously it’s been on her mind and I started trying to discuss it with her way before my mother’s death, just to prepare her. She’s very stoic and her anxiety comes out in behavioral problems, so you have to constantly guess at what she’s REALLY upset about. So it’s a great sign, CDR, that your son is talking about it now so he can process it. And I learned that all children have a kind of delayed reaction, since they can’t focus on something for too long at one time, so my daughter was amazingly calm until 3 months after my mother’s death, when we visiited my mother’s friend who had taken over the care of my mother’s dog. My daughter told me she was going to stay with my mother’s friend and refused to leave. I realized she thought that wherever that dog was, my mother would be, so she was waiting for her. It’s so heartbreaking. Then she started acting up at school – uncontrollable tantrums and anger – the first kid in danger of being expelled from pre-school! I can relate to her, as I feel like having some tantrums, too. She’s seeing a psychologist but some issues are ongoing.

Anyway, sorry for writing a book, but obviously this is something I’ve agonized over and both of you have been, too. I read all the books and got picture books explaining death – go to Amazon and do a search for death books and there are plenty for different ages and different religious bents . But we only read ONE book, once – because I realized it was just too painful for her to be confronted with her feelings about it, and maybe I’ll try it again in a month or so. Also, be careful of saying that people die when they’re old, because my daughter keeps asking how old different family members are – including me – and then asks if they’re going to die soon.

Some say I have the consolation that my daughter won’t remember my mother and this pain, but it kills me to think she won’t remember their special relationship so I try to keep it alive – but gently. At least, CDR and Colleen, your children will have actual happy memories to console them later on in life. Something like this leaves scars on a child no matter what the age, but it also depends on the child’s basic temperament – and my child is a real basket case sometimes! My friend’s child is perfectly okay with the whole idea of death because she is a very logical and scientific-minded kid. My husband recently went on a business trip to China and my daughter completely regressed and brought up my mother constantly – because she was afraid Daddy wasn’t going to come back.

Thanks if you got this far!!! I’ll be quiet now!
-Joyce

Hi again Lisa,

Just wanted to say you’re a woman after my own heart – an animal person like me!! Though I’m in the city so I don’t have horses or anything, and on top of all that I’m allergic to every mammal in the world, I do have one cat now because I was fostering abandoned pets and then couldn’t give them up so I found homes for all of them but my elegant kitty is so skittish that I just couldn’t relocate him again. He won the Whiskas Cat of the Year photo contest in 2001 and I always brag about him and his dashing good looks. My mother and I had a dog together – poodle mix for our allergies – and he just died 4 years ago after 16 wonderful years. We were practically planning a family suicide party when he had to be put down – but I swear he was reincarnated in the form of my 4 year old daughter – smart, bossy, tyrannical. I still miss him so much.

Anyway, I looked at your animal pics and I love them. Good luck with the macaw – that’s a very big responsibility for someone to take on, so I would think it would be difficult to find a suitable person. We had all kinds of birds growing up since we were allergic to everything else, but then my sister and I developed allergies to birds, too. It’s just not fair!

Back to reality for one minute: I’m so sorry to hear that your mother is going through medical issues, too. This must be so tough on both your parents and on you, you must be so stressed out. Keep hoping – things could still look up! Here’s to good results-
Joyce