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Still Waters
Posted: Monday, January 9, 2017 7:48 PM
Joined: 2/6/2012
Posts: 1092


How many of you would say that you let your loved one live longer than they should have. How many of you would say that the story of their life ended too soon. How many of you would say it is a little of both?
Tay46
Posted: Monday, January 9, 2017 8:08 PM
Joined: 9/18/2013
Posts: 243


Too soon for me and her life story had a rotten ending.
jfkoc
Posted: Tuesday, January 10, 2017 10:33 AM
Joined: 12/4/2011
Posts: 19543


Your question implies that I had control of my husband's death. I guess technically I did but did nothing to hasten his death. His body shut down, he faded away, he died on his own. Too soon? I wish he had never died but life ends with death and in God's time.
Still Waters
Posted: Tuesday, January 10, 2017 12:05 PM
Joined: 2/6/2012
Posts: 1092


I saved my mothers life about 30 times. My therapist tells me, I kept her alive too long. Sometimes I think she is right. Other times, I don't think so. I would love to have her around another year. But would she have loved to be around another year? I don't know. She was not dying and was not in pain just had no quality of life. So I have been pondering this question and wonder if others have had the same thoughts.

Anna-81
Posted: Tuesday, January 10, 2017 12:51 PM
Joined: 9/8/2016
Posts: 46


I took care of my dear husband day and night for 3 years, 7 days a week, without any help at all.  I did my best.  I pampered him, cooked everything that I thought he would eat, etc.  Then one day he sort of stopped eating.  I still coaxed him but he would eat only small amounts.  I panicked and did not know what to do.  I called Hospice on my own; his IM physician did not think he was ready for Hospice care.  Immediately Hospice came out.  The social worker told me to not feed him at all, to have his pacemaker turned off, that he was dying.  I could not do that.  I still coaxed him to eat.  I did not have his pacemaker turned off.  He would eat very small amounts of food and would drink some hot chocolate and eat applesauce which I made for him.  Hospice kept telling me not to feed him, but I persisted and did.  After 3 weeks of eating very little and getting weaker and weaker, I called the Hospice nurse on a Friday night; and vital signs and the fact that he had quit trying to do anything indicated to him that he probably was in the final 5 days of life.  I let them carry them to the Hospice Care Center because I felt I could not properly take care of him at home.  He died on the 5th day at their center.  Even though I believe that I did all in my power to extend his life, I still have guilty feelings that I allowed him to leave home.  I go between feelings of guilt and feelings that I did all that I could--then I go back to my deeply-rooted religious feelings and say that God called him home, in his timing and to get him out of further suffering.  I wish that I knew how to get over any thought of feeling guilty.  I wish that I could get over sometimes blaming Hospice.  The people at the Hospice Care Center were wonderful both to me and my husband.  The social worker that came to my home and advised me to completely stop feeding him and have his pacemaker turned off remains in my mind as being totally unkind.  I have declined any further contact with her and do not want their grief counseling.  I think that our grief in losing our loved ones sometimes causes us to not think clearly and hopefully all of this guilt will fade as time passes--and it slowly passes.
KML
Posted: Tuesday, January 10, 2017 12:59 PM
Joined: 11/30/2011
Posts: 2105


I think the body goes when it begins to shut down naturally.  I wish my parents never had to leave me or anyone for that matter who I love and care about.  But that is not reality.  Death is a part of life.  Some diseases can be cured, but not this one, not yet.  It's fatal and brutal.  There are different kinds of death.  I think of my friend whose son was a police officer, he was shot and killed at the age of 28.  His death was too soon.  My parents were suffering from a fatal disease for several years, in their case, their death was their release.

My mother could no longer swallow, the doctor talked to us about feeding tubes.  We could have chose to have the feeding tube and kept my mom alive for maybe a few more weeks or months.  That would have been for our benefit and not hers.  She was clearly suffering.  We loved her so we made the decision to let her go when her body was ready to.  I did in the beginning worry about if she was thirsty, hungry.  I came to accept the situation for her and she died quietly.  She died when her body was ready, when it was so tired and sick, it could not go any longer.  I had to accept that and now I do.  But that doesn't mean that I walk around with a light heart.  I will miss her my whole life.

My father one week before he died was declining but he could still talk and he could still eat and drink, the following week, it was a very fast downhill spiral, in those last two days, he did not want food or drink, he was clearly suffering.  He died the day hospice was to begin.

I don't k now if I can answer the question if they lived longer than they should have, it's not for me to say.  Their bodies made the decision for them.  I know I did all that I could humanly do to help make their life as comfortable as possible, I tried my best to address all health issues that could be treated properly.  I could not make them live forever.   There days when I wish they were here so I could still share things with them.  I miss them.  This is a part of life that we don't get to escape.  If there is a downside to love, this is it, losing and missing them.  So I've had to reform my thinking.  Now, I say, look at what I had with them, I remember them, I celebrate them, I remember the good times and I can only hope they are now living a different kind of existence where they have good health, happiness at long last peace and no more suffering of any kind.  Acceptance takes a long while.


Anna-81
Posted: Tuesday, January 10, 2017 1:07 PM
Joined: 9/8/2016
Posts: 46


KML, your comments helped me.  I am going to think positively today and try to move forward a little bit with my search for healing.  This forum also helps me, and I thank everyone for your help.
Still Waters
Posted: Tuesday, January 10, 2017 1:28 PM
Joined: 2/6/2012
Posts: 1092


Anna, I too have guilt that I sent my mother to the Hospice Facility! Hospice scared me and told me I could not stay awake all day and all night, in case she was in pain, to administer pain medications. I look at photos on my phone of her when she arrived at the facility. She looked so scared!!!! I have flashbacks. I really wish I would have kept her home. Friends and family also advised me to send her there when I KNEW in my heart it was a mistake. What was wrong with me? Why did I give up and send her there?  Why did I listen to all those idiots? In the meantime she did not need any pain medication, they told me she was in no pain when she died. She could have died at home, instead I made her suffer thru that ambulate ride when she was already not feeling good from not eating. I made her die in a strange place with strange people around her, when she could have been at home and in peace where she belonged. I feel terrible. Hospice also advised me to stop feeding my mother if she did not want to eat. I feel that was also a mistake. But I do not blame them. I blame myself. I knew what I was doing. I can not blame them for that. Guilt on top of guilt.

Anna the social workers and the bereavement counselors have very different personalities and completely different set of helping skills. You have nothing to lose and it is free! It helps me for a couple of hours a day a week. But then I go right back to torturing myself in the morning. But I look at it this way, if it makes me feel better for a couple of hours a week, it is worth it.

KML I find your posts so helpful because it gives me a perspective from someone who has been thru a lot, including guilt and is way ahead of me in grieving. I think that my therapist is telling me I let my mother live to long because she is trying to make me feel better not because it is the truth. But you are right. I have to keep reminding myself that death was inevitable. Thank you for all your wisdom.

 


Still Waters
Posted: Tuesday, January 10, 2017 2:08 PM
Joined: 2/6/2012
Posts: 1092


Ukie, I am sort of confused by your response. Not sure if you think she lived longer than she should have or not. I think what everyone is saying is it does not really matter. It matters to me though. I wish I knew for sure what she would have wanted.

surfergirl
Posted: Tuesday, January 10, 2017 6:26 PM
Joined: 1/23/2012
Posts: 781


Hi all,
Loosing some one you love is one of the most difficult things in life that we have to deal with. However, I feel watching them suffer or vegetate is decidedly worse. Maybe that is because that is not what I want for myself. I f I am not living just existing, there is just no point. My husband was bedridden for just one month, I was able to keep him home to the end with the help of Vitas, (they were wonderful) and the help of my kids and friends. I fed him all his favorites until he no longer wanted food, same with drink. He died peacefully with my hand on his forehead, and holding his hand with my other.He was just to sick to go on, 13 years since DX. I do not feel any guilt , I cared for him as best I could. It has been 18 month now, sure I miss him but not his sick self, but the way he used to be before ALZ. I am still alive , and plan on living that life to the fullest, until my time comes.

And please guys whatever decision you had to make ,do not feel guilty, that helps no one and only hurts you.Everyone on this forum has been through a lot, show yourself a little love, all of you deserve it.

Lots of hugs to all you Surfergirl
KML
Posted: Wednesday, January 11, 2017 4:01 PM
Joined: 11/30/2011
Posts: 2105


Anna-81:

It sure isn't easy to lose anyone you love.  I haven't lost a spouse, and I know that kind of loss is very different and very difficult.  Be kind to yourself and you don't have to rush through anything.  Grieving is a hard process and it's not something we get to skip, even though it's painful and it takes a lot of time and there's just no rushing through it.  There was a book that I read and it helped me, it's called On Grief and Grieving by Elisabeth Kubler-Ross.   It talks about different losses, it just helped me feel more normal about the thoughts and feelings running through my head.    I think you might find it helpful, too.  It's available at bookstores, maybe even in the library and definitely at Amazon.

I wish you the best and peace.


Tay46
Posted: Wednesday, January 11, 2017 9:49 PM
Joined: 9/18/2013
Posts: 243


KML wrote:

 There was a book that I read and it helped me, it's called On Grief and Grieving by Elisabeth Kubler-Ross.   It talks about different losses, it just helped me feel more normal about the thoughts and feelings running through my head.    

I'm currently reading this book. It's helpful.

Nadine60
Posted: Thursday, January 12, 2017 1:08 AM
Joined: 11/16/2015
Posts: 22


My husband's life ended too soon.  He was not terminal.  Just last May he was walking, dancing, singing and eating.  A week before he was admitted to the MC facility, he even danced with the MC nurse who came to evaluate him for admission into the facility.  He used to tell me "we still have a lot of life ahead of us".  Six months later he was dead. Yes, he was taken away much too soon. Had I not intervened, the unethical people in charge of his medical care would have probably finished him off in a month!

Surfergirl, how wonderful that your husband died peacefully at home.  That is what I would have wished for my husband.  Unfortunately, my husband was subjected to an agonizing death.  I will never forgive myself for handing him over to people who could care less about his well-being.

Anna, Still Waters, I also had social workers who told me and convinced me to make decisions that I later regretted.  Now that I think back, they had a manipulative way of patronizing and making me feel they knew better.  They are trained to that, at least the ones I dealt with. May God forgive me but I despise them.

Still Waters, going back to your question, if my husband knew he had dementia, he would not have wanted to live anymore because there is no quality of life with that illness. However, even with his dementia he still enjoyed eating, and drinking, and hearing music. He deserved to live a while longer and yes, he died too soon.    

 

 


Anna-81
Posted: Thursday, January 12, 2017 12:20 PM
Joined: 9/8/2016
Posts: 46


Nadine, I can understand your feelings, too.  The one thing that keeps haunting me every day is that I allowed him to go to the Hospice Care Center.  At that point in my life though, I was totally exhausted, by myself 24/7 except for the 3 days a week that the Hospice aides would give him a bath (and my sweet husband did not like their care), so when he took a turn for the worse very quickly after he had stopped eating, I felt that I could not take care of him at home and especially give him the pain medication injections.  I am hoping that my negative thoughts will go away as I continue to heal my broken heart.  The role of the caregiver is so difficult before and after death.  I know that my husband is at peace and in heaven.  I just wish that I could be at peace with myself.
surfergirl
Posted: Thursday, January 12, 2017 7:20 PM
Joined: 1/23/2012
Posts: 781


Hi all, 
I had just written  A quite long post, at least for me, that I thought was meant to be rather uplifting if controversial. I just hate to see people beating themselves up, when I feel very sure they did the very best they could do. my other post got an "edit and delete". maybe people don't like some one trying to make them feel better, I just don't know.For Anna is has only been 3 month, that's about the time reality sets in and is to soon to think about moving on.but there comes a time when you need to be kind to yourself, all of you did the best you could regardless of what you had to do.If it is your choice to wallow in guilt and misery there is nothing I can do.I do feel your pain, wish I could help.
Again hugs to yo all Surfergirl
surfergirl
Posted: Friday, January 13, 2017 8:06 PM
Joined: 1/23/2012
Posts: 781


Hi all, 
I just now read , what I think as not permission to post anything positive. anything I posted that after a persons time of there own choosing they should move on , as I happen to feel life is for the living. G ot totally shot down on "edit and delete". Don't know whats up with that, please explain.

 

Surfergirl
Still Waters
Posted: Saturday, January 14, 2017 6:56 AM
Joined: 2/6/2012
Posts: 1092


Surfer girl:  I don't know if you were referring to me deleting one of your replies but I didn't. But what I do know is that this site is very quirky. Very user unfriendly. Your message probably just disappeared. I don't mind if you give it vice about not feeling  guilty. I don't mind if you give it vice about moving on. Doesn't necessarily mean that I will agree but I certainly don't mind hearing everyone's opinion.
surfergirl
Posted: Sunday, January 15, 2017 6:46 PM
Joined: 1/23/2012
Posts: 781


Dear Still Waters,
Thank you for your kind reply, I only mean . I totally know grieving is so different for everyone.When I lost mom at 23, it was bad, would have so liked to have her with me when I had my 4th child, but that was not to be. I get how much it hurts, then my dad died of lung cancer when I was 36, he lived with us ,and I was his caregiver, with my then husband helping a lot.They did not have the oxygen concentraters "sp" back then that they do now, we had cryogenics bring huge oxygen tanks, and I had little kids running in and out. Tough times all. I get what you are going through , and mean no harm by trying to get you to feel better, my god girl, you are so young. I am 83 and still want some kind of good productive enjoyable life. Is that wrong?

 

Much love to you , and I totally do wish all the best to you , and all of you who are grieving,
I do understand

Hugs Surfergirl


Jo C.
Posted: Monday, January 16, 2017 12:58 PM
Joined: 12/9/2011
Posts: 11564


Hi there surfergirl,  I have seen in a couple of places you were wondering about the "edit" and ""delete" icons that show up on a person's posts.

The ONLY person who can use those on any post is ONLY the person who actually wrote the post.  No one else is able to use them.

Some folks come back after they have posted something and want to change or add to something they wrote, so they click on "edit" and they can get back in and change or add to their writing.

Other folks decide they wish they had never written their post or thread at all, in that case they can use the "delete" prompt and wipe out their entire post and it stays gone.

So good news; it is for our own editing and I have used "edit" several times and have been glad I had that option.

Hope this clears up that mystery.

J.


surfergirl
Posted: Monday, January 16, 2017 7:55 PM
Joined: 1/23/2012
Posts: 781


Hi Jo,
I get what you are saying, but I swear I have never touched any " edit or delete" button at all. Never wrote anything , even if controversial, that I wanted to either edit or delete.

Thanks for trying to clear this up, but basically I am still puzzled . Doesn't really matter  as long as I am not hurting any ones feelings.

Actually today I cried a good bit, found out friend of ours had passed, wife and I  always were close. she is in the hospital and has severe dementia. They had moved a distance away from us, and we lost a bit of touch. Another one of my friends just passed,that when we lived in Arabia ( our  husbands were in the petrol. business". We used to ride our horses in the desert together , and race the train with the engineers encouragement. Loosing  those people that meant so much in your life hurts.I still try to be a " glass is half full " kind of person ,but loss is painful.
I get what all of you guys are going through.

 

Hugs Surfergirl