Is it OK? What is appropriate around a 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!

[Maryanne]

I wish I had an answer for you. Only the man upstairs knows when your dad will join him. I pray he makes it to your house.

You dad seems to have been a very independent man who just cannot accept help from others as he would not want to burden anyone. That's what dad are, they are there for us and not the other way around. This is his fight and he wants to do this himself. Unfortunately, that cannot be as he is so sick. So you have to make him feel like he is doing this himself.

I probably would hold my tongue and grive by myself and not in front of him. That would do nothing but really make him feel guilty that he is putting you through this.

Just be with him as much as you can and just keep telling him how much you love him. All that penned up grief will come afterwards. Sorry to say...

I am so sorry you are going through this. This is so sad all around. You are a wonderful daughter and your dad loves you so much.

I wish I had an answer for you. I pray that hospice gets his pain under control and he will be comfortable.

We are always here for you 24/7. You are not alone here, unfortunately, so many of us have walked in your shoes. This is so difficult, I am sending prayers for your dad and your for strength.

Maryanne

[Ry]

My advice to is to make sure you don't have any regrets once he's gone. When my father was dying, we weren't told until it was too late. Later there were things I wished I would have said to him. I think it's fine to cry, tell him you love him and will miss him every day.

About him coming home with you, he will need an aide if he won't allow his family to change him. That should be worked out at his discharge with the hospice. It's hard for the parent to reverse roles and have the child care for them. I wish you strength to get through this-- I know its hard.

Rochelle

[hollyanne]

hi -

On the pratical side -- they should insert a catheter for urine if he is coming home -- on the other stuff -- an aide if he won't allow you to help him.

No one can say what is appropriate. Only you know what your relationship is like. My mom wanted to comfort me. i didn't break down in front of her very often, but I did once in a while. Instead we just talked alot about life together, my plans for the future, shared memories, etc. i know it doesn't feel this way now, but you have been given a gift in that you have the opportunity to make sure that everything s said.

Can hospice hel at home be arranged?

I am so sorry. Prayers that you all find some peace and comfort during this very difficult time. You are stronger than you think!

Holly

[Frank Lamb]

I feel mabe you should have home hospice involved due to incontinence of bowel and kidneys.

I think it is ok to cry but in my case I would feel bad to see my daughters or wife crying because of me.

I could never stand to see them hurt or crying about anything even when I was healthy before cancer.

[dadstimeon]

Just be yourself, no reason why you cannot cry. Say the things you want to say, now is the time.

Being a father I can understand him not wanting help with certain things. It's not personal toward you. I know I would feel awkward if it was my daughter in that area. Hospice s/b able to help with his personal needs. Just help him if he asks and do the best you can.

So sorry you have to go through this, it is a very hard thing to do. Prayers.

Rich

[teresag]

I've had some professional as well as personal experience with dying, so I'm going to answer your question from both perspectives.

Your worry about saying or doing the "wrong" thing is shared by family members of the dying universally. Just remember that what is in your heart is sincere and truthful. Exactly what you said such as how you will miss your Dad & how sad you are, are perfect things to say. I think it is fine to cry in front of the dying person, too. Your Dad is experiencing a loss, too, and it is comforting to know that the sadness is shared. Perhaps once you have had a good cry with your Dad you will be able to talk with him. You might be blessed, as I was when my Dad was dying of LC, to have time to talk from your heart and say many things that were never "right" before then.

I will always be grateful for the few minutes I sat with my Dad just talking about my life and the choices I'd made. When I apologized for the times I screwed up and hurt him, he said, "All my girls were always perfect. You never did anything wrong."

Remembering those few minutes still brings forth tears 8 years later. So don't let your concern about saying or doing the wrong thing stop you from trying. That is what everyone here is saying, I think. You will do your best, and no one can ask that you do any more.

Best wishes, Teresa

[Don M]

If I were dying, it would not upset me if my loved ones were crying. If I could, I would try to comfort them.

Don M

[thrashej]

Thank you all for the feedback. I laid down next to my Dad in his hospice bed and held his hand today. I told him I loved him but that really was all I could do without breaking down. Honestly, I think it is him that is holding out on unfinished business. I just hope he can come to peace with his passing. And that I can bring my brother to see him

I will speak more with the hospice staff if he comes to stay with me next week.

Thanks again!

[ztweb]

Wow. I don't know what to say, but I do somewhat know how you feel. I am glad you made this post, and will read the answers along the way. I do know that more than anything else, we all want to feel loved, and if that is what you are showing...no matter how, that person feels good for love.

[kdgmom6]

this might get long. My MIL died 3 years ago from lung cancer. Nobody wanted to talk to her about it. My FIL got very upset if any of us spoke to her about the C-word thus none of her children got to say what they feel was a proper good-bye. My SIL now goes to ever medium/psychic, etc. to try and contact her to speak to her. She won't admit it but I know it's to tell her all things she wish she had when she was alive. Please talk to your dad, tell him your fears, how much you love him, how much your going to miss him. Don't pass up the chance. Many people lose loved ones w/out warning. We should all be somewhat grateful that sadly we are granted a heads up and let our family and friends know how much we care for them. As far as taking him home, I'm sure that you are going to have some difficult days. I'm a Nursing Assistant and I do feel that the best care is care giving at home. If you can and your up to the task I suggest you take him home and try your best. What ever the decision is you need to make sure that it is okay with you first. You will have a lot of precious and private time with him that most skilled nursing facility cannot provide.

I pray for you both.

Julie

[Joe B]

Personally, If he is the believing type.....I would talk to him about God . I would talk to him about the mercy of God, the bibles promise of life after death for thos that believe (John 3:16)....of the possibility of seeing each other again one day and how wonderful that will be. Most people are looking for hope of that type -- the bible does have wonderful passages that can ease fears and strengthen bonds (Psalm 23)..... my 2 cents

[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 housework and school on Friday and Saturday. I am exhausted already and I haven't even started... Don't know what I am going to do about work. I work PRN but am required to work so many hours a month..in the ER. It is a job I don't particularly like, it was a foot in the door of a hospital when I started nursing school but now it just seems like STRESS upon more stress. But it is a paycheck. I am supposed to work 12 hrs sunday too. Might have to give my notice on that. How will I even be able to do that? If I were to give anything priority it would seem to be school since that will give me a career in the end. I just did not want to have to tap out my savings.

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???

[Susan]

Have you been in touch with a social worker? They are often a wealth of information regarding home health visits- so that you have help-The hospice nurses should be able to give you info on different community services that might help-(they usually know waht medicare will pay for or private insurance if he has it)

As far as work goes- can't you talk to your boss and take a few days off.....

It all seems overwhelming right now but it will work out-

We had Rachel at home- her hospital bed was set up in the livingroom so that she was in the middle of everything going on - (we didn't want her to be feel removed) - it made it nice for visitors too-

Take a deep breath, count to ten- this will all work out-

[kdgmom6]

if so you can take it. I'm pretty sure that you would qualify. If not maybe a regular leave of absence so you won't have to quit your job. I'm so sorry that you have to go through all of this. You sound like a really strong person.

My thoughts and prayers are with you.

[teresag]

You should be entitled to family leave under the federal FMLA - the act which permits family members to take time off of work without penatly for family caregiving. Check it out.

As far as being prepared, you are so right about not knowing. NO ONE enters into family caregiving feeling fully prepared. You are the most qualified person on this earth, as his loving daughter, to do this. You wil do well, and you will get through this.

[cindi o'h]

You sound so much like me. I would have given up most everything to be able to take care of my Dad. We lived far away in differing states. I wanted to bring him to my house so that I could care for him. I still miss not having that opportunity to show him how much I loved him. I don't think he fully realized how much I did love him. Isn't that sad? Well, the bugger upped and died on me before I could hardly turn around. Grrrr. 'Course, I wailed like a mother who had lost her child; eyes swelled up like golf balls. Dang it.

Anyway. It is so lovely to be human; to have meaningful feelings and good family relationships; to know in your heart what needs to be done.

Everything will work out. The "rules" at school and work are there for those who take advantage of situations. You are not taking advantage. You are tending to family business, your father's ultimate time on this earth. Your managements will understand. You will be able to find a way. This is not the first time this kind of situation has arisen for them. They will find a way to get through without you for the time you need with your Dad.

Best of luck to you.

Cindi o'h

[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

[cindi o'h]

Pack a nice little bag for yourself and bring something (photos?) that will give your Dad some serenity. Sometimes they will let you stay overnight and find a cot for you if you don't bring your own. I am glad that you will be there for him.

I wish you peace as well as your Dad. This is not easy, dear.

Cindi o'h

[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...

[Kasey]

Janice,

How wonderfully you did! I am so glad you feel you have nothing left unsaid. It was such a gift you gave your Dad.........and for you too. Right now you are bedside and I am thinking of you. I am hoping for you and Dad that he is not suffering and can move onward in this journey painfree with no regrets.

Kasey

[Ann]

So very glad that you were able to say all of the things that you wanted your Dad to hear. I am so glad you are with him right now. I'm thinking of you and saying a prayer for you and your Dad.

[Darrell]

My daughter cries in front of me. It's made me fight harder seeing her suffer. You be yourself. Tell him you love him. There are so many things going through his mind and knowing he has your love will help tremendously.

[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

[Nancy B]

Janice, so sorry for the loss of your Dad. Your Dad is at peace now and I am praying for comfort for you.

Hugs,

Nancy B