What is OK? - How to act around dying person??

[thrashej]

I need some information.

Is it not OK to break down and cry in front of a family member dying of CA? My Dad is in the end stages of his life and every time I see him I just want to curl up in the fetal position and cry. I feel like a lost little girl in his presence. I want to be strong, but I feel like all I want to do is say, "I love you so much, please don't go, I will miss you so much" and just bawl. I have heard that breaking down is bad but doesn't it show you really care too??? He is in hospice right now trying to convert to methadone from Oxycontin but is SUPPOSED to get out Wed when he is likely to have to come live with me. We are not sure if he will make it till Wed. I am going to see him today and plan to stay with him if possible. He won't let us care for him intimately and he has become incontinent of bowel and urine. Actually, he feels uncomfortable with ANYONE helping him, even the nurses. How do I deal with this? I want so bad to care for him....help him.....but he doensn't want it...WHY??. how will I care for him if we bring him home??????

I am so lost! Please help!

[Linda661]

I am so sorry you are going through this tremendous personal turmoil. The hospice organization involved with your dad should be able to give you the best answers to your questions you have posted here -- they are the ones most intimately involved and know your family and your dad first-hand. Don't be afraid to ask them these kinds of questions (they have counselors on staff for these sorts of issues) -- they are good at knowing the answers to such things and can help you know what to do, how to act, etc. with your dad now, and once he comes home to live with you.

I went through this with my dad and our hospice team helped us immensely with the exact same type of things. I found that there really is no one correct answer to what you are asking.

All the best to you and your family during this difficult time.

Hugs,

Linda

[kamataca]

I would agree about talking with your hospice team, too.

Family dynamics are so different that what is 'appropriate' in one family may not work in another. I hope you can find a balance. I'm just so sorry that you are in a place where you have to look for one.

I'll keep both you and your dad in my prayers.

Kelly

[missyk]

I'm so sorry you're having to face this. My opinion is that you go back to the relationship you had with your dad before the cancer. Was it ok to cry in front of him then? To express your "true" feelings?

I know with my mom, I took her in my arms just the other day, both of us crying and told her how much I hate this disease, hate what it's done to her, and hate that there's nothing I can do to help...but that is a rare occurance. I am normally the level-headed one who just processes the information and "deals with it". Showing her my vulnerability let us move past the "weird" part of it. I hope it helps. I agree that the hospice team will have some great ideas and advice for you...talk to them.

Big hugs and many prayers...

[sues]

Don't let Missy fool you - We have held each other and cried MANY TEARS TOGETHER . My son and I have too. I have no problem ( being the patient ) having one of my children ( or all of the ) lying next to me, crying or not ...Just being close to them - that's what I want . I just don't think we'll all fit in the bed at one time. When that happens I'll have someone take a picture and have Missy post it .- should be good for a laugh or 2.

[cindi o'h]

Missy and Sues, you girls are the best.

When my brother was so sick and intubated with lc and pneumonia, I started to cry, it scared me so badly. My BIL got mad at me and made fun of me for crying. I couldn't help it. I have never been one who is able to control appropriate or inappropriate tears.

Later, after he had gone through chemo and he was a bit better, and knew then that he was dying, I started to cry. I then apologized to him for crying. He touched my hand and said, "It's okay, it touches my heart and is comforting that someone feels sad that I'm going to die." (He was a crier too) So I just held his head and we blubbered together. Both of us sad.

Putting into words the intense feelings I was having was difficult. There was so much I wanted to say. I wanted to tell him how grateful I was for his life and for all the times he made me laugh. I wanted to ask for forgiveness for all the times that I hurt him. The words got stuck in my throat like heavy bricks and would not come out.

Best wishes in caring for your Dad. Sometimes words can better come through in a touch.

Cindi o'h

[SherA]

I'm so sorry you and your dad are having to go through this. I think that it's difficult for a lot of men to feel they need help from anyone. They are so used to being the strong ones, and when they can't do everyday things for themselves, they have a harder time accepting help from anyone. I think it would be especially hard for a father to accept help from his child, as he would feel it was his job to take care of you!

Accept as much support as you can from hospice. They are used to dealing with this and can help you with both advice and with his physical care. And we are here to support you as well. It's a rough situation, and you can only do what you are able to do, but you will find that you are stronger than you ever thought. As for showing your emotions, your heart will tell you what to do.

All the best to you and your family.

[thrashej]

Thank you all for the advice, I appreciate it.

Well, hospice feels that Dad is getting close to not being able to make decisions for himself (due to brain mets). We asked him whether he wanted to stay at hospice or come live with me and he can't reply to it. He says he needs to "think about it" and looks very confused. When we approach him again with it we get the same answer. We asked him if he liked being at hospice and he looked at us, confusingly, and said "NO". So.....hospice told us that we very well might have to decide what we think he would want. We talked about it and have decided that he would most likely want to be at my house, around family. The aids at the hospice told us that he won't even let them hold onto his arm when he is walking. That he won't let them touch him. So.....since we CAN touch him, albeit not enough, my house might be better.

I am trying to deal with all this. I have school and work on top of it. Trying to figure out which one to eliminate. We will need to hire a nurse for part of the evenings I think, atleast if I stay in school (it is nursing school and important). I have a lot to figure out right now. Time for a heart to heart with hubby. He said it was OK for Dad to come live here but when I told him the reality he did not seemed to thrilled. I mean, what can I do? I know no one LIKES it, but I don't want to put my 60 year old Dad in a long term care facility. I have seen those places and I know he wouldn't feel comfortable there. Hospice really is only short term and if not, would cost $150 per day.

Next couple of days they are delivering to me a hospital bed, bedside commode, the works. I have to clear out a room and start cleaning to make it feel as "homey" as possible. Lotsa work and school on Friday and Saturday. I am exhausted already and I haven't even started...

Everyone keeps asking me if I am prepared to do this. Well, excuse me, but how do I know??? I mean, how can you really know? All I know is I want my father to be comfortable in the last phase of his life and that I love him. THAT IS ALL.

Anyone have any advice for me???

[sues]

Don't know of any advise - you seem to be jumping in w/ both feet ! Hang in there.

I have already discussed this with ALL of my family. I DON'T WANT TO DIE AT HOME I want home to be remembered as a fun and happy place - not just a place mom or grandma died ..I have a friend that told me I was being selfish. That my family needs to be able to be with me all they want . I guess she's right to that extent.. I just don't want to put that burden on anyone else. Hospice will send people into your home to help. Let them help you with all this go round ..you sound like your plate is overflowing now. Good luck. God Bless you all.

sue

[Susan]

First let me say that I am so sorry that you have to go through this at all but I am so glad that you are hooked up with this group- everyone here brings a great deal of knowledge and support- it is incredible -

My personal belief is that if you feel the need to cry and tell a loved one that you love him before he dies then go for it!

There is not a day that goes by that I don't think of my Rachel and how much I miss her but if there is anything good to come from this dreadful disease it is that I had two years to tell my best friend in the world how much her friendship meant to me and how much I loved her. Many times these conversations were accompanied by tears streaming down both of our faces but it was important to me that she knew how I felt.

We often take what we have for granted and therefore don't take enough time to tell those around us how we feel-

I miss her everyday but have no regrets (i.e I should have called her last week when I thought about her, why didn't I tell her one more time that I loved her....I wish we could have laughed again about the pranks we pulled in high school...) because we went over all of that stuff in her final two years-

There is a great book that I read while going through this with my best friend Rachel- It is called "Final Gifts" and was written by a couple of hospice nurses, Maggie Callanan and Patricia Kelley.I think you would find it helpful and comforting-

Don't hold back what is in your heart-

[adela]

There is no right way or wrong on what to say to the person that is dying. Just being there is very important for them.

Take care, Adela

[thrashej]

Well, now they are not releasing Dad from the hospice. They now think he is shutting down. I was in school today but I guess he was not doing very good. I cancelled work this weekend and plan to go be by his side after school tomorrow. I wish I could cancel school but I can't without being dropped...I just wish he did not have to die in that facility. Truth is, though, I don't know if there is anyplace he could die that he would be truly happy and at peace.

I am just an emotional wreck. It sounds bad to say but I was wondering how I was going to take him being with me. My husband was stressed, I was stressed, before he even got here! I can barely even talk with him without breaking down in tears...and that is just at the hospice! Very hard to be "real and raw" because I will just bawl. I just don't want to lose him. I am suddenly 5 years old and losing my daddy. It is like someone is ripping me up inside with a knife. I was listening to Eric Clapton's "River of Tears" today just bawling. I hope I can hold it all together. I hope he will be at peace and know that we love him. I hope he won't think we just left him there..

Please, please, please say a prayer for my Dad and that he will find peace. I am so afraid he will die terrified.

Thank you all

Janice

[RandyW]

I may not know what to say but I think this link may help a little; this is a fave site of mine. Might make you cry but will give some insight and perspective into things;

http://www.inspiringthots.net/movie/g-rainbow.php

[babesdaughter]

I have already discussed this with ALL of my family. I DON'T WANT TO DIE AT HOME I want home to be remembered as a fun and happy place - not just a place mom or grandma died ..sue

My Mom died at my home and it is still a fun and happy place....caring for her and having her in my home until her last second was an incredible honor. We don't think of it where Mom/Grandma died....we think of it as the place we take care of FAMILY! It's a very personal decision, but I wouldn't have wanted it any other way.....I hope when my time comes, I have family that will do that for me.

You're headed into uncharted waters....it's different for everyone. Follow your instincts, talk to your hospice workers....be patient with yourself, be patient with your Dad....demand nothing but the best from your hospice workers.

With my Mom, I felt the same way you do....just wanting to cry all of the time. I finally just broke down....cried, sobbed...begged her to stay. We got through it....and then honestly, I was okay. I needed to get it out and then I could go on. I know that it was hard on her to see me so upset, but she did the total "MOM" thing and just let me....

My prayers are with you.....

[thrashej]

I told my father everything I had to say today. I stepped out of my comfort zone and just took the bull by the horns and said it. He, while not altogether "there", seemed truly pleased with what I said, even though I bawled the whole time. I can now say that I will have no regrets. I told him how much I would miss him when he goes but that I know I will be able to talk to him everyday and that he will be in a better place. I told him how proud I was of him for fighting so hard. I told him I knew how tired he was and that it was OK to stop fighting. I told him I (and my siblings) would be OK. We would miss him terribly every day but we would go on. We will take care of my brother, help him if he needs help, no matter what. I told him we all love his so, so much. I told him that he will always be my Daddy and I hugged him and cried. He said very little but what he did say meant a lot. I hope even though he is not really in reality that he knew what I was saying.

Ever since that conversation he has barely awoken at all. There is talk now about inserting a Foley because he likely will not move from the bed now. I hope so much that he goes quick from here. Please let him go quick from here. Please let him peacefully depart from this world now to a better place.....

I am at his bedside again tomorrow...

[RandyW]

I Lost My spouse to this disease so I know things are different but not different.It is good to make "Peace" with someone in this situation. Death will happen to all of us saick or not we are all going to die some day ya can't escape that fact. It does not get easier from here but what you did was to accepth this fact that it will occur. Your dad will be free from cancer and pain. you will not be free of the pain for some time though. I accepted Debs Death also I knew it would happen but not when. Some times the fight can be too much for the patient. Deb told me before she passed that she would not turn around and look for the light but if she saw the light she would run to it and embrace the warm comfort of it. She did that like so many people here.Take comfort in that when death does happen; no matter what your father will be in a better place with all those that have passed before us. We stay to continue their fight in different way though. We live to fight another day. also remember that whenever you want to talk to your Dad jusdt look up and there he is; smiling down and watching over you and protecting you. People Die an dLove does not die. Cherish each and every day that you can and pray for tomorrow. I hope this helps even a little bit in this time of sorrow and confusion aout all that is going on around you and your family. I will say prayers for everyone. Take care and stay well.

[SherA]

I'm glad you said everything you needed to say to your dad. I think it's important for both of you. You won't have regrets or wish you would have said this or that. And your dad can go in peace knowing how you feel and that you'll be OK. They really need to know that everyone will be OK.

Rick and I had the chance to tell each other a lot of things that we had always wanted to say, but never did until he got sick. I'm so glad we had the chance to talk, but I wish we could have talked more. He was only sick for 3 weeks before he passed, and I didn't think he would be gone so soon. I don't know if I was in denial, or if I really just didn't know, but I didn't think he was going to die. At least not for a few months or more. At the very least. But we did have a chance to talk, and that's more than a lot of people get. But it made me wonder why I waited so long. Why don't I tell the people I love how I feel when they are still around? I think about that, and remember, and I try to do things differently now.

All the best to you and your family

[thrashej]

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels.

I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people.

Janice

[Treebywater]

I'm so very sorry Janice.

[mhutch1366]

Very very sorry, Janice.

XOXOX

MaryAnn

[RandyW]

Janice I know how hard it is to lose a loved one. I lost my wife and you your dad. You have my deepest condolences and sympathy. Saying Prayers for you. If you need anything do not feel you have to be a stranger. You are part of this family, and we will help if you need it or want it. this is hard I speak from experience. DO not feel that we are gone because your Dad passed we are here anytime day or night. God Bless and Stay well.

[dihen]

My sympathy goes out to you and your family during this very sad time. Your dad's situation towards the end sounds much like my sister's FIL's situation when cancer had spread to his spine and legs - the pain was horrendous when they would try to reposition him or have him sit up, etc.

May you find comfort knowing that your dad is now free from pain, and flying with the angels!

[shineladysue]

Janice,

I am so very sorry for your loss. I know how hard this is. My prayers go out to you and your family.

Love,

Sue

[Patty]

So very sorry and wish you and your family much comfort and peace. Patty

[EastCoastLadi]

Janice,

I am so sorry about your dad, I send my prayers to you and your family. Please know you can come here any time for support and comfort. God bless.

Grace