How do we deal with Ed?
He has now started to tell Diana to get out of his room, rolls over and gives her his back when she goes in and tries to talk or watch tv with him. She is feeling hurt, I can tell by her face and I have started to tell her to "stay out of his room" when he is acting this way.
I believe that he knows what he is doing because when the hospice nurse is here or my sister or someone, he is very nice to them and talks nice but very angry towards diana and myself.
It is very selective. I feel that it is getting worse and I have decided to stay out of his room as much as possible. It is not easy as he needs us to help him as there is no one else to help us do this job. I know Mr. Marshall what you will say to this. I do not believe it is total cancer or he would be the same to everyone. why is he treating us like this after all that we have done for him in the past year????? How do we handle it???? I am so sad, so mad, I feel like no matter what I do for Ed, it is not enough. I asked him today why he wants to be here if he does not want to talk to us and he just started way. He has not talked to either one of us since Hospice two weeks ago. Not talking to me is nothing new for the past year but it is new to my daughter. Any advice anyone?
thanks,
Linda
Comments
-
Out of options
Since my first idea was a bust, I can only think of 2 options, a knuckle sandwich or speaking to the doctor and getting some really heavy medication. Not for Ed but for you and your daughter. Something that would make it so you just didn't care what Ed said.
Seriously, I wish I had a doable answer for you. I hate that while doing everything you must be doing for him, he can't see that. You're right, his selective treatment is not without fully functional facalties.
Have you spoke to his doctor?0 -
I'm sorry, Linda and Diana!!
All I can say is that I was told that the patient goes through a time when they purposely separate themselves from the ones closest to them to relieve some of the pain of leaving them. It isn't right in any way! When Lyle was in his last week...I had to introduce myself a couple of times...but he knew my dad. It was heart breaking...but it just was the way it was. Lyle was never mean...he kept his sweetness until the end...and even when he didn't really know me...he knew I was someone special to him. I'm sorry that Ed has chosen a meaner route to leave this world.
Does he need more meds that will help him sleep more and be more comfortable? If he's sleeping he can't get up on his own and he can't keep hurting the two ladies he loves the most!
My heart is with you both.
Susie0 -
Linda and Diana,
I am so
Linda and Diana,
I am so sorry for what you two are having to go through --- its like having to lose Ed and Diana's dad twice. Once now when he is so hateful and then knowing it won't be long before you really lose him. I can't imagine the pain that both of you are going through. Just try and remember the times when you were happy but that doesn't help much I know when there is so much anger in the air. It was like that for me when I went through my divorce, my ex was so angry that he sucked the air out of any room he was in and exhausted everyone around him. I know it isn't anything like what you are going through but during that time when my ex was acting that way I would not engage him and like you left the room. I know it isn't the way you want to spend the last days you have with Ed but at some point enough is enough and you need to take care of yourself and Diana.
I will be praying for you and hopefully Ed will come around, although after all this time I'm sure you aren't holding your breath.
Hugs to both of you,
Cindy0 -
Hi Sherriunknown said:This comment has been removed by the Moderator
Yes, I do remember that we have spoken and I admired you and your husband for your love and strength. You do remember Ed well, he was very very mad at the beginning and still is.
I totally agree with you Sherri and I will see how things go on and access each day as it comes. It has been a horrible situation right from the beginning and yes, I do have to think about Diana and myself also. We are left to survive this horrible year. I know it is a control thing, it is too bad for Ed and for us, that we did not bond together as a family. This is what poor Diana and I will remember for the rest of our lives. thanks for writing Sherri and thanks to all of you who have written on my posts., sometimes I just need to sit down on the computer and get it off my chest. I know you all understand what I mean. I hate getting up everyday and doing this.
Linda0 -
Linda just don't know what to tell you.lindadanis said:Hi Sherri
Yes, I do remember that we have spoken and I admired you and your husband for your love and strength. You do remember Ed well, he was very very mad at the beginning and still is.
I totally agree with you Sherri and I will see how things go on and access each day as it comes. It has been a horrible situation right from the beginning and yes, I do have to think about Diana and myself also. We are left to survive this horrible year. I know it is a control thing, it is too bad for Ed and for us, that we did not bond together as a family. This is what poor Diana and I will remember for the rest of our lives. thanks for writing Sherri and thanks to all of you who have written on my posts., sometimes I just need to sit down on the computer and get it off my chest. I know you all understand what I mean. I hate getting up everyday and doing this.
Linda
My heart goes out to you and Diana and Ed too. Not every exit is all music and light and laughter. You all have been thru so much. Everyone has a good take on what it could be. Can a hospice counselor come in and speak to Ed? Since he does relate to the workers maybe they could find out what it is that is bothering him. Maybe he wants to be nasty so in his mixed up thinking, it will be easier for you to let him go. We all have to remember he has brain mets and they can work in crazy ways. All I could think of I would not refrain from being in his room. I would go when I had time and sit quietly not saying anything, Diana could do that too. Don't try to engage him, just try to be there with him. Bring a book or knitting or something to occupy yourself. If he gets nasty and begins talking trash get up say I love you no matter what and walk out for awhile. I have been with my family when they were dying and I was lucky, no one was angry. We got to have peaceful goodbyes. This is just a suggestion and please invite others in the family to come and visit and spell you all, get out and catch a breath. Many hugs from a distance are coming your way!!! prayers and good thoughts for all of you.
Donna700 -
Ed
Hello Linda and Diana
I totally agree with Sherri. As hard as it is going to be for you both, kill him with kindness and tell him in a nice tone exactly how what he says hurts you. Do not use an angry, fighting, tone in your voice. Do not give him the satisfaction of fighting back with him. Neither one of you can totally ignore him, so deal with him the best you can. You do need to take care of yourselves. If he wants to be left alone, leave him alone, just deal with him when you have to. But... let him know how this makes you both feel. There has to be a whole lot of tongue biting, but it will pay off. Dad got mean, nasty, and angry with mom and I toward the end, but we made him aware of it, and he stopped. I think that men with cancer get angry because they lose all control. They are also very scared and worried. They do not know how to deal with these feelings, so they lash out with anger. My heart goes out to both of you. You have both had to deal with Ed's anger the whole time. That is a huge burden to deal with. Dear God please give Linda and Diana the peace they need at this time with dealing with Ed. Please make Ed realize what he is doing and how what he is saying is hurting them. Please help Linda and Diana to remain calm, and not give into the anger. Please bless them and surround them with your love daily. In Jesus name, Amen.
Tina0 -
Linda my father has hospiceTina Blondek said:Ed
Hello Linda and Diana
I totally agree with Sherri. As hard as it is going to be for you both, kill him with kindness and tell him in a nice tone exactly how what he says hurts you. Do not use an angry, fighting, tone in your voice. Do not give him the satisfaction of fighting back with him. Neither one of you can totally ignore him, so deal with him the best you can. You do need to take care of yourselves. If he wants to be left alone, leave him alone, just deal with him when you have to. But... let him know how this makes you both feel. There has to be a whole lot of tongue biting, but it will pay off. Dad got mean, nasty, and angry with mom and I toward the end, but we made him aware of it, and he stopped. I think that men with cancer get angry because they lose all control. They are also very scared and worried. They do not know how to deal with these feelings, so they lash out with anger. My heart goes out to both of you. You have both had to deal with Ed's anger the whole time. That is a huge burden to deal with. Dear God please give Linda and Diana the peace they need at this time with dealing with Ed. Please make Ed realize what he is doing and how what he is saying is hurting them. Please help Linda and Diana to remain calm, and not give into the anger. Please bless them and surround them with your love daily. In Jesus name, Amen.
Tina
Linda my father has hospice now as well. We have talked before. My father also had a brain tumor met. and whole brain radiation. Anyhow, his doctor gave us a book on the process of dying. It says that people withdraw from their loved ones and this is very normal and people do it in there own way. It is a way for the person to protect themselves. My father doesn't call me or my sister anymore and he doesn't really want to talk to us anymore. It's devastating considering I have been with him everyday throughout this.
Lindsay0 -
LindsayLindsayBrown said:Linda my father has hospice
Linda my father has hospice now as well. We have talked before. My father also had a brain tumor met. and whole brain radiation. Anyhow, his doctor gave us a book on the process of dying. It says that people withdraw from their loved ones and this is very normal and people do it in there own way. It is a way for the person to protect themselves. My father doesn't call me or my sister anymore and he doesn't really want to talk to us anymore. It's devastating considering I have been with him everyday throughout this.
Lindsay
I remember you, we talked before. I am so sorry about your dad and I totally understand how you feel. My daughter is going though the exact same thing. How old is you dad and what is hospice saying. Did they give you any indication of how long he has? I know you were very involved in his care, when did he get the brain met? Ed did 15 sessions of whole brain radiation and it did nothing. Who takes care of him?
Linda0 -
Anger is overrated.
Linda, I'm glad you have this forum to come to let out your feelings. My husband too has a lot of anger inside him. We both know that part of that is about losing control and part of it is just plain anger that this has happened to them. Totally understandable. I get to be the brunt of a lot of that too. It comes out a lot in the form of criticizing every thing I do, I just can't do anything right, because I might not do it exactly how he would do it. Like not parking in the parking spot HE would have picked, if he'd been driving (and in control, which he's not because he's too sick to drive which makes him mad.) Recently,I just turned around and told him he had to stop treating me like crap. That got his attention. Other times, he's just angry and lets it out. I figure he's entitled to a bad day and leave him alone. The thing is, I figure that it is because he loves and trusts me so much that he feels safe releasing his anger on and around me, when he won't act that way toward others. Doesn't make it any nicer to live through, but maybe that thought could be helpful to you and Diane, even as you wish it weren't so. You are, all 3, in my prayers.
Jen0 -
AngerBJeastOR said:Anger is overrated.
Linda, I'm glad you have this forum to come to let out your feelings. My husband too has a lot of anger inside him. We both know that part of that is about losing control and part of it is just plain anger that this has happened to them. Totally understandable. I get to be the brunt of a lot of that too. It comes out a lot in the form of criticizing every thing I do, I just can't do anything right, because I might not do it exactly how he would do it. Like not parking in the parking spot HE would have picked, if he'd been driving (and in control, which he's not because he's too sick to drive which makes him mad.) Recently,I just turned around and told him he had to stop treating me like crap. That got his attention. Other times, he's just angry and lets it out. I figure he's entitled to a bad day and leave him alone. The thing is, I figure that it is because he loves and trusts me so much that he feels safe releasing his anger on and around me, when he won't act that way toward others. Doesn't make it any nicer to live through, but maybe that thought could be helpful to you and Diane, even as you wish it weren't so. You are, all 3, in my prayers.
Jen
The other posts hit home a lot. My little (age 34) sister last year passed away after starving to death from a botched gastric bypass operation that left her unable to absorb any nutrients in her small intestine. This was a long 4 year process with the last 2 of pure hell....for my mother. She took care of my sister who was plain EVIL to her, even worse than Ed. She was abusive,combative and told my mom every minute how much of a horrible mom she had been all her life. She wanted my mom to lay in bed with her every minute. If my mom wanted to leave the room or God forbid the house she would say that you care more about going to the store, or whatever, than your dying daughter. My sister also had 12 year old daughter that at the very end refused to have her come in the room. My sister was mean before she got sick but add the illness, pain, pain meds, and her body shutting down from lack of nutrtion she lashed out. It was her way of placing her anger of dying. Yet she could still be "nice" to certain people when they came to visit her.
The pulling away is part of the dying process emotionally. The horrible behavior left my mom with Post Tramtic Stess, but it did do some good. I know it sound strange but it made it much easier losing her on everyone including my mom and niece. When the person you love is no longer that person it came as a huge relief to have her pass away. I know that sounds so cold but we prayed for her to go so the rest of us could have some peace too. My mom can now look back and remember the happy times when she was a little girl and be at peace that she is gone because she was such an awful acting person with a lot of a pain at the end.
2 months later her mom passed away from cancer and she also pulled away at the very end. Now, less than a year later she is caring for my dad with EC. He gets crabby with her but nothing like my sister. My mom tells me she can see him starting to distance himself from her and my niece, whom my parents are raising. I guess the point in the long post is to say you are not alone. You haven't done anything wrong. No matter what you do it isn't going to change Ed. This is about Ed and how he is choosing to leave this world. Hold on to your daughter tight, take care of each other, and find at least one nice happy thing each day for yourself. I'll be praying for you and everyone on the EC forum.
Deb0 -
thank you for your postingLivingFaith said:Anger
The other posts hit home a lot. My little (age 34) sister last year passed away after starving to death from a botched gastric bypass operation that left her unable to absorb any nutrients in her small intestine. This was a long 4 year process with the last 2 of pure hell....for my mother. She took care of my sister who was plain EVIL to her, even worse than Ed. She was abusive,combative and told my mom every minute how much of a horrible mom she had been all her life. She wanted my mom to lay in bed with her every minute. If my mom wanted to leave the room or God forbid the house she would say that you care more about going to the store, or whatever, than your dying daughter. My sister also had 12 year old daughter that at the very end refused to have her come in the room. My sister was mean before she got sick but add the illness, pain, pain meds, and her body shutting down from lack of nutrtion she lashed out. It was her way of placing her anger of dying. Yet she could still be "nice" to certain people when they came to visit her.
The pulling away is part of the dying process emotionally. The horrible behavior left my mom with Post Tramtic Stess, but it did do some good. I know it sound strange but it made it much easier losing her on everyone including my mom and niece. When the person you love is no longer that person it came as a huge relief to have her pass away. I know that sounds so cold but we prayed for her to go so the rest of us could have some peace too. My mom can now look back and remember the happy times when she was a little girl and be at peace that she is gone because she was such an awful acting person with a lot of a pain at the end.
2 months later her mom passed away from cancer and she also pulled away at the very end. Now, less than a year later she is caring for my dad with EC. He gets crabby with her but nothing like my sister. My mom tells me she can see him starting to distance himself from her and my niece, whom my parents are raising. I guess the point in the long post is to say you are not alone. You haven't done anything wrong. No matter what you do it isn't going to change Ed. This is about Ed and how he is choosing to leave this world. Hold on to your daughter tight, take care of each other, and find at least one nice happy thing each day for yourself. I'll be praying for you and everyone on the EC forum.
Deb
Deb and all the others, thank you so much for the long post, I do understand that it is part of the process but I also believe that some people just cannot handle their diagnosis right from the beginning, such as Ed. He is eating less, drinking less, sleeping more and more. I believe that this is the process and he is just shuting down. I feel that we do not have much time left together and honestly, I wish things were different right from the beginning for the three of us. Anger doesn't get you anywhere, we all know that, but there are times when a loved one can be so mean, it just puts you over the edge.
thank you so much for your words of wisdom, sorry you are going through another ordeal with your dad on top of everything else you have gone through. I pray everyday that God will take him in his sleep and he will go peacefully.
Linda0 -
This comment has been removed by the ModeratorLivingFaith said:Anger
The other posts hit home a lot. My little (age 34) sister last year passed away after starving to death from a botched gastric bypass operation that left her unable to absorb any nutrients in her small intestine. This was a long 4 year process with the last 2 of pure hell....for my mother. She took care of my sister who was plain EVIL to her, even worse than Ed. She was abusive,combative and told my mom every minute how much of a horrible mom she had been all her life. She wanted my mom to lay in bed with her every minute. If my mom wanted to leave the room or God forbid the house she would say that you care more about going to the store, or whatever, than your dying daughter. My sister also had 12 year old daughter that at the very end refused to have her come in the room. My sister was mean before she got sick but add the illness, pain, pain meds, and her body shutting down from lack of nutrtion she lashed out. It was her way of placing her anger of dying. Yet she could still be "nice" to certain people when they came to visit her.
The pulling away is part of the dying process emotionally. The horrible behavior left my mom with Post Tramtic Stess, but it did do some good. I know it sound strange but it made it much easier losing her on everyone including my mom and niece. When the person you love is no longer that person it came as a huge relief to have her pass away. I know that sounds so cold but we prayed for her to go so the rest of us could have some peace too. My mom can now look back and remember the happy times when she was a little girl and be at peace that she is gone because she was such an awful acting person with a lot of a pain at the end.
2 months later her mom passed away from cancer and she also pulled away at the very end. Now, less than a year later she is caring for my dad with EC. He gets crabby with her but nothing like my sister. My mom tells me she can see him starting to distance himself from her and my niece, whom my parents are raising. I guess the point in the long post is to say you are not alone. You haven't done anything wrong. No matter what you do it isn't going to change Ed. This is about Ed and how he is choosing to leave this world. Hold on to your daughter tight, take care of each other, and find at least one nice happy thing each day for yourself. I'll be praying for you and everyone on the EC forum.
Deb0 -
thanks again my friendunknown said:This comment has been removed by the Moderator
Dear William, I just jumped on the computer and saw your post to Deb., yes, it was a very truthful post and I had to read it several times before I really got it. You have such a way with words, you have a wonderful gift that you share with all of us., your words, your wisdom, etc. I will never forget you, I will never forget all the things you have told me even if I didn't want to believe they were true, even though in my heart I knew they were true. Yes, I will have my share of guilt, I already do, I sometimes wonder if I could do it different, better, somehow make it better, it's a mom thing you know, we are always trying to make it better for the ones we love. I believe that it why we are the ones who bear children. It's just something in us that we never feel we have done enough and yes, you are correct, I will always wonder if I did enough, I already am William. Did Ed harbour anger towards me before he got sick, I don't know, if he did, he never really showed it, but maybe his diagnosis gave him the courage, or shall I say, the nerve, to show it towards me. I believe I was a good wife for 25 years, I believe I am a good mom to Diana, and I also believe that I did the best I knew for Ed throughout his cancer ordeal. I stood by him for every single chemo treatment, eight months of it, fifteen radiation treatments, right up to now, taking care of him in his bedroom, throughout all this anger that I still get day to day.
He is my husband, I feel truly bad for him that he got this horrible cancer at his age, but I do not put all his anger to cancer and never will. I believe it comes down to coping skills on how we deal with life.
I do have people already in my life whom I believe think I could of been more compassionate, like my mom, but like I said to her "walk in my shoes", she does not live in my home nor does she know or understand what I have been through for the past year. I was grateful that Deb wrote me that posting, it made me feel like I am not alone.
Well William, another day has gone by, I take it day by day, sometimes hour by hour. I pray alot these days, I pray that he gives me and Diana the strength to carry on another day.
Thank you so much for thinking of me, I truly appreciate it.
Linda0 -
So Sorry
that you have to go through such a difficult and complicated situation.
I guess my only other thought besides what everyone else has said, is to maybe seek out counseling for yourself. A "professional" may have some ideas or strategies on how better to handle the dynamics between all of you. And Ed's angery issues. You cannot control others behavior, like Sherri said. But you can certainly control how you respond to him and maybe, just maybe, he will start to respond better?
My thoughts and prayers are with all of you.
Blessings,
Sally0 -
Hi Linda. My dad got like
Hi Linda. My dad got like that with my mom, as well. He was in so much pain and I believe, mad at the situation. My brother and I would go in & say, "Dad, be nice to mom. She is helping you." After he would be nasty, he would soften up a bit. It wasn't all the time, just a few times when he was in pain and we / she couldn't do anything about it. In the last day of his life, my dad was appreciative... Always saying thank you and thanking us for everything we did. I believe he knew he wouldn't be here for much longer.
I will tell you that it hurt my mom's feelings... I told her not think of what he was saying now - He was in pain and angry but to think of the 30+ wonderful years they had together. Just try, try to think of the good times.
When the doctor told my dad that the cancer was terminal, he looked at me and said, "Have a nice life." That will stay with me for a real long time. But, I cannot imagine what he went through or how he must have been feeling. I just know that I was scared and angry so I had to think of what he felt.
I wish you the best. It is not easy..... I wish none of us had to go through this. It is just not fair!!!!!!!!!!!!!!!!!!!!!!!!!!
Warmest regards,
Melissa0 -
Guilt, Anger and Regrets
Linda
You should have no guilt...you did everything you could for Ed. It's not your fault he is acting the way he is...how could it be? I don't think he had this anger before...
We never know what's in the heart or mind of others even when we share our lives with them..there are still things we'll never know and neither will they.
Never beat yourself up...Ed was always angry from the beginning...I was the one mad when my dh was diagnosed. I could never tell if he was angry...you can never tell his feelings at all...makes it hard most of the time...
Know that God holds you in his arms...this might be helpful or it might not be..he will give us what we need to hold up. I believe this but it's often hard to live it.,
Rest and find some peace...and don't feel guilt.
orion0
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