Guilt for the care I gave my mother at the end

[Guest]

I have a lot of guilt concerning the care my father, younger sister and I gave my mother during her last days. I've wanted to write about it for a while but didn't know if I should or could, but I think I need to talk about it and know that those of you who cared for your loved ones for the end may be able to tell me what you went through concerning the subject matter I'm about to bring up.

I'm feeling guilty over the way which we administered morphine and adavan to my mother in her last days. Let me start by going back to the beginning of the week in which she died. On Saturday December 6th, she was still able to take her Lortab for pain in her abdominal area and for the most part was alert laying on the couch watching television all day or sleeping. However, that was the day that I realized that the end was near because she hadn't eaten for over two weeks and that day decided that she no longer wanted to take her Gleevec pills (clinical trial pills). I knew she had given up the fight. She also started to seem a little confused and was unable to remember when she took her pain pills. Over the next couple of days she became bed-ridden but could still use the restroom on her own. She was always tossing and turning and getting in and out of the bed so my dad asked the Hospice nurse if there was anything to give her to settle her down. The nurse prescribed adavan with a little instruction as to the amount to give her.

By Wednesday of that week it seemed that she was on constant adavan and morphine and for the most part was no longer coherent enough to speak with us, but strangely enough could still walk to the bathroom with assistance. I guess my major guilt lies with administering the adavan which as you probably know is a tranquilizer. I often wonder if we over-sedated her which in effect didn't allow her to speak to us. I often wonder if she would have had last words that she wanted to say to us but because we sedated her she couldn't. She died the following Saturday, December 13th after what seemed a very long week.

I just feel so guilty about the adavan. My father, 19 year old sister and I did the best we knew how and took the Hospice nurse's advice (although Hospice basically leaves administering drugs to the caregivers discretion, only advising not to overdose). It just seemed like such hard decisions to make. We didn't want her to be in pain, but at the same time I'm afraid she wasn't able to do things she wanted to do or say.

Did any of you other caregivers give the in-home care and did you experience this?

I feel so bad about it. I often wonder if she were in an inpatient Hospice or the hospital if they would have done things the same or differently. My dad and sister says we did everything right, but I honestly don't know. I hope to see my mom in heaven again one day, she'll let me know then I suppose how well we did.

Anne

[AnneBurris]

I always forget to log in , that was me.

[norme]

Anne, I read your post and started crying real hard because I sure fell your pain. You are so young to be experiencing such pain (guilt).

I for one feel that when Hospice gave me the meds for my Buddy, it was the first time he was without pain in the 17 months that he suffered from this horrible lc. Both Buddy and your mom were going through the death process when hospice was called in. there was going to be no reverse of their conditions at that point. Buddy was only to glad to be getting the morphine for the pain he had suffered was bad, real bad. I would do the same thing all over again to stop the pain and let him die in peace.

I know my sister-in-law had a bad time thinking that the morphine killed my brother but it didn't. He to was dying, that is why hospice as called. He wanted to go into the hospital and did I think it was a day or two before he died. He made me promise to give the okay for the morphine at the hospital for he told me he new his wife would not and he did not want to suffer. He had such a hard time breathing and the morphine helped with that.

Hope this helps you some to stop the guilt trip. We all did all we could in the end for our loved ones. They knew we would do what was best for them for that is why they allowed us to be with them. God Bless

[shelliemacs]

Gosh can I relate to the guilt even though I was not the one giving the meds.

My mom was suffering in her last 10 days and she was so swollen and her limbs turned a purple color that the doctors told us was nothing to worry about. but looking back now I see that she was actively dying.

she was in allot of pain and they didn't give her morphine to sedate her but to try to ease the pain, which was never eased. her last morning alive I was talking to her but she was making no sense at all. She kept telling me she had to go, she had to go and I thought she meant to the bathroom so I made the nurse put her on a bed pan and she meant (at least no I think) that she had to go to heaven and I was getting so irritated that I could not understand her and when they came in to get blood and kept poking her and poking her and her veins had collapsed and I nearly tore the tech head off and short of physicially accosting her I threw them out of her room and told her when a #%$#$ doctor came in to tell me whats happening then you can take blood from her but not until.

well they sedated mom and she went into cardiac failure and died.

my guilt is in that I was not listening to mom at the end and hearing what she was telling me. I humiliated my mother in her last hour by making them put her on a bed pan and I will never ever forgive myself for that.

[teresag]

Dear Anne, Listen to what wise Norme says. What your Mom was experiencing before she got the Ativan and morphine is called "terminal agitation." It is not uncommon, and it only worsens the suffering for both patient and caregiver. The person becomes unable to rest or sleep and this intensifies pain and confusion.

The fact that your Mom could still walk with assistance tells me that she was not oversedated. You did the right thing; you treated her pain and her agitation. Do not fear these drugs; for you and I they are powerful, but for someone with terminal cancer they are like taking an ibuprofen.

I hope the hospice nurses told you their maxim: "Pain is the antidote for morphine." In other words, pain counteracts the sedating effects of morphine. The situation is probably true for Ativan as well.

You did what your Mom needed; you kept her comfortable, and that is a wonderful thing.

[cathy]

Anne

I cant believe you brought this up.. I too am haunted by my dads last hours, hospice was the one administering the morphine in my dads case. Its too painful for me to go into detail, sure wish I could, its not going to change anything for me to talk about it so I try to erase it, but just as you it wont got away, it knaws at me daily, I just keep waiting for time to pass and hope to heal..What else can we do, I wish things were explained to me and my family a little more thorough than they were.. I feel your pain Anne....

[AnneBurris]

I appreciate your posts, I have another question:

My mom didn't drink water for 3 days before she died. At one point I even wondered, are we sedating her so much that she can't even drink water?

Did your loved ones stop drinking water for a time before they passed on?

Anne

[Guest peggyd]

I went through the same feelings of guilt with Mike. The doctor told me that I could not overdose Mike on the morphine. I don't know if that is true or not. We followed the hospice directions with the meds, morphine and atavan. Again, however, the hospice nurse said that the morphine would help him to breathe better and that if he needed it, to go ahead. I have come to grips with that though at this point. Whatever made Mike's passing easier, and I believe the drugs did, was what I supposed to do. Mike was pretty well out of it when he passed. But to me that was a blessing. He didn't experience any fear or pain. He just went to sleep. There was nothing else that could be done for Mike. We knew he was going to pass. If the drugs cut short his fears and pain, so be it. I had prayed that God would take him gently. My prayers were answered. Don't feel any guilt. All that could be done was done. God was calling our loved ones home. Whatever made that passing easier was God's blessing.

Peggy

[Guest peggyd]

In answer to your water question, yes Mike did stop drinking before he passed. He had a prostate problem as well and we were trying to get him to drink to keep him from getting infections, etc. Even before he was on the morphine, atavan, and he was in the hospital, it was difficult to get him to drink (or eat) anything. I believe that is just part of the dying process.

[Elaine]

Anne

I posted a few days ago about how I felt guilty for being sick and that my dear children will have to go through what you went through. I was told there is no time for "negativity" or "bull shi_", which hurt my feelings a great deal. Guilt is an inevitable human response, sometimes warranted, sometimes not and usually somewhere in the middle. However, you can't possibly be at fault for anything here. You did what you did FOR your Mother not TO her. I was a caregiver for my father, and when the time came we did the same. It was a blessing. And a long story.

As far as your mom wanting to say words to you. I think she said them with her life and the love she had for you and the times she told you she loved you or did things for you or laughed with you or cried with you. That is what she wants you to remember, those times. I know this, believe me.

I am a little worried however about your hospice because I feel they should have been more upport to you and your dear young family. Where were they? How long before YOur mom passed did you call them in? Some hospices are just basically medicine at the end of life providers, I fear. I know this from experience. SOme do more of what they say they will do. SOme do less than is even conscienceable. Again, I know from expereince.

It is a shame, I know, but true, that they like other health care providers work on a cost effective budger arrangement. Ofen they recieve the same amount of money regardless of how much or how little care they provide.

Anne, I am glad ou finally were able to get this out. It is someting that you neednt carry alone because as you have found out, others have been where you have been and can assure you that you acted out of love for your dear mother.

Elaine

[Guest]

Elaine,

Thanks for your response. Actually, I highly recommend the Harry Hines Memorial Hospice here in Wichita. They were great. The only problem is that I wanted them to tell me whether or not I should give the adavan and they said if I thought she was restless then I could but it was up to our family. Everything seemed to be "up to our family". They pretty much leave the decision making up to the caregiver, which is o.k. But at the time it is just so overwhelming, I would have felt better being told what to do rather than feeling so responsible for everything.

If I had to do it over again, I would prefer she be in an in patient hospice simply because I found that we were calling them all the time and were overwhelmed with responsibility. We never knew that she would need someone to be awake with her 24 hours a day during that last week. The three of us took shifts simply because we were afraid she would get up and hurt herself trying to go down the stairs or falling down or something.

Hospice came to the house it seemed every other day to check on her or whenever we asked a nurse to come out. They were great about delivering meds, supplies, and all other needs very quickly. They were very patient and understanding on the phone. I just wanted someone to tell me EXACTLY what to expect and they really couldn't because everyone is different in their passing. But, I wouldn't discourage you from using them, because it would have been so much worse without them. They are wonderful people.

Take care.

Anne

[TeeTaa]

This string of posts just breaks my heart for all of you. But I must say - don't beat yourselves up!! You all did what you could at the time, and your loved ones know that you were there and you loved/still love them.

I've mentioned this in messages before, but I think it's important that I mention it again. There's a book that I highly recommend all of us read . . . and I do mean all of us . . . patients, caregivers, and those who have already lost someone. It's called "Final Gifts" and it was written by two hospice nurses, Maggie Callanan and Patricia Kelley. For those of you who have already lost someone, it will perhaps give you some peace and an understanding of some of the things that happened during those last days. For us caregivers, it enlightens us a bit as to what to expect. And for those of you with this horrible disease, it will give you some understanding and perhaps prepare you to communicate more effectively with your caregivers.

I cannot recommend the book highly enough . . . while some of it might be difficult reading, it's worth it.

Peace and blessings be with you all,

TeeTaa

[AnneBurris]

Thanks so much Tee Taa, I hadn't seen your previous post about that book. I'm gonna go to Amazon and see if they have it.

Anne

[DeanCarl]

All right you guys ... STOP IT! RIGHT NOW! (the guilt thing that is).

Go to this web site: http://crossingthecreek.com/main_index.htm

It's a site done by a hospice doctor and some others that shows that what you're loved ones experienced in their final days and moments was PERFECTLY NORMAL and had NOTHING to do with too much meds or too little meds or what kind of meds or whatever. Like Tea Tea's book it may be a hard read for some, but no harder than what you are doing to yourselves.

Dean

[natalie]

Hi Anne,

My mom stopped eating and drinking 3 days before she died too. I've often wondered if they overdosed her with the morphine. Before she slipped into the coma, I was the last person she tried to say something too. She looked at me with wide eyes and was trying to tell me something but she was trembling with her lips and very uncomfortable and couldn't say anything. This vision stays in my mind often and I always wonder what she was going to say. The antivan helped calm that agitation. You probably helped her more than you know by giving it to her. I'm sure your mom said everything she needed to say by then. Bottom line is she loved you and she knew you loved her...there really isn't more that needs to be said in my eyes, right? If there are things in her past that she may want to say she's sorry for or things she never did say, I'm sure you already know inside what they are. I was at a point in my relationship with my mom where I knew what she felt even without the words being said and I could probably predict what she would say. I keep asking myself what my mom was trying to tell me, but in realty at that point she was so sick, she might have tried to tell me that the sky was blue. My mom kept rambling about her needing to tell her sisters to give me the money and I don't know what she was talking about and I keep thinking that is what she was trying to tell me about. That bothers me because of course I want her wishes honored whatever they were but who knows what her frame of thinking was at that time though.

My grandpa died of cancer and he asked my Dad to come into his room alone so they could talk. My Dad thought my grandpa was going to say something so profound and meaningful...but he didn't. He talked about random things. My father was disappointed.

There was also a time where my mom had a severe infection in November. She was on absolutely no drugs. I even tried to give her antivan or a pain pill and she said I was drugging her and trying to poison her. She then said, "what are you doing here?" "what do you want with me?" "are you trying to kill me?" This was the infection, the disease...not the drugs. it's just horrible. Luckily she came out of that and when we told her what she was saying she thought it was funny and doesn't remember a thing.

The other option was to have your mom uncomfortable and in pain. You did the right thing. Anne, I'm sorry you feel guilt over that but I'm glad you brought this up. I'm glad that we are able to talk a little more candidly about this.

[Kris]

Dear Anne,

As others have told you, you are not alone in what you are feeling. At six months, I am still trying to push those nasty, constant thoughts from my brain. In truth, I know that my Dad was much more comfortable while he was on those very strong drugs the last few days but at the same time, he was completely unable to move or communicate with us. My biggest regret is that I didn't know we should be sitting with him all the time and talking to him and holding his hand or rubbing his feet. We were all in the room with him at all times but we weren't always right beside him. He was quite restless and agitated before they decided to put him on the Atavan and Morphine and I think part of me was afraid to rouse him. I couldn't stand to see him in the state that he was in before. And now, after reading so many of these posts on the board, I know that I could have had that time with him. Comforting him and letting him know that we were always there. I didn't mean to make a book out of this...I just wanted you to know that your post touched me because I could relate so well. We just have to remember that we did the best we could with the information we had. I think our parents can only love us and would not feel as if we let them down. Now, we just need to convince ourselves of that.

Take care,

Kris

[KC]

I too have been haunted since my father passed away and that was just this past Sunday, March 21, 2004, with feelings of guilt. That is until I finally read www.crossingthecreek.com. I now understand what was happening. I am just angry that the doctors and nurses didn't inform the family that my father was dying. Actually, just the day before his oncologist asked him if he was sure he wanted to go home with hospice because that would mean that they would have to stop all treatments and he would have to give up his doctors care. My father called me on the phone to ask about that and that isn't what he wanted. He went into respiratory failure the next night. After reading crossingthecreek.com, I realize how long my father had been in the dying process. It had been 2 weeks, he went through all of those phases. I thought maybe they did too much in the hospital with all the pain killer, iv liquids, blood transfusions, etc. But everything he experienced was part of the process and i'm thankful that he was mostly pain free during most of it. Crossingthecreek.com has helped me just today to realize that none of it could have been prevented. It was his time to have the suffering and pain come to an end. I miss him very badly and I physically hurt, but I can't feel guilty. My father wouldn't want me to and neither would your Mom. Please visit the website, it will help you understand what happened. They also talk about how it is actually more comfortable for the patient to be somewhat dehydrated during the dying process. I wish they would have stopped the IV fluids for my dad. I also wish I would have read crossing the creek sooner, I would have understood more.

[J.C.]

Anne,

What helped me the most is the book that Tea Taa mentioned

and also the site

http://www.cancerpage.com/centers/Transitions/index.asp,

All the rest was said already in the previous posts.

Peace

J.C.

[teresag]

Please, please do not blame yourselves for hastening the death of the person you loved so deeply. The drugs ease the suffering, but it is very unlikely that you or the health care providers would give a dose large enough to kill someone. The pain and suffering of a terminal illness as the body begins to shut down causes release of powerful chemicals that cause agitation and discomfort. The body is fighting hard not to die; huge doses of drugs would be needed to shut it down. The doses of morphine or Ativan or whatever was given are enough to settle this activity, but rarely enough to shut down the body.

Typically, the person has had powerful opiates for pain relief already by the time he/she reaches the final stages of dying. So the individual is not "opiate naive," as we say in nursing. A certain degree of tolerance has developed, so doses that seem huge to you and I are not huge to the person who is dying of cancer.

The doctor who said you cannot give too much morphine was right. If the person needs it, give it. Many of our worries about morphine are myths. I should have said earlier that pain and agitation and shortness of breath are all antidotes to morphine. And it works for all of them.

Finally, please do not bottle up your memories of your loved one's passing. They may be painful, but they must be acknowledged. Our feelings find a way to make themselves known if they are not expressed directly, by making us ill, depressed, or fearful. I am certain that some of your memories of that time are wonderful - do you really want to deny those too?

In the end, know that whatever you did, you did with love. Everything you did was for the benefit of your loved one. Everything you did was the best thing you could have done at the time. So regret is meaningless.

Now two comments: 1) the author of "crossing the creek" is a nurse, not a doctor. (Had to get that little plug in for nurses.) 2) Ceasing to eat or drink before death is common. Before death, as the body shuts down, these desires go away. Your loved one was not thirsty or hungry. So don't worry about that.

- Teresa

[Pam]

Hello all,

I know I'm jumping in a little late on this - but I've got to add my two cents....

I think I was meant to find this post tonight - this has been an awful weekend for me - saturday was exactly 5 months since my dad's passing, and I've spent most of the weekend crying - laying in bed - feeling torn up and useless and guilty....

Today, our fish we've had two and a half years died. I cried like a big ole baby...my poor husband didn't know what to do. I sobbed out some things like "it was all my fault - I killed him - I should have done more - I could have fixed it - it's all my fault" and it took awhile for both of us to realize I was talking about my dad, not the fish.

When I found this post tonight- I was so relieved to hear others feel the same way.... Hospice gave my dad atavan, and something other than morphine since he had bad reactions to it, can't remember the name. But my mom and I wonder the same thing, did he want to talk to us = did he want to tell us something and couldn't because he was so highly sedated?

I remember saturday night - about 4 am - the hospice nurse was there, I was holding my dads hand and laying my face on it and crying and crying....she said he opened his eyes and looked at me, and tried to pick his other arm up and reach for me, but he couldn't get his arm over far enough to me, and his eyes closed again. This was the last time he opened his eyes. This haunts me...hurts me so much....why didn't I look up in time....

Oh God I miss him so much!!! I didn't know people could hurt so much....

On sunday afternoon he moaned and moaned and Hospice upped his meds again....the rattly breathing got worse.... I often wonder if he wanted to say something or was he in pain, was that why he was moaning?

I have so much guilt - and anger - why did the doctors keep him in the hospital for two weeks and never tell us that he was going to die? They never told us he was that close to passing - they released him on a Tuesday and by the next Monday morning he was gone....I feel like I should have done more - did he know it was coming? what was going through his head at the end? was he angry at me and mom for sedating him?

I don't know - I have no answers - just pain and guilt and remorse.....

[dusty26]

Others have mentioned books on this thread. Here are two very good books:

On Death and Dying, by Elisabeth Kubler-Ross (ISBN: 0684842238) and Walking in the Garden of Souls, by George Anderson (ISBN: 0425186113). George Anderson has written several superb books.

[Donna D]

Annie and All,

Oh my..... I can't believe what I've been reading...It's all there, the same thing, the same guilt i've felt for all this time. Did we kill her with all these meds. She couldn't talk to us that night, her last words that I remember were she wanted to die, she had a hard time breathing, she was still in pain even with the meds it was awful. I am crying as write this and and it hurts so bad. Thanks Teresa, I went and read your post again, and yes we did it for love, I miss her so much though, and it is hurting so bad right now.

Dona

[hollyridge]

A friend of ours recommended the web site "Crossing the Creek" before Bill died. I read it through and did not see that it pertained to us but thought it was interesting. After Bill died the same friend, who had just lost his wife four months previous, printed it out and had me read it again. Then I realized whast we had been eperiencing for a few weeks. Bill only had a few hours of not speaking but he did communicate even though he had ativan and morphine from hospice the last three hours. He smiled and he grunted in different tones to what we were telling him. He mouthed the words "I love you" to me just one hour before he died. He was so peaceful and I am grateful for the last minute help that the hospice nurse gave. We had not even enlisted their help yet but at about 4:00pm that day I realized he was dying and I called them rather than calling an ambulance and they sent a nurse and she made sure he was comfortable and then went to another patient. He was gone in less than 4 hours. I think we all have anxiety about those last days or hours because in our hearts we wanted to be able to perforn a miracle and stop the dying process. Only God can do that. We feel that guilt as we explore our actions to find some comfort in those final hours. A wise friend of ours told me and my kids the night before Bill died that we would just follow our hearts when the time came and that no matter what we did we were doing the right thing. He said you cannot make a wrong decision when you love someone. Do not look back. All decisions and actions at that time were the best we could give our loved ones and should not be regretted. Look for your peaceful memories and give the guilt a resting place. It is a destructive emotion and has no place in the hearts and minds of us who gave so much care to our loved ones. I am praying for peace for you.

[fade2blk]

Hello, I know I am coming in late on this too and you already have lots of responses. I just wanted to give my experiences. I lost 2 grandmothers within 2 years to LC. Both had brain mets. Both had terminal agitation at the end and in my opinion that was the real suffering on their parts. The one I lost recently suffered no pain whatsoever throughout her cancer, at least none she ever complained about. She even broke her hip and had surgery a few days before she died and complained about nothing. The terminal agitation, however, was hard for her. She kept saying she couldn't take it anymore, and she fidgeted constantly, and kept trying to get out of the bed. The meds they administered didn't seem to do much and she had about 4 days of really bad agitation. It was heartbreaking for us. What I am trying to say is that in this woman, who had these large tumors, the only suffering I ever saw was the terminal agitation. It was bad. If you were able to relieve that kind of suffering in your mother through medication, you did her a good thing.

[KC]

Actually, I did skim through crossing the creek before my father went into the hospital, but like Holly, I didn't think it pertained to my father. How wrong I was. He too felt pain even through all his pain killers and the agitation was really bad, until they gave him the ativan, it was the only thing that made him sleep, along with the dilaudid. He didn't have that until the Saturday before he died. I was with him on Saturday when they gave him the ativan and he fell asleep. When I left him he had been snoring for about 3 hours. I was called back to the hospital 2 hours later that he is in respiratory failure. They put him on a bypass machine, he requested no ventilator. He just told the dr. to make him comfortable. I almost insisted that he be put on the ventilator until I could find something else that would work for him. The dr. explained to me that if I did that, it would be cruel. He wasn't awake at all while we sat there with him for 4 hours. I asked the nurse and she said that he could hear us to keep talking to him, but that she didn't think he would wake up or be conscious again. I thought that he squeezed my hand at one point, but I'm not sure. It didn't happen again after hours of being there. I knew my father didn't want me to see him like that. It was awful, the rattling breathing, etc. He told me he never wanted me to see him like that. So I told him that I knew that he wanted me to go home and take care of my daughter and that I would be back in the morning. That he just had to do what he needed to do and how much I loved him and to send me the signs. I kissed his head numerous times and then I left. He held on for about 6 more hours and before we could get there the next morning he passed away. I too am wondering if he ever regained consciousness. It didn't look like he would and the nurse said that she didn't think so either. My father had told me the week before when he was home in lots of pain and couldn't sleep, that he just wanted to go into a coma a die. I'm hoping that's where he was and that he didn't open his eyes and see none of us there. I feel guilty to that I didn't stay with him, but I know my father didn't want me there, that's just the kind of man he was. He wanted to spare me any pain. I didn't understand that my father had been actually dying all those weeks and days. That is why I wish I would have read and UNDERSTOOD Crossing The Creek sooner, I would have noticed the signs and maybe would have spent his last days not nagging him to eat or take his pills and just have let him be in peace and talked about all the important stuff. We did that too, but you know, it's never enough. Hopefully, we can all find peace within ourselves. We did the best we can, I know we did.